Mermel's Blog Cabin

Enjoy The Journey - Naomi Carroll

2010-01-27T17:12:00.001-07:00

This sums up my last post Enjoy.

My Christmas 2009 Journal of a theif

2010-01-27T16:02:00.005-07:00

This Journal goes backwards like a normal Blog. I'm am doing well now. Like all thing they seem to happen for a reason my be some lessons Learned and possitive changes have and some yet to happen from all of this. This take time to build on and heal from this story will have more to it with time. I'm need to get through the extremely slow process of the Canadian Court system yet. My human rights issue with banks and customers with physical imparments needs work.I really was not sure about posting this. I still care about the Nurse but this is not JUST theift but she was a person who was BONDED and becomes an issue of of Financial Abuse when a Nurse has broken a Trust agreement and stolen from a Resident in Care in a Facility. Alberta has a provincial Act called Protection For Persons in Care...Also Alberta Licence Practical Nursing which is now equal scope of practice to a Diploma Registered Nurse (10 years ago) Program discontinued last year. We still have Registered Nurses with University degree focuses on Administration.

I found out that it was my most favourite nurse who stole my money it’s bittersweet because I’m very sad. I found out Christmas eve. 11:30 P.M. I cried most of Christmas Day & Boxing Day but glad to have space to process. I’m hoping my experience will help someon else.
Jan 27
Finally met with Edmonton Police Victim Services… Jan 18
I am beyond the crying need to know the “What next” I feel bad for A---- worse for her future victims. She can move from person to person with a poker face which bothers me . She has a court date Feb 26 until then is a waiting game. I hope she will plead guilt. Canadian Courts are slow sometimes bigger crooks get a chance to plead guilt to a lesser charge this lets people off bigger charges. If she plead guilty they may give her a sentence then. I was asked by EVPVS to write a “Victim Impact Statement” but am waiting for the handout to tell me what I must include it was more then financial…there were some Big emotional parts. It took my heart. I know many of them will try to share when I’m finished. If she plead Not guilty I will get a subpoena to attend court in the future. I’m happy to testify but don’t know what I’ll do if it’s in the morning. My care is 3.5 hrs (not all with staff)

Jan 11 2010

Like I told you I’m getting back my $500…They go permission to garnish her wages. I can’t Complain they’ve talked to police Since the Building Manager PR has been back I even met the HUMAN RESOURCES Manager. They couldn’t garnish without her signature. So they got her to sign on the day they terminated her contract don’t know why the don’t call it Bonding. They told me 2 days ago. I’m sorry I was going to tell you. Not only do LPN need a Police check during hiring they need another one yearly upon licence renewal also ay $200 for the licence yearly. They have been so attentive to me here . They will have a family conference in January to tie up loose ends.

The Police have not yet come back…The N----d Social Worker has been fantastic they will help me negotiate with the Banka workable solution that can work for me and others. I know Charges are pressed can get support through Victim Services . It was recommended on the card from Police. I might need to write an impact statement yet also. It may be needed should I request other damages….or need for court..I’m planning to follow this as far as G__y M recommends.

Michelle
To a Friend Jan 13, 2010
I’m doing OK mentally don’t get me wrong unfortunately the legal system is a big disappointment. And there so called support,. N-----d has done a lot. They even got my $500 back already Had I not told them I wonder when the police would have told them…I’m doing well..quite well.

What concerns me is not my own victimization yes I feel victimized more by the system yes true it’s the potential of her to hurt anyone else that really bothers me. But what really concerns me and angers me is her ability to lie and her potential to victimize others. She could get a temporary job with a desperate private Company and steal more. Often people will hire give a job without waiting gives 2-3 months for clearance go through. I know it’s not my problem but it angers me. I hate to think how long it would have taken them to Notify Norwood if I did not say anything.
Michelle

To a Friend Jan 05 2010:
The Edmonton Volunteer Police Victim Services Program.

I’m just annoyed at them regarding my case and just had some questions regarding A’s s Plea. She was charged with Thief Under $500 The Abuse of Care is in N__ds hands is what I heard but happy to follow all I can do through to the very End…(It could be awhile if she pleads not guilty. It will be worth it if this if it makes a difference for all. Rumours are A__
is playing “the victim” of a frame up (Please we have a photo from the bank machine, 1 verbal confession to police , , 1 verbal confession to me, , 1 written confession to me = Proof) I’m afraid she will pinch her unsuspecting Non N--------d friends playing “I’m OK” *whimper* Her Friend’s: We can pay you rent, legal Fee’s…….iphone bill , Lulu clothes…Right!

I’m just annoyed at EVPVS regarding my case and just had some questions regarding A’s s Plea 2-3 calls from me + 3 from N------d Social Worker S----H--- = 1 call back
“Well (S----H----) Aren’t you a Social Worker…can’t you do it?”
Sandra H: I know about the Justice System? I’m at a Nursing Center

S------has excellent knowledge. This has been a hard situation and is more than $500
And if A---- pleas not guilty, a dumb thing with all the evidence she is still lying telling her few friends left she was Framed.
She doesn’t have a twin, her face wasn’t stolen, I have never asked for $500 cash…I even pay M-----l by check for my shopping.
My room has my Cash from Christmas. Under $100. I had to sign a paper get the cop to go in that drawer for my stamp… where the money is.
I know I never asked her to with draw…even with her confession to me, Norwood, Police could she lie again say I told her to take the money out?
Everyone here knows I didn’t Cst, K_k is too aloof and I am not comfortable. I know I will win but a Not Guilty Plea might drag on and keep
Her in Canada longer. That would be her motive for dragging it on. Not to mention cannot access any banking until I can get there. I’ll live but
Feel The Police’s Your Never Alone is Crock.

From: Dad
Sent: Thursday, December 31, 2009 8:34 PM

Hi Dear,
1) Someone reminded me that the Cap Health employees are bonded (insured) and you have proof that an employee stole your money therefore Cap Health is responsible for the loss. Talk to the head honcho. You have good proof (the email & police report) of wrong doing because they have let her go and may even have her deported.

Luv ya much

Dad n Dar.
During this emails composition...great Minds think alike.
I already had that done. M

Dec 26

P__ K & C___ from Palliative are here I gave another full debrief. They have to follow procedures won’t let what I do matter. After I told them I remember a lie she told me “It could not be me because as why would I go downtown when Kingsway is Close” She appeared sincere. A Staff mentioned how perhaps God sent this task to me for a number of reasons R_s_ LPN had mentioned lots of money was stolen perhaps she took Nurse M’s $400, The next week A---- said she had $200 meant for her kids was stolen was it a rouse for handout? The staff now have lockers in the coat room. Stan’s Money was missing to from the box at the desk other staff and residents too. Was it her Maybe...or even a few Maybe not at all. I do know. Perhaps working with Gary (& police?) to lobby for a way for people who can’t type a PIN can sill be able to do purchases, withdrawals and other transactions. A--- even had the nerve to write this which I discovered at 2 PM today. P__ K & C___ from Palliative was on cal know. Her comment about past theft makes me wonder. She has an iPhone.

I saw at 11:30 PM Dec 24, 209

Written letter of Confession-
Sent: Saturday, December 26, 2009 9:19 AM

Good Morning, Michelle, this is A----. I got a new email add already so I decided to talk to u again even if not personally since I'm still away for now. I wanted to call u but I left my phone at home coz I can't think straight, everything is messed up in my mind. Be back tom. Afternoon to face the consequences of the things that I have done for you. First of all I would like to say thank you for listening to me the other night. I know that until now you are very disappointed and mad of what I have done. I haven't slept for nights thinking about t hat.. but the primary reason of doing that is out of desperation to help my sick father even though I know that it is really wrong. It is not my intention of hurting your feelings and in the end of losing your trust in me. I am still a good person in such a way but I know what I have done would make my life miserable. I promise that I would pay back the money that was lost as soon as I can. Michelle, I am again asking for your forgiveness and please, please give me another chance of proving myself to you.. and if you were thinking that I am responsible for every losses in the unit I can honestly say to you that I'm not..I also lost my money a couple of months ago remember? Even though sometimes I don't eat anymore just to sustain the needs of my family, I am bearing all those hardships for them. And for this I learned my lesson the hard way. It so happened that I was tempted by devil to do such an act considering that my father needs it the most even though my conscience tells me not to do so. Please Michelle have pity on me.. I need my job for my kids who are very young and dependent on me.. I am begging for your help and forgiveness.. I am praying that the Good Lord will give you strength and enlightenment to forgive me and get through all of this.. Please Michelle have a heart for me and my family.. I am deeply deeply and truly SORRY.

Dec 25
Last night Christmas Eve I got the worst present ever…a confession…We’ll the mystery of the thief is over A---- was the culprit confessed to me after the police caught her last night I was completely so sure it was not her.. She fussed up before leaving to K___a B.C. Her father being ill was desperate for money. She says that it’s up to me to press charges,, But it’s more too it than that. I trusted her…I don’t want to be cruel ….but she was desperate… if I do nothing..what about the others…she had so many chance. She claims to pay me back…my heart forgives her does not replace the problem of the safety of other’s….I’m feeling sick about this know but God will get me through this. At first I asked to see the building manager but had no choice but to tell C----the RN . It was a good thing because she called Phil the Floor manager as well as Cl----- the palliative Nurse.

Michelle

I wrote Dec 18th to a friend
PS N----d Social worker S____r_ H___s stayed for moral support

The 2 police Ladies took my statement last night were so far extremely supportive and were honest on how easy crooks can get pins at the same time a purchase is made via a machine. It’s too bad the bank wasted my time. I could have started he process 2 weeks ago. They are back stepping my history of that card they are tracking all the possibilities of the cards venders (Activated Oct 26 2009, which was only 3 machine transactions and the one where at stall of rented booth a long time book vender at the Glenrose purchase failed to go through. my first attempt to Activate my card) and including the staff . I’m sure it was not but if anything rules her out it’s not her are putting some pressure on my bank to help me better find a safer way….and reconsider paying me back (FYI They won’t so far) This morning when some other staff made a comment that she would never help a resident with a bank card I realized that on the positive side there are photos when there is theft with bank card . There are now pics of the crook which would rule out innocent. It would not happen if I had cash stolen,

The bank lady was told me today that I must call the police after all this fooling around they are not taking responsibility for the fact they say it’s not fraud. They are trying blame “The Nurse” (A----…the don’t have a name) I had my card. I’m thinking it was the teller at shopper’s who scan my card. She was distracted by a guy at the til behind me. I don’t remember if it was swiped 2x.I saw my card at midnight when I saw the bag missing. I need you guys to call or be involved I need your help getting the police to come. I’m so mad they waited 2 weeks.
I need your support. I have no doubt A---- did not steal my card.

On October 26 had a brand new chipcard end of October activated at the Glenrose Instabank with my friend & Church member D__e P__r…(We had tried to activate it at the Bookstore vender another book Company had been at the Glenrose outside the Glenrose on right-hand side facing Glenrose Bookstore. We chopped up my old card without a chip into bits. I used it only at 2 stores at Kingsway at Shopper’s Drug Mart & H & M Clothing...Kingsway Bank of Montreal has remained I went with a N----d Bus and the nurse so extremely honest..…I forgot 1 bag at Shoppers realized the next Day by Iris the unit clerk picked up without my card but the receipt and items checked and highlighted missing items…the best ID for the lost & Found at Shoppers. I mention this only because I looked in my purse and my bankcard was there. I keep it in a special paper sleeve and it’s not easy to get to. Since I showered I stayed in bed the afternoon on. (Nov 28) I didn’t know until the next week someone stole $500 from my account from an Instabank at THE MAIN BMO BRANCH downtown.

Bank took a week to say it’s not fraud due to the nurse had helped with my punching my pin in. They knew 6 days ago. Because I chop my old card to tiny bits and this card was used in front of me …the card was with me the whole day…I was in bed and was 99.9999999 impossible to steal. It was only activated last Oct week. Since the $500 (is my Maximum withdrawal was taken from a downtown BMO THE MAIN EDMONTON BRANCH no more could be taken …I wonder if it wasn’t some inside the post office through the envelop. Brad suggested perhaps someone hacked into a stores computer? The thing is I know 3 other people and staff know they had money stolen….from having their chipcard copied

B---d also thought it is possible someone hacked into the stores computer online and made a new card transferring my chip data….some fraudulent tellers are known side swipe under the counter copying the chip info…

If the nurse had been a crook…which I know she did not..…….But even if she had my pin she still had NO card.

Anyway I’m now waiting for the bank to aware the instabank photos. Dad & D & C and Aunty C are helping with funds. My account is on hold. I’m not sure what to do but get a new aced and pin and continue gambling. I feel tied down with a N----d account, I am so grateful to many people. My friend the computer guy has never used my card was my bank currier. I just want people with mobility impairment or have the freedom $safety of an ATM Card but are protected. Is there any president in the Federal Court? There should be a law to protect people’s rights. I’ll get over the $ but I feel like a rights violating. That’s my beef. With the rate of occurrence it will likely happen again. The Bank sent me the card mid October asked me to use it for my safety. To me the chip might copy like a smart phone or cheap mp3 player. . (I added a couple other emails to get a better picture…read at your leisure)

Dec 14

The bank lady was told me today that I must call the police after all this fooling around they are not taking responsibility for the fact they say it’s not fraud. They are trying blaming The Nurse "A----". I had my card. I’m thinking it was the teller at shopper’s who scan my card. I don’t remember if it was swiped 2x.I saw my card at midnight when I saw the bag missing. I need you guys to call or be involved I need your help getting the police to com. I’m so mad they waited 2 weeks.
I need your support. I have no doubt A---- did not steal my card.

Dec 11 I wrote to a friend.

I had $500 stolen from someone who has a copy of my chipcard. The few times I’ve used it with me always present only very trustworthy type my pin. Even though my card was safe where it was it has not left my purse. Even though it was 6 days later I know the card was there as I looked that day. The bank is saying not fraud because someone helped me. Like I’m so very desecrate I try to give my pin to the person around the corner…nobody remembers at the till …so I mumble…my lips are hard to read. I know 3 other people it has happened to 2-3 who know somebody the bank usually knows its fraud.
They waited a week to tell me this. Although they are requesting security photos ….but I’m 99.9 99999999999 I just know that I won’t know the person. So then they will just say the lady got someone to else to steal it for her. That’s would be fraud.
I have family to help me I don’t want to but the $500 can be dealt with.. I wonder what to do next. Of course I will get a new card and pin. I want to shop in stores & online (a differ #) and pay my own bills. Carrying cash for everything is cumbersome and dangerous. But with not allowing trustworthy people to help you and someone copies your chip, the pin loophole, the bank can not take responsibility for something they asked me to do. I think people with hand impediments will be a bigger target and will have no choice to use nursing Center accounts which is very limiting.

Dec 6

Some scrooge On Friday Nov 27th the day after our group shopping trip Thurs...H &M & Shopper was the only 2 stores we had time for. I realized I was missing a bag so Friday Iris the Unit clerk picked it up with only the recipient with items I had checked…Item missing unchecked. It was in lost &found t Shoppers.

I mention this because, I knew the girl with me was very very trustworthy...a victim of theft last year but to make sure it was not misplaced…I still checked my purse the card was there. It was a fluke that I logged in to pay bills today I noticed a large chunk of money was gone some Scrooge stolen $500 from an instabank downtown. I haven't been downtown since this summer. The new chipcard for supposed security was here with me the whole time...if not for the missing bag I would not have known that for sure 100%...was in my room all Fri is my bath-day. My pin is in my head different than my online/phone banking. The banks been notified put a freeze on my account I won’t know until next week. I’m short my rent $500 but it not due yet. The bank will return the $500 once they investigate for fraud. But not if they don’t and there is no proof...the crook & BMO gets away. The card was only used 3x...once when I activated it. My pin I got in MW Dad & Cleo offered to help me if they don’t. But damn scary... It was a genuine BMO chip card. I didn’t want my old card to become obsolete.

1. It happed at the instabank 10199-101 ST. I Googled is the Main BMO Branch downtown . The card never left my side (you see Thurs we went to Kingsway only shopped at Shopper’s the new H&M Clothing nice stuff very affordable…The sizes are when the Tell forgot to give me a bag Thurs. The receptionist picked it up with the receipt not the card. It was then I double checked my wallet was on my wheelchair the whole time
2. My pin number was changed after Artspace & house the first year at GSS none of my ex- attendants would have my pin
3. My card pin & internet pin are very different
4. My old card I saw cut into bits by my Bible Study mentor
5. I haven’t sent my card out with anybody without me in years not even friend M_k_.

Nov 28 at midnight while looking for my Chocolate and noticed I was missing quit

Nov 27
Group Shopping trip. I took A---- behind clothing and whispered my pin but I sill had to mumble them to her for both transaction
Shopped with card at H & M Clothing It
Shoppers The woman at the till was young Dark haired with glasses was distracted by a guy behind me…I did not pay attention to their conversation. She handed A---- my card who put it in my purse

October

$500 was stolen from an Instabank at main Edmonton branch……Read below
IDP flaws and features
Interac Direct Payment is a PIN-based system where the information entered on the PIN pad is encrypted and verified at a central server, rather than being stored on the card itself. Because of this, it is significantly more secure than traditional signature or card-based transactions. Despite these security features, there are ongoing fraud concerns, particularly when debit cards are duped or skimmed — a compromised automated teller machine or point-of-sale terminal will record the account information contained in the magnetic strip of the card, allowing for duplicate cards to be created at a later time. The owner of the card is then secretly video taped or observed entering their PIN, allowing a criminal to use duplicate cards to make fraudulent purchases.
http://en.wikipedia.org/wiki/Interac

Live A Quality of Life, Not a Policed up the YinYan, Life

2009-12-07T22:48:00.001-07:00

To all the people who keep adding red tap, over kill on safety, Policies and making money out of perceived liability…Even after I’ve signed a release form. Regarding (managed Risk Agreement) my Ventilator in order to live a quality of life, not be like John Travolta in “The Boy in The Bubble”

I'm tired of Medical Care Companies Charging enorous amounts of Money . They feign Liability in order to charge more, or refusing to provided serves.

Our Society is Capitalzing on even your fears and health concerns to make a bigger proffet. Like the horrendous fish (recycled bits of unsellable). Crush into fillets dipped in flax seed and sold to care facilitators as nutrition...the Market

I want to say to these people “put yourself in a zipped lock bag and call a Cryogenic Lab. Because when the Bus hits you walking across your lawn, and your in the hospital with flesh eating disease, you better have insurance to pay the family of the 110 year old woman who was riding the bus has a heart attack will sue”

The Truth is if my ventilator quites and nobody responds ASAP I could die. I'm getting excellent care for the last few years. I say with bated breath..has not alway been...may not always be. I cannot harbor in fear, if I spend anytime worring because when I go down that road I cease to live my life. I do not fear being Dead as God will take care of Me. What I fear the most having been to that door before is the suffering my Physical body has to now may endure. Not being able to breath, having pain, tight chest is scary. But it's just as likely to happen here. So I avoid dwelling on it in order to live.I just have to pray that when my time comes to board that train God gives me the ticket for a smooth trip....I won't be Sueing.

Sidewalk Prophets :: The Words I Would Say...

2009-10-26T23:08:00.001-06:00

What Cats Are Really Thinking

2009-10-15T13:49:00.001-06:00

My Kieryn looked like this

John Denver - Sunshine on my shoulder.

2009-10-09T12:37:00.001-06:00

I have always loved this song. This version is particularly lovely.

Footsteps of Angels - Henry Wadsworth Longfellow

2009-09-20T08:38:00.001-06:00

Footsteps of Angels

When the hours of Day are numbered,
And the voices of the Night
Wake the better soul, that slumbered,
To a holy, calm delight;

Ere the evening lamps are lighted,
And, like phantoms grim and tall,
Shadows from the fitful firelight
Dance upon the parlor wall;

Then the forms of the departed
Enter at the open door;
The beloved, the true-hearted,
Come to visit me once more;

He, the young and strong, who cherished
Noble longings for the strife,
By the roadside fell and perished,
Weary with the march of life!

They, the holy ones and weakly,
Who the cross of suffering bore,
Folded their pale hands so meekly,
Spake with us on earth no more!

And with them the Being Beauteous,
Who unto my youth was given,
More than all things else to love me,
And is now a saint in heaven.

With a slow and noiseless footstep
Comes that messenger divine,
Takes the vacant chair beside me,
Lays her gentle hand in mine.

And she sits and gazes at me
With those deep and tender eyes,
Like the stars, so still and saint-like,
Looking downward from the skies.

Uttered not, yet comprehended,
Is the spirit's voiceless prayer,
Soft rebukes, in blessings ended,
Breathing from her lips of air.

Oh, though oft depressed and lonely,
All my fears are laid aside,
If I but remember only
Such as these have lived and died!

Henry Wadsworth Longfellow

BUILDING 429- "ALWAYS" To By Brother

2009-09-14T10:04:00.001-06:00

This song is a True Story. There was a a Lady at an Autograph signing who told the band member that her abusive ex husband had killed her little boy on his weekend visit. The composer did not know what to say...he c..usually not in his character could not stop Crying. for the remander of he signing.

When my Mom died I was 20 my brother 16I was a Christian (or thought I was) could not give my brother the answer..I knew My Mom had a trying Life was with Jesus. What do you say to a 16 your old who lost the Only parent he could tust (his father my step father....had some issues not someone he could go to ).I feel I still need to answer him as he is now again going through another loss. I love him and feel I hope these words comfort him...I Love You and am here for you J...Michelle

Always -by Building 429
I was standing in the pouring rain one dark November night
Fighting off the bitter cold when she caught my eye
Her face was taught and her eyes were filled, and to my surprise
She pulled out a photograph and my heart just stopped inside
She said, "He would've been three today
I miss his smile, I miss his face"
What was I supposed to say, but

CHORUS
I believe always, always
Our Savior never fails
Even when all hope is gone
God knows our pain and his promise remains
He will be with you always

He was living in a broken world, searching for a home
His heart was barely keeping pace when I found him all alone
Remembering the way he felt when his daddy said goodbye
Fighting just to keep the tears and the anger locked inside
He's barely holding onto faith
But deliverance is on its way, cause

CHORUS
I believe always, always
Our Savior never fails
Even when all hope is gone
God knows our pain and his promise remains
He will be with you always

Friend, I don't know where you are and I don't know where you've been
Maybe you're fighting for your life or just about to throw the towel in
But if you're crying out for mercy, if there's no hope left at all
If you've given everything you've got and you're still about to fall
Well hold on, hold on, hold on, cause

I believe always, always
Our savior never fails
Even when all faith is gone
God knows our pain and his promise remains
Always, always, He will be with you always

The Whole World

2009-09-06T19:12:00.001-06:00

My little Light

2009-09-06T19:07:00.001-06:00

Weird Al - Constipated

2009-08-30T15:26:00.001-06:00

"too cute"

"Weird Al" Yankovic: Canadian Idiot

2009-08-30T15:18:00.001-06:00

Today was the first time I heard this. I'm a born dia hard Canadian an still think this is cute. I hope nobody is offended. I ponder this...Is Weird Al making fun of Canadian habbits...or something else?

The Princess And The Frog Trailer

2009-08-24T23:06:00.001-06:00

The Princess and the Frog - Film Clip

2009-08-24T22:53:00.001-06:00

I am soooo excited about this. My cousin Dan Turner's Studio is working on this Movie..A Canadian Company>>A return to Hand drawing and new equpment. it look awesome
More good behind the scenes links::

http://www.comingsoon.net/news/movienews.php?id=55318

http://www.comingsoon.net/news/videonews.php?id=57113

http://www.comingsoon.net/news/videonews.php?id=57114

Webfetti Layout

2009-08-21T15:51:00.002-06:00

The Lion King on Broadway - They Live in You (Jason Raize)

2009-08-06T22:29:00.001-06:00

Hello Again - Neil Diamond (HQ Video)

2009-07-11T14:12:00.001-06:00

Just to let you know I'm feeling better my pnemonia and Shingles are both gone...

Happy Father's day

2009-06-15T09:44:00.001-06:00

The Moody Blues - Nights in White satin´67
My Dad really loves this song

Celtic Woman - Send me a song

2009-06-10T09:50:00.001-06:00

Take the wave now and know that you're free
Turn your back the land, face the sea
Face the wind now, so wild and so strong
When you think of me, wave to me and send me song
Don't look back when you reach the new shore
Don't forget what you're leaving me for
Don't forget when you're missing me so
Love must never hold, never hold tight, but let go
Oh, the nights will be long when I'm not in your arms
But I'll be in this song that you sing to me
Across the sea, somehow, someday
You will be far away, so far from me
And maybe someday I will follow you in all you do
'Til then, send me a song
When the sun sets the water on fire
When the wind swells the sails of your hire
Let the call of the bird on the wind
Calm your sadness and lonliness
And then start to sing to me
I will sing to you
If you promise to send me a song
I walk by the shore and I hear
Hear your song come so faint and so clear
And I catch it, a breath on the wind
And I smile and I sing you a song
I will send you a song
I will sing you a song
I will sing to you
If you promise to send me a song

I Fly in Dreams…Like the Fairies Do

2009-06-09T00:03:00.003-06:00

Walking In The Air - Chloe Agnew

I've been asked if I walk in my dreams or use my wheelchair my answer is neither,

this song sums it in a nutshell ..like the fairies…I fly invisible Michelle

"Walking In The Air"

[Intro:]

Walking in the air, floating the sky...
Floating in the air...

We're walking in the air
We're floating in the moonlit sky
The people far below are sleeping as we fly

We're holding very tight
I'm riding in the midnight blue
I'm finding I can fly so high above with you

Far across the world
The villages go by like dreams
The rivers and the hills
The forest and the streams

Children gaze open mouthed
Taken by surprise
Nobody down below believes their eyes

We're surfing in the air
We're swimming in the frozen sky
We're drifting over icy
mountains floating by

Suddenly swooping low on an ocean deep
Arousing of a mighty monster from its sleep

We're walking in the air
We're dancing in the midnight sky
And everyone who sees us greets us as we fly

2009-06-08T10:47:00.001-06:00

RUSSIA -- Tchaikovsky - Sleeping Beauty - Waltz

2009-05-30T16:23:00.001-06:00

To my Mennonite Ancestors.....Their homeland

Moonlight Sonata

2009-05-30T16:16:00.001-06:00

Celtic Women- Fairies

2009-04-29T23:25:00.001-06:00

Spinal Muscular Atrophy Kids (Fight SMA)

2009-04-29T21:47:00.001-06:00

I want to cry. I am so lucky.

If Life was easy

2009-04-29T19:45:00.002-06:00

Faith is

2009-04-29T19:35:00.002-06:00

Desiderata

2009-04-25T09:45:00.002-06:00

Yesterday - Eva Cassidy

Desiderata - A Tour of Red Eagle Ridge Part 1/2

2009-04-20T08:21:00.001-06:00

My Baby part 1

Desiderata - A Tour of Red Eagle Ridge Part 2/2

2009-04-20T08:18:00.001-06:00

My Baby part

I wish I Knew How It Would Feel to Be Free by The Lighthouse Family

2009-04-13T18:11:00.006-06:00

(I Wish I Knew How It Would Feel To Be) Free/One - Lighthouse Family
(I must say I although I am free in Christ there are Days my Earthly Body is imprisoned so feel it won't go against my faith to share it) My Friend Maria intoduced me to this Beautiful Song and so Dedicate it to my fellow Sisters (and Brothers to :))who deal daily with chronic pain.

I Knew How It Would Feel To Be) Free/One - Lighthouse Family

I wish I knew how
It would feel to be free (second Version)
I wish I knew
How it would
Feel to be free
I wish I could break
All the chains holding me
I wish I could say
All the things that
I should say
Say 'em loud
Say 'em clear
For the whole
Wide world to hear
I wish I could share
All the love that's
In my heart
Remove all the bars
That keep us apart
And I wish you could know
How it feels to be me
Then you'd see and agree
That every man
Should be free

I wish I could be like
A bird in the sky
How sweet it would be
If I found I could fly
Well I'd soar to the sun and
Look down at the sea
And I'd sing
'Cause I'd know
How it feels to be free

I wish I knew
How it would
Feel to be free
I wish I could break
All the chains holding me
And I wish I could say
All the things that
I wanna say
Say 'em loud
Say 'em clear
For the whole
Wide world to hear
Say 'em loud
Say 'em clear
For the whole
Wide world to hear
Say 'em loud
Say 'em clear
For the whole
Wide world to hear

One love
One blood
One life
You got to do
What you should
One life
With each other
Sisters
Brothers
One life
But we're not the same
We get to carry each other
Carry each other

Woah, woah, woah, woah

I wish I knew
How it would
Feel to be free
I wish I knew
How it would
Feel to be free

Mermel's Music

2009-04-12T15:46:00.000-06:00

I Will (The Beatles)

2009-04-11T10:18:00.001-06:00

I Will Lyrics
Artist(Band):The Beatles

Who knows how long I've loved you
You know I love you still
Will I wait a lonely lifetime
If you want me to, I will.

If I ever saw you
I didn't catch your name
But it never really mattered
I will always feel the same.

Love you forever and forever
Love you with all my heart
Love you whenever we're together
Love you when we're apart.

And when at last I find you
Your song will fill the air
Sing it loud so I can hear you
Make it easy to be near you
For the things you do endear you to me
Oh, you know, I will
I will.

A Foreward Note to the Song "Forget About It"

2009-04-11T08:55:00.004-06:00

For my Broken hearted friend someone who wrote the lyrics before your tale began luv ya Heaps Mermel

Alison Krauss - Forget About It - in Upscaled HD

2009-04-11T08:38:00.001-06:00

Forget about it
I'm admittin' I was wrong
And I'll just take what's mine
And broken right out the door

Forget about it
I'll split and I'll be gone
And you'll have memories
You'll find hard to ignore

'Cause after all
I'll see you sometime
Maybe when I can't recall
How you drove me crazier

Forget about it
When forever's over
I won't remember how much
I loved you anymore

Forget about it
Put me out of your head
Now that you're free and easy
Out there on the town

Forget about it
When you're lying in bed just wishing
I was there to lay you down

'Cause after all
I'll see you sometime maybe
When you will recall
How I drove you crazier

Forget about those starlit nights
Laying by the fireside
Holding you tight
I can't remember when I felt so right
So just forget about it

Forget about it
When you see me on the street
Don't wink, don't wave
Don't try to tease me with your smile

Forget about it
If we chance to meet somewhere
Don't think it's cause I'm trying to reconcile

'Cause after all
I'll see you sometime maybe
When I can't recall
How you drove me crazier

Forget about those starlit nights
Laying by the fireside
Holding you tight
I can't remember when I felt so right
So just forget about it

A Fairy Song

2009-04-09T15:12:00.003-06:00

A Fairy Song

Over hill, over dale,
Thorough bush, thorough brier,
Over park, over pale,
Thorough flood, thorough fire!
I do wander everywhere,
Swifter than the moon's sphere;
And I serve the Fairy Queen,
To dew her orbs upon the green;
The cowslips tall her pensioners be;
In their gold coats spots you see;
Those be rubies, fairy favours;
In those freckles live their savours;
I must go seek some dewdrops here,
And hang a pearl in every cowslip's ear.

William Shakespeare

Short Bio and Choice of Hope

2009-04-05T14:12:00.001-06:00

I thought that I Should recap my life story. It's been a few years some folks might not feel like reading the paper I wrote on my life to advocte for the a unsafe environment in which we lived in before we moved here in 2006.. ..a little note for Becky at end..thanks

Out on the Mira

2009-04-02T10:22:00.001-06:00

John McDermott (Canadian) - Song for the Mira

2009-04-02T10:14:00.002-06:00

I love ya

Song for the Mira

Out on the Mira one warm afternoon,
Old men go fishing with black line and spoon
And if they catch nothing they never complain,
I wish I was with them again.

As boys in their boats call to girls on the shore,
Teasing the one that they really adore,
And into the evening the courting begins,
I wish I was with them again.

Can you imagine a piece of the universe
more fit for princes and kings?
I'll give you ten of your cities
for Marion bridge and the pleasure it brings

Out on the Mira on soft summer nights
Bonfires blaze to the children's delight
They dance round the flames singing songs with their friends;
I wish I was with them again.

And over the ashes the stories are told
Of witches and werewolves and Oak Island gold
The stars on the river they sparkle and spin;
I wish I was with them again.

Can you imagine a piece of the universe
more fit for princes and kings?
I'll give you ten of your cities
for Marion bridge and the pleasure it brings

Out on the Mira the people are kind,
They'll treat you to home-brew and help you unwind.
And if you come broken they'll see that you mend
I wish I was with them again.

And thus I conclude with a wish you go well,
Sweet be your dreams, may your happiness swell,
I'll leave you here, for my journey begins,
I'm going to be with them, going to be with them,
I'm going to be with them again.

Mermels Little Blog Cabin

2009-03-30T10:08:00.001-06:00

My Blessing to you

2009-03-26T14:14:00.002-06:00

I'm sorry I have not blogged in a few days. I'm doing well my wound has been healing. I go for an appointment May 4. For no more fancy experiments just my regular dressing. I have been using a silver impregnated dressing called Aquacell can dry up a wet wound or a with a wound too dry a few drops of water moistens to Jello. I've

I just wanted to tell everyone that I am so grateful to have each of you in my life. II pray you all have a blessed day. would I May everyone who received this message be blessed.

May today be all you need it to be. May the peace of God and the freshness of the Holy Spirit rest in your thoughts, rule in your dreams tonight, and conquer all your fears. May God manifest himself today in ways you have never experienced. May your joys be fulfilled, your dreams be closer, and your prayers be answered. I pray that faith enters a new height for you; I pray that your territory is enlarged. I pray for peace, healing, health, happiness, prosperity, joy, true and undying love for God

Molly's Moo is a Hoot

2009-03-20T08:13:00.006-06:00

Good Morning. This is a littke Gem from my sister Barbara in British Columbia. Molly is completly Blind and Moo's...no she's not a cow but Miniture Dashound..its so cute. Molly's not just Barb's pet she works with my sister who's an Early Childhood teacher for kids 3-4 years old in her preschool class, Enjoy!

Thank-you

2009-03-17T21:51:00.002-06:00

Thank-you for caring email My server was down . I'm healing.... I'll be out tomorrow....see you in a few days..luv ya

Angel Reading from a New Friend

2009-03-15T18:27:00.004-06:00

I had a very unbelieveable Event happen that I may share with you how I met this young lady...People will think I'm nuts. I believe was God's will that we meet But B gave me this reading which has reminded me to never give up hope

I knew as soon as I saw your picture this morning that the picture I had drawn was you. I think the spirits are trying to show us both to have faith and believe for they are with us always. I have done a reading for you because I wanted to. I hope you don't mind. This is the messages I received for you. The Angels want you to know they are always with you, and will always be with you, they can not leave you no matter what , they are your angels for eternity for that is what God asked of them from the day your were conceived. The angels told me to tell you that your life was no mistake. you chose to live this life before you came into it and god granted it to you because he loves you and he wanted to watch you succeed in this choice you made. For you are one of god's most beautiful children for you chose one of the hardest lives to experience. He is proud of you as are the angels who watch over you. The angels want you to try to find balance in your life. Balance between work ,exercise, spirituality,meditation and play, for in balance you will find comfort and peace.The angels said do not fear child for all you have to fear is fear it's self for you are always safe because the angels are always with you. The angels want you to listen to beautiful music for music will sooth you and comfort you and help you to connect to your divine self. The Angels tell me they are here for you always all you have to do is speak to them and they will be there to help you in any way you ask.
I hope this reading brings you peace and comforts you in some way. Your friend B

Thank-You B

T- File Update

2009-03-15T17:51:00.006-06:00

Here are some notes I sent to my family on The Tube File

March 10

I'm so much better when the RN's cut out the Drama. It's difficult enough for me as it is. I'm glad I put the brakes on. That new wound looks good..then gets wider. I've been dry for 3 days. Tomorrow I need to do it. I hope they do it Well...I haven't opened the dressing in 2 1/2 days...I don't want" it's wider "news.. I wish C_ was off at the head somedays..That C_ always tall's A_ exaggerate truth. Before you know it I hone THE WOUND TEAM stand over me. That C_ sits on her tush all day but shows off at my expense...OK I will send them

My gear for all wounds Scissors ,, Alovista (aka Sproam cleanser) Biotane, MEFIX..Mepelex Boarder Aquacell..Oh yeah chopped up new incontinence product 3" x5" ( not called an adult diaper)

then roled from The truth is that it does worry me enough. . That extra hole scared me as some people get them her & GSS size of dinner plates..Lots of people give up then..I'm not their yet. but they made it out like I was procrastinating fixing itBbut I know THEY are the ones who could not get a surgeon to consult an opinion on me. Like you heard with your own ears from Dr. Murgi..2006 Sept when I had Heart attack symptoms I can't get on a Normal Medical or Surgery Unit due to ventilator politics..who'-da-thought I could not get in a Hospital on a ventilator. LOL---LOL---LOL :) Either a Emergency or ICU. Even that night they were complaining when I got there. What the point.I don't even get all my medication represcribed..I am getting into medication technic. I wonder if Aimy Gillard still does Raki? I will try to call her

Oh Got my new bed...pretty fine I Say I can fly..

tate-of-the-art Advanta http://www.hill-rom.com/usa/Certified_Advanta.htm No pump..self contained..very quiet technology..has a low hum occasionly shifts to conture my body. Feels like warm firm jello...with slight air movement....The Manual attached was on another site found it by accident seems big but has only 1 setting where are your feet?The bed does the rest.
Love Michelle

March 4 2009
Subject: Old Stab Wound Are Hard to Heal- My Bed Mapping Adventure

What a day my bed's been mapped by a $8000 Crazy carpet hooked to a laptop. laptop very high-tech. It Maps your body's pressure points and bumps according to the points yor skin touches the bed. Has a temperature grid to.. You lay on it the way you naturally lay. Would be a great deal more effective without a cellophane sheet could have charged admittance for a waterslide. To make a long story short I'm getting a whole new bed to trial It has the zones . Just to find out all that I was telling them...To be fair the toy may real wonderful with an average size able bodied adult. The good news is the new bed with air & Zones

G-tube is not doing well this is serious guys my g-tube is leaking bad It's too big for the staff as it is barely manageable. I Need a Miracle...thank God that Him & Jesus with Holy spirit are in The Miracle Business...I could use one. There is no quota I've had many.

This time the colostomy bag is over both stomach holes...I'm not holding my breath could use a miracle. a 4th consult for a surgeon will be put in. Why the 3 surgeon and 2 G.P.'s have been useless so far Everyone agrees it must have an appointment not sending me williy-nilly to Emergency by myself is out. Some of the treatments poured out today the Medications I take. may or may do are not in agreement with my normal routine, medications are all working now will be not feasible with treatment *taking out both tubes is drastic when the doctor took so . The big one is I don't want to be in Hospital longer the 3 weeks to a month . Months in a hospital waiting it too much for me to with 2 open stab wounds which have had 3 years and best care still have not yet healed . I have a right to be a sceptic. But I have Hope I have a Family and a Laptop (If was case would temporary hold TELUS phone and internet and get a Bell internet card.I need to make things safe and comfortable so I can keep sane in a Sanatorium .
Michelle Laverdiere

Nine Orders of Angels

2009-03-12T16:15:00.001-06:00

This is not only Beautiful is interesting Flash.

In Memory of Aunty Carolyn

2009-03-10T18:07:00.012-06:00

I dedicate this to Uncle Wayne and Cousins Brent and Michael

I want to redo this post For My Beloved Uncle Wayne and my cousins Brent and Michael Z
I rededicate this beaytiful poem which has been giving me comfort with that part of Death I personally fear which is the pain suffering we face on this end
For Uncle Wayne the loss of His much missed Wife, my cousins Brent & Michael 's Mother and my Aunty....'Carolyn" Who passed away last year. Welove you...Michelle L

Go Down Death
James Weldon Johnson

Weep not, weep not,
She is not dead;
She's resting in the bosom of Jesus.
Heart-broken husband--weep no more;
Grief-stricken son--weep no more;
Left-lonesome daughter --weep no more;
She only just gone home.

Day before yesterday morning,
God was looking down from his great, high heaven,
Looking down on all his children,
And his eye fell of Sister Caroline,
Tossing on her bed of pain.
And God's big heart was touched with pity,
With the everlasting pity.

And God sat back on his throne,
And he commanded that tall, bright angel standing at his right hand:
Call me Death!
And that tall, bright angel cried in a voice
That broke like a clap of thunder:
Call Death!--Call Death!
And the echo sounded down the streets of heaven
Till it reached away back to that shadowy place,
Where Death waits with his pale, white horses.

And Death heard the summons,
And he leaped on his fastest horse,
Pale as a sheet in the moonlight.
Up the golden street Death galloped,
And the hooves of his horses struck fire from the gold,
But they didn't make no sound.
Up Death rode to the Great White Throne,
And waited for God's command.

And God said: Go down, Death, go down,
Go down to Savannah, Georgia,
Down in Yamacraw,
And find Sister Caroline.
She's borne the burden and heat of the day,
She's labored long in my vineyard,
And she's tired--
She's weary--
Do down, Death, and bring her to me.

And Death didn't say a word,
But he loosed the reins on his pale, white horse,
And he clamped the spurs to his bloodless sides,
And out and down he rode,
Through heaven's pearly gates,
Past suns and moons and stars;
on Death rode,
Leaving the lightning's flash behind;
Straight down he came.

While we were watching round her bed,
She turned her eyes and looked away,
She saw what we couldn't see;
She saw Old Death.She saw Old Death
Coming like a falling star.
But Death didn't frighten Sister Caroline;
He looked to her like a welcome friend.
And she whispered to us: I'm going home,
And she smiled and closed her eyes.

And Death took her up like a baby,
And she lay in his icy arms,
But she didn't feel no chill.
And death began to ride again--
Up beyond the evening star,
Into the glittering light of glory,
On to the Great White Throne.
And there he laid Sister Caroline
On the loving breast of Jesus.

And Jesus took his own hand and wiped away her tears,
And he smoothed the furrows from her face,
And the angels sang a little song,
And Jesus rocked her in his arms,
And kept a-saying: Take your rest,
Take your rest.

Weep not--weep not,
She is not dead;
She's resting in the bosom of Jesus.

James Weldon Johnson

Regina Spektor - The Call From Prince Caspian

2009-03-10T16:34:00.001-06:00

I'm not the only one with no comfy bed issues!

2009-03-04T20:24:00.003-07:00

The Real Princess

There was once a prince, and he wanted a princess, but then she must be a real Princess. He travelled right round the world to find one, but there was always something wrong. There were plenty of princesses, but whether they were real princesses he had great difficulty in discovering; there was always something which was not quite right about them. So at last he had to come home again, and he was very sad because he wanted a real princess so badly.

One evening there was a terrible storm; it thundered and lightened and the rain poured down in torrents; indeed it was a fearful night.

In the middle of the storm somebody knocked at the town gate, and the old King himself went to open it.

It was a princess who stood outside, but she was in a terrible state from the rain and the storm. The water streamed out of her hair and her clothes; it ran in at the top of her shoes and out at the heel, but she said that she was a real princess.

‘Well we shall soon see if that is true,’ thought the old Queen, but she said nothing. She went into the bedroom, took all the bedclothes off and laid a pea on the bedstead: then she took twenty mattresses and piled them on the top of the pea, and then twenty feather beds on the top of the mattresses. This was where the princess was to sleep that night. In the morning they asked her how she had slept.

‘Oh terribly badly!’ said the princess. ‘I have hardly closed my eyes the whole night! Heaven knows what was in the bed. I seemed to be lying upon some hard thing, and my whole body is black and blue this morning. It is terrible!’

They saw at once that she must be a real princess when she had felt the pea through twenty mattresses and twenty feather beds. Nobody but a real princess could have such a delicate skin.

So the prince took her to be his wife, for now he was sure that he had found a real princess, and the pea was put into the Museum, where it may still be seen if no one has stolen it.

Now this is a true story

Old Wounds can be Slow to Heal

2009-03-04T18:23:00.013-07:00

What a day my bed's been mapped by a $8000 Crazy carpet hooked to a laptop. laptop very high-tech. It Maps your body's pressure points and bumps according to the points yor skin touches the bed. Has a temperature grid to.. You lay on it the way you naturally lay. Would be a great deal more effective without a cellophane sheet could have charged admittance for a waterslide.

http://www.hill-rom.com/usa/Surfaces_Adv.htm

To make a long story short I'm getting a whole new bed to trial It has the zones . Just to find out all that I was telling them...To be fair the toy may real wonderful with an average size able bodied adult. The good news is the new bed with air & Zones

G-tube is not doing well this is serious guys my g-tube is leaking bad It's too big for the staff as it is barely manageable. I Need a Miracle...thank God that Him & Jesus with Holy spirit are in The Miracle Business...I could use one. There is no quota I've had many. I'm sharing this who also struggle a long time witha going nowhere health Issue. You are not alone.Kep-on-Day to Day

This time the colostomy bag (for my gastonomy stoma not a colostomy stoma)*like my air-sickness bag ;)* yucky but contained under my shirt is over both stomach holes...I'm not holding my breath (I guess I could not anyway, I'm on a ventilator )lol could use a miracle. a 4th consult for a surgeon will be put in. Why the 3 surgeon and 2 G.P.'s have been useless so far Everyone agrees it must have an appointment not sending me williy-nilly to Emergency by myself is out. Some of the treatments poured out today the Medications I take. may or may do are not in agreement with my normal routine, medications are all working now will be not feasible with treatment *taking out both tubes is drastic when the doctor took so . The big one is I don't want to be in Hospital longer the 3 weeks to a month . Months in a hospital waiting it too much for me to with 2 open stab wounds which have had 3 years and best care still have not yet healed . I have a right to be a skeptic. But I have Hope I have a Family and a Laptop (If was case would temporary hold TELUS phone and internet and get a Bell internet card.I need to make things safe and comfortable so I can keep sane in a Sanatorium .I was reminded today that I still have a Right to say no. I still have some enpowerment left.
God Bless you,
Michelle

2009-02-26T15:44:00.000-07:00

http://www.youtube.com/watch?v=urlTBBKTO68

A place to Reflect

2009-02-26T13:33:00.010-07:00

www.blogtalkradio.com Rocks
www.dailyaudiobible.com

Thank You For Fourty, and Fabulous

2008-08-15T17:43:00.005-06:00

On July 6th, 2008 I threw a Big Reunion to Celebrate the special people who helped me reach 40. A guide post marking a point in my journey. My Birthday was in June but I had the Party after Summer Break. Dad hired a caterer;I hired a band. I picked the Homey Norwood Choice Center as a venue. Because my Norwood Friends residents were attending, I got a deal on rent ;). I had over 70 family members and friends. I am truely blessed. All my immediate Family came...ALL MY SIBLINGS BOTH FAMILIES...Including by lost adopted out, 3 rs older, only full sister; who refound me for a 2nd time after 10 years... from this blog in Fall 2006...(we met first time 1996, adoption discloser united us then...a promise I made to Mom but the timing was off then...we lost contact). All is well now. I only wish she lived in Alberta.

I'M HONORED. Thank-you Blogspot for this site. We have never been all together before Despite many issues...I'm a very lucky Woman.

2006-11-08T14:27:00.000-07:00

From a blogger:

Point taken, however, you mentioned the employer's portion of EI an CPP. This is something that you have NO WAY contributed, again it is taxpayer's money. I realize that you are not at fault for your disability and I'm most sorry that you are forced to cope with it. What I am not hearing though is any sense of personal responsibity..you got pneumonia because of a DATS driver...you couldn't complete school because of the high standards of the faculty...

Michelle's answer:

As a matter of fact I have paid into revenue Canada both as an empoyer and emplyee. I hadself-manged care for all those yes I paid into it. At the time it was cheap for the goverment to give me self-manages $ ...no middleman. It was a fair exchange about $20 percent went to Revenue Canada. Before 1995 the government exe.mpt people under $600 I did not have an issue paying but was hard to find part time help for weekends. The gov't budgeted me $XX and a portion went to my services in house. All costs were creeping so cut my hours back to accommodate. As far as I know the maximum aloud is the same as 11 years ago but wages have doubled.

At this point I only want an attendent 3-4 days for 5hrs. I don't need an Lpn. Much cheaper than Norwood staff. They can train anyone with common sense. Sometime make excellent attendants. If they ever opened a grouphome for ventilators would be cheaper with a good planning team. They have a model in BC and Sask which are thriving . Perhaps in the future. Paying a partime attendant would mean budgeting for government's portion of course. I had an excellent system after trial and error. I had a good friend who was a treasurer and I gave her free baby sitting would audit me monthly by choice, write out check for staff, Rev Can, WCB. By choice . I was allowed to pay her small bonus'. When homecare was established in 1992 ish. I had an awesome working relationship with her. Prior to this welfair was handling this 87-92

I have a progressive Disability call SMA I go through peaks and valleys. Perhaps you have had a bad experience with someone has given up but do you think people create there progressive disabilitied www.fsma.org Modern medicine has come a long way but not enough to save the many babies who die every year from it. My parents both from different cultures had no idea of the gene they were carring. My parents were told I would be dead before I was five.

I've learnt a great deal about my disability and try to prevet sickness but stuff happens

I was always prone to illness but have not had pneumonia in 7 years. I have had many accomplishments. Sometimes life takes different avenues. I have had to make choices based on the hand I've been dealt. Leaving University was the hardest thing I ever did. I wanted to be a teacher...so I volunteered as a teachers aide. It turned into a job for 6 years (paying rev canada..also for my attends..don't make assumptions )and was the school examination office. However life happens. There are times you have no choice in the cards you get. You can suffer, live with it or make a choice to make life better for other with similar experiences. Things change and the information I've had. Sometime had regrets from a wrong hands. But decision making is not easy. I always investigated before make a decision. I have never been so strong. Remember the internet was not yet in 1991 my last University year. to general public availiable to the average person and technology was still achaic then. Had I stayed the coarse the quota was removed the following year. I even asked the dean for advice. I had many physical barriers like heavy books and even using whiteout was a challenge. I did my best but the responsible choice was to leave. I did manage to pay back EVERY PENNY of my student loan when I worked.

You can fill in the gaps of my life with the information I have given you. You have to remember that you cannot know everything in my life by what is in the blog. I've had many joys and heartaches I chose not to share. So please refrain from making asumptions.

The Co2 poisoning was not a choice but I made a choice to deal with it. I live in pain daily. But I deal with it. Perhaps you have never met someone with a long-term disability. Trent I've been making decision for my I could have died many times over but I'm here. I have been making my own decisions since I left home with my mother's consent at 15. Things were not handed to me.

I'm a spiritual person and feel we all have a purpose. The resident council was loosing its power. At the time I moved to GSS I thought it was the end. The council was down hill nobody had any leadership so I filled the gap and became a Leader. Before I was trached I watched so many people just give up it was really sad. The ICU staff were amazed that Day 3 I insisted on getting put of bed. It really surprised them. I know laying around make you WEAKER ..The week I was back at home . I felt I had peaceful feeling of having a new life purpose one step at a time. I've had many mentors over the year some were on ventilators . I had never in my life seen this kind of Apathy as I witnessed at GSS they need someone to show them that people can make changes. There were people dying lack of care and sprit. I had to start somewhere it became a passion and gave me my own self esteem back. I have been for yeas building a net work

I started working on my own personally goals again. I feel now I've played my part as a teacher. Non-profit organizations and humanities are my interest now. Realistically I will never be able to work full time is currently physically impossible. I would do anything to but need to use the cards I've been delt. I've been take free credit courses in bible study for now. I already am an advocate. I just want to do it better. When you are shut-in It is hard to leave. I can't promise I won't fail. I might not be here next year but if you live your life like that you will live a long geriatric life. Taking on a full load would be unfair to anybody. but by starting by auditing courses but doing the reading and small assignments would be a start. How will I know if I don't try. Of course it means working at it.

2006-11-06T19:33:00.000-07:00

I seem to get a few people who letters writing letters may not seem like much. It has value because one is taking responsibly for starting something. A letter is a physical document which makes....at the smallest level make a reader contemplate the other side.. It gives someone a glimps of wearing someone elses shoes.

Just think of Christopher Reeve who had resources to be involved. He made a difference...Yes he was fairly wealthy...nobody ever questioned him on the enormous insurance cost...He could have laid back and wasted what life he had left. Perhap he over did it.compromising his health. But he tried and was famous with the money and a devoted wife. What would have happend if he was just a joe smith and no family.

The last movie he made was about another young brilliant quadrapalegic woman who used a ventilator. The movie was called The Brooke Ellis Story . The girl had the brilliance to earn scholarship and graduated College Valedictorian....(beyond my scope) HER MOTHER HAD TO LEAVE HER FAMILY to go with her. A sacrifice to the other siblings...I no longer have a Mom who would be in her 60's. I have to start somewhere.

The Ventilator Forum was all started by letter writing and got people together and putting our heads together. With the right people who have a little drive anything can be done. We had over 100 people. I strongly believe network is so important and when you are trapped and cant get out letter writing is a good start. It was 3 years of writing, talking, meeting and begging family to take me out to meet people.

I am not in favour of handing out money to people with disabilities who don’t use the money for what it is intended for. I won’t get into specifics but people who want a disability to get money. Yes as small percentage of people abuse the system. It goes the other way how many able bodied people do know who call in sick regularly when they what to hang out with friends or are hung over. There is always abuse. I don’t agree with it. But the unemployment rate is so low people don’t care if they are fired. I’m not asking for money for my pocket but money for an attendant…giving someone a job...paying EI, CPP WCB ohh yeah AND INCOME TAX TOO (Canadian Government Departments)

Also, regarding the CBC article, I was thinking about what the Alberta government did to people with mental disabilities. Yes they closed Michener Centre. They gave them a monthly check with little support they didn’t know what to do with it and ended up living in the street.

A gentleman asked me what I was planning to contribute to society beyond letter writing. After all writing is not contributing to society. Better not tell the journalist…authors, lawyers, Stephan King...so is Dear Abbey… All FIRED…all… out of work. NO CONTRIBUTION TO SOCIETY. I myself have contributed much time on committee's not just yakking but creating documents, planning internal events, problem solving, negotiating, interviews. I have been on committee’s all of my adult life. After my being institutionalized have been more than ever. I was the president of the resident council for 5 1/2 years and was involved on many types of council. During the move we met biweekly to plan. The ventilator forum was a result of my initiative. I sat on the Alberta committee of Citizen's with Disabilities for 5 years. I've done many, many hours volunteer before and after I had a job. I even tutored for free when I could. So I've been contributing for years. I think going shopping for my own toiletries would be a start but if I drive through a door an hook my hose so I'm disconnected I cannot speak. Telling a stranger heya... buddy!!! Is not even physically possible. would you mind putting my hose together . I'm a liability you see when your on a ventilator you can't even travel on public transportation alone as I'm a liability. I need help eating ect. I have been offered to do many volunteer potions to talk to school kids. (I'd do it for free if my Aide was paid)I could go volunteer ACCD'S office with my mouse (which I bought myself) and do computer work are going to see it a contributing or just the $150 I was allowed to keep out of my $350 wages? (you can now make a little more now but not much.)Have you also thought money for an aide would give somebody a job and over a certain amount is money being put into EMPLOYER'S PORTION OF CPP AND UI. not to mention.Imagine a world with no disabilities. Look at the job loss. Not just in caregiver, wheelchair venders, adult pads, Catheter supplies. All the ventilators get recycled for over 10 years. Every $ spent on me goes back into society in this country...every cent. It creates jobs generates business and yes it goes back into the tax system. But how many big tax breaks for corporation get spent oversea's expenditures, travel.

CBC Obstacles

2006-11-02T18:19:00.000-07:00

CBC release a report today http://www.cbc.ca/canada/story/2006/11/02/disabled-forum.html Disability Rights are upset that 25 years ago the government promised better inclusion for people living in long-term care. Well very little has been done. Well I've been slacking since the move so thought it would be a good reason to let our new reps here about us.

I also sent a copy to the non seated Alberta Progressive Conservative Rep Bill Stewart and Weslyn Mather (was my Millwoods MLA).

Sent: Thursday, November 02, 2006 3:17 PMTo: 'edmonton.calder@assembly.ab.ca'

Subject: Obstacles

Dear Honourable Mr. Eggen, (Mr. Hawn, Mr. Stewart, Mrs. Mather)

Today on CBC New they were discussing a report released 25 years ago. http://www.cbc.ca/canada/story/2006/11/02/disabled-forum.html called appropriately "Obstacles" as the promises made to people living in institution remain unfulfilled.

My name is Michelle Laverdiere I'm a 38 year old woman with a Disability called Spinal Muscular Atrophy type II. Until 2000 I lived in the community with Self-Managed care I went to University. And even though that program became to competitive for my health was had begun fail. I developed pneumonia when a careless DATS driver left the door open after picking me up from my Dec. final exams, After returning from 6 months recovery a new stiff 3rd year quota was added.I filled my longing to be a teacher by working as a teachers aide. But the cutbacks and health issues brought my disability again to progress 5 - 9 years later. My life stopped when I was forced to move into institutional living. The nice term "Assisted Living" Meant " NO MONEY" I struggled to get out asking strangers in malls for assistance that I before had my aide do.

I have had SMA since birth. Although I have always been an advocate most of my adult life but never really learned what it meant until I had to make a decision to use a ventilator. I was slowly dying of Co2 poisoning and decided my life was worth saving. At the time I thought would be the end of my life but to my surprise felt great. My life was not over;or so I thought. I was living at the Good Samaritan in Millwoods. At the time was the ONLY program for those of us on a ventilator. There were many, many problems from safety to inclusion issues. I became an advocate. My life had purpose again and wrote letters, papers and invited Millwoods MP & MLA's as well as candidates for providence and Federal elections. I was tired of residents basing their vote on issues which the TV deemed important. And posed the question; What are you doing for people with disabilities? Both the delegates and the residents learned a great deal from each other.

Last year at this time we discovered that we would be moving to Capital Care Norwood . We demanded to have a say, negotiating with CHA Norwood for 8 months on many things from safety to comfort. According to the Alberta Legislate website we fall in the Calder district. We moved in to Capital Care Norwood. May 2006 and found much has been improved for saftey and the faculty is lovely but may still be our prison.

We are now your headache Mr. Eggen! It appears that many of the safety issues appear to be being worked on. But the problem of inclusion is still a BIG issue. They have be addressed. I still have dreams beyond . I want to start by auditing class and talking and meeting real people. I was a member of the Organization Committee of the First ever Ventilator Assisted Living Forum. This was many of the many themes found (Transcripts through Canadian Paraplegic Assoc in Edmonton ) at the conference. But why are other provinces dealing better. Are not we the richest province?

So please assist us in making inclusion beyond the classroom of children but possible for adults in long-term care. As I asked the election candidates; "What are you going to do for people with Ventilator related Disabilities?"

My advocacy blog is http://www.mermel112.blogspot.com/ I've included 2 achieve papers I wrote as well as a recent article in CHA's "People and Places" attached (bloggers they are below)

Michelle Laverdière

Capital Health Athority "People & Places"

2006-11-02T18:00:00.000-07:00

In Oct 2006 Note the top portion is in reference to a different Unit located in the North Building

2006-09-14T16:43:00.000-06:00

Ventilator Conference

2006-09-14T16:08:00.000-06:00

I know I have not written since July. I needed a rant rest. I have been busy with a few great projects. I have some very exciting this happen this conference is one of them. This Conference is a result of My friend Gary McPherson (now in the Race for Premier of Alberta..can't think of anyone more qualifiedhttp://www.canada.com/edmontonjournal/news/story.html?id=44b1b17d-6205-4724-80fd-b9f9acec7c83&k=0 ) and myself writing emails to the Government on the Lack of Supports for those of us living with Ventilators. Gary was fortunate that the Ventilator Unit was on campus and did not have many of the barriers others now face. He has been able to do a great deal more with his life because of it. I think the conference will be a good way for the government to access the situation. The dedline has been extended until Sept 26 so even if you want to go last minute you have time yet. Please submit your registration.

2006-05-28T19:09:00.000-06:00

Well, I moved Wednesday, May 10 I know some of you are wondering where or how I am. I have been hooked up to the phone and internet by some miracle and some aggravating moments before my move with Telus.
It was a little bit rough. Unfortunately, I was physically weak with my g-tube[Michelle's note] issue March 27..ian update isn progress, which is still healing. Norwood is lovely and my room looked like a honeymoon suite. It does not look like a hospital room even the beds do not look institutional. The facility gave us beautiful gift baskets. They have all wonderful X-track ceiling lifts . The management is so pleasant and bending backwards to work out our issues. Anju Sharma the best part of GSS is a best practice who has been with the program since the Abrehart is so caring and been working with new staff in training with vents and communicating with us. The RT�s are all the same and have been a Godsend throughout all this going beyond there scope of duties.
Norwood housekeeping has helped so much too on the first few days and cleans daily. Moving my stuff and packing were hard on me and the GSS manager was supposed to get movers to help. Brad, Cathy (another residents wife) I both heard this from CHA and Norwood. GSS was given the funding and responsibility. Sarah, the dippy GSS manager told me 3 days before it was up to friends, family, volunteers and staff. Thank God I was almost packed. Three wonderful GSS staff finally finished after the other four residents left. Cathy said that a note was left after the fact right before the move. Because the date was moved she was not able to be here for the move.
To top things off GSS was not replacing people calling in sick it was getting really bad. One day 8 of the 4 caregivers for the 30 residents on respiratory showed up. I know they are so cheap. They will not pay overtime for those willing to come in. So I know was the right thing to move us. They will be loosing many caregivers soon. The GSS caregivers that were still there should be commended in helping me the last 24 hrs. Betty, Lasha, Doris and John were the Volunteers who helped and Auntie Colleen, Carolyn, Maria, (saved my sleep the last Tuesday, came to say good-bye and feed me supper was enlisted) (Cleo�s Friend) Dad and Darlene all did a huge Job.
I am so glad that my Friend Mike packed & moved my electronics as well did a beautiful job setting it up again with a brand/new 2nd Samsung Monitor (built in TV) that he found at a bargain. I purchased it a few weeks ago�It is so SWEET!�It is mounted up on the new Norwood ceiling mount and is easier by far for me to use my computer in bed. Auntie Denise, Lori, Dad, and Darlene helped unpack but there is lots to unpack and tons to do yet. So I still need more help which would be greatly appreciated. It is going to take some time to make it feel like home
The hardest thing was that all the LPN caregivers are new. They had only 2 days hands-on at GSS and not always on their correct shift. My first morning was so hard. So are still very rough and do not know how to handle or balance me
My room is so pretty that my Dad does not want to put any holes in the walls. So he bought me some new shelving and gave me some excellent ideas. He is currently painting and redoinh my cuoboard to match the shelves I�m glad he is so excited about it I made a little kitchenette area my living room area needs work but no longer see the mountain of boxes. Auntie Colleen is dry-cleaned my sofa cover so it will look fresh.
Things are going so well the new staff are quickly getting to know my care and sort out important details. It is going better than expected. The first week was tough the first morning was rough. It takes a lot of energy. This week was much better. A few staff who had in the past worked in Long-term care do not like taking directions but are learning that the have no choice. There are only a few. They are mostly a fantastic group happy to work with residents who can talk. Managment is extremely supporve. The food is quite good to. They also created a small menu if we do not like the special. I however am just taking one day at a time.
Michelle

LEGALIZING PHYSICIAN-ASSISTED DEATH:

2006-05-06T19:31:00.000-06:00

LEGALIZING PHYSICIAN-ASSISTED DEATH:

It is a very good article from WWW I feel very grateful that I was able to choose life not everybody is able to choose. I wish some things were better but feel l still have have a purpose to life. I can be a voice, teach comparison, love my family, have a life it's still me, and I value it. I am on life support but still have dreams and goals and may live a long life. Yes I advocate for improvments and I'm still learning. But would not change my choice of life. I kind like being me.

I am still working on healing my g-tube. It's been an adventure of trial and error an hopefully finish that chafer soon.

I am in the Middle of moving with all 8 of the GSS residents who are trach-ventilated. It feels sad to move into a complex continuing care , called Norwood Capital Care Centre (see photo) from assisted living and some others are upset. It is connected by tunnels to The Royal Alexandra Hospital (large acute care..Where I was born), The glamorous Rehabilitation Hospital/School (my elementary school..Played hookey and went AWAL through the tunnels...occationally) and The Hys Professional Building. I feel like I'm going home and am getting more excited about the Big M. Day.

The Norwood has been total supportive negotiating every 2 weeks for 6 months our rasom lists. The region is spending big bucks to start the 16 bed project in time may expand to the entire floor. I may even get a volunteer to help me blog. This all is promising. I move Wed, May, 10. I think will be challenging at first but worth the disruption.

I have been meeting monthy regarding the First Ever Edmonton, AB ventilator conference. It stems from our letter writing. It's very exciting. I am working with my mentor Gary McPherson www.garymcpherson.con used a trach-vent for over 30 years but trained how to Frogbreathe using voluntary muscles so NOW ONLY uses a vent with mouth piece while sleeping. We are also working the New provincial Office of Disabilities and a few other organization. We have a wonderful hotel booked it is in September 2006 all the speakers are almost booked. I will blog the details soon.

Blogtoon frm Zit

2006-05-04T14:12:00.000-06:00

Blog-toons

2006-04-21T16:38:00.000-06:00

This cartoon from Zits is to cute

Alzheimers Disease Blog Articles Directory

2006-03-28T20:10:00.000-07:00

Alzheimers Disease Blog Articles Directory

Even though I don't have Alzheimers quite yet There are some good tools here. Thanks I am recouperating from my g-tube reloacated. It wil be an 7interesting medical problem solving event. I'm optimistic.

Of Almost Olympic Proportions

2006-02-15T23:19:00.000-07:00

Of Almost Olympic Proportions My younger Bro has been into broadcasting ever since he could create his own radio programs with his cassette recorder. He is doing his dream job working with a broadcasting team for the 2006 Winter Olympics in Italy. An interesting read.

Blogthings - How Observant Are You?

2006-02-10T13:26:00.000-07:00

Blogthings - How Observant Are You?

I didn't realize that there were whole blog sites that had accessories that people could add to their blogs for free. This little quiz is the first one that I ever tried to experiment with. I thought it was a really cool tip. (it has absolutly no relevance to my blog but a little bit of fun for a break)

Memories. Present days and future flowers

2006-02-07T16:15:00.000-07:00

I am still waiting to get in again to the internist (but the last time healed before I saw him..I think he my think we are hallucinating) about my Houdini of a g-tube...Today on my way to my appointment with Dr. Mahood while in my van I felt a popping sensation in my stomach. We stopped and checked it stayed in..It was taped down well..I went to the washroom and Annette put in some dry dressings..and again when I got home looked fine (on the outside) .No word yet .. It was healed last week but tried to escape up again today. It was leaking and almost came out but had settled but later the rumbling was that my balloon had burst. I was lucky it stayed in .

On a positive note went for an appointment today to see Dr, Mahood for an assessment on my back. GOOD OLD DR. Brian GREENHILL (MyDr. who sort of retired since the 80's) I have known him since kindergarten he preformed all 3 of my spinal surgeries and a small hip operation and he happened to be the office serendipitously . He now consults Lawyers and Insurance claims. I guess he worked in Saudi Arabia for many years but had to come back to Canada due to the turmoil there. I last saw him around 1981-82 and Dr. Mahood (Greenhill's former student) currently partners with Dr. B. Greenhill's son) in 1998. Dr. Greenhill indecently was the Dr who diagnosed Cleo (still beloved ex-momp Mon #2) when she had her major car accident in Hinton which fractured he lower back. He was one of the worlds best surgeon and always was flying away to other countries to perform surgery.

I went mainly because Dr. Murgi and myself were concerned about managing pain in the future as well as managing Osteoporosis; what happens if I live until 65? Should I be doing something else? There is a spot around right scapula wpinched. WhateWhat what is causing it? (see attached photo) That I found out ,is caused by the top of the rod irradiation to the muscle but otherwise both Dr.s seemed pleasantly surprised at how well I looked and was doing. ..That was a reliAlso.also there is pressure on my g-tube should not be the main cause of my g-tube but did not want to speculate out of his field...After today I am not so sure. And..and However my body itself will not explode …yet….. from my frame collapsing on my organs ...Whew. ...Although the rods curve the are not falling aAhoy yesyesssss…after being in over 25 years they are still keeping my internal organs protected…wow…yeah. I am a tough old bird.

I am taking oral & nose spay calcium. Dr. Greenhill looked (My Mom always liked him) slightly older but he looked Distinguishedtinguished Grandpa type. Dr. Mahood said that, he and Greenhill were both extremely happy to see me. My friend Mike drove because I could not get a booking for DATS even though I called on the earliest Day I could book . Apparently they were swamped with calls before me. I called immediately after I got in my chair so could not have called any earlier They sent an LPN (Annette) with me which was good for my dignity to have during the exam and gave Mike a chance to learn how to work my van, lift, etc with worrythe suctioningsuctioning. My chauffeur in training.

.Last Friday, I had x-rays at the Glenrose and also has a sticky time getting a booking then as well (I thought they DATS 90++ Dats buses the City of Edmonton purchased last year..They were using less than half). So I took the LPN (Johny) for a trip down memory lane as we had 2 1/2 hours Before our pick up timeaWOWIt is the same old place with the exception of s to a few areas. I saw my old kindergarten…grades 2..3..4..5..6 classroom..The lunchroom (now a teens centre)..Courtyard...Library…Station 201 …The Gym & pool were closed .

Since the orthopedic appointment was so close they gave me the x-rays to take with me. I peeked and Mike got a photo of one ocan best he can2xxatrium coffee 2x atrum located on the 3rdiful atr3rddfloorhe 3rd fpart. Ityhe newest part.It was a nice day.

I am not sitting well though during the x-ray because the technician (who was the most experienced one in working with someone like myself that I have had in years took only 2 shots total front & lateralÃ…no booboos all in 15 min) and had t put the plate be hind me. Johny had to support my trunk so my head flopped forward. This is otherwise fairly close to the way I sit otherwise.

Also I have been invited to participate in the planning of a ventilator conference hosted by the Premier's Council on the Status of Disabled Persons and The Office of Disability Issues. The Idea Stemmed from Gary McPherson and my letters on the issues and advanceVentilators UnfortunatelythUnfortunatelyytors. Unfortunatly the sudden passing of Ewen Nelson a few months ago also helped catapult this venture but has validated many concernEwen a model raised. Ewemodella great role modle for those of us with disabilities I will try to compile a tribute to him from some wonderful emails sent by those closest to him. The committee are a great group of professionals, consumers, and advocates who are planning this. I usually feel lost in such a group this cause is something that I feel passionate about. My insite from my living with this situation me at eapositivesvaspectsspossitive To goects of living togh the vent how tos, tips and hopefully lead to further planning and advocacy. I will bring you more info when I know more.

Capture the Moments...

2006-02-06T14:30:00.000-07:00

Capture the Moments... My volunteer Monazzah has a wonderful web page.

Official Google Video Blog

2006-01-23T14:52:00.000-07:00

Official Google Video Blog I want to learn how to video blog..perhaps I we keep up with my posts.

Blogger Buzz

2006-01-23T13:56:00.000-07:00

Want to create your own blog? Blogger Buzz is a good start.

A presentation from A.C.C.D. Re Modified A.I.S.H.

2005-12-24T19:20:00.000-07:00

I thought I would share this with you.

Alberta Committee of Citizens with Disabilities

Good Morning, my name is Bev Matthiessen. I am the Executive Director of the Alberta Committee of Citizens with Disabilities. ACCD is a provincial organization that has existed for over thirty years. It is Alberta’s only cross-disability provincial advocacy group, managed by people with disabilities. ACCD is also actively involved with the Alberta Disabilities Forum (ADF) and is the host agency for the ADF.
Today I wish to speak to one area of concern to us. The modified AISH Program. As you know recipients of modified AISH live in care facilities. While the recommendations I am going to give you outline improvements that could be made to the existing modified AISH Program, the real concern is that many AISH recipients have no choice but to live in care facilities because they are unable to receive the supports they require to live independently in the community. This results in separation from family members, reduces choices in daily living, hampers full participation in the community, and fails to afford a satisfactory quality of life.
While the recommendations listed here will assist recipients of modified AISH to have more disposable income and get their medical needs met, these options must be made available in the community through increases to home care and other supports that would make this possible.
There are questions about the validity of the modified AISH Program. Why do some individuals with disabilities have their needs met, such as those living in group homes, and still receive the full AISH amount? Why
are individuals with high medical needs being penalized by being forced to live in care facilities and given so little income support while others receive the full AISH amount and are living in subsidized housing where they pay 30% of their monthly income for rent?
Observations:
There is a need for clarification and/or change of policy on which care facilities are eligible for modified AISH Program funding (e.g. long term care, assisted living, hospitals, etc.).
Government pays the facility a fee of $1,277 per month for the modified AISH Program recipient’s housing/food/medical care.
Recipients of modified AISH receive the same health benefits as other AISH recipients such as basic prescription drugs, eye care, emergency ambulance, AADL, Alberta Health Care Insurance, dental care, and essential diabetic supplies.
Recipients of modified AISH will receive the supplemental benefits which will be given to all AISH recipients in October 2005 (e.g. school supplies for children, some medical supplies, overdue payment for utilities, diabetic and special diets for medical conditions, special transportation, and allowance for guide dogs, etc.).
There is a facility fee charged to some recipients of modified AISH.
Recipients of modified AISH did not receive the $150 per month increase in the living allowance that other AISH recipients recently received ($100 on April 1, 2005 and $50 on April 1, 2006).
Recipients of modified AISH receive $175 per month.
Personal items (e.g. shampoo, deodorant, over-the-counter
medications, toothpaste, toothbrushes, hair brushes/combs, clothing), dishes, furniture, mattress, bedding, towels, cleaning supplies, food (other than what is provided at the facility) and some medical items (e.g. trach sponges) are not covered. Many struggle with laundry, haircuts, and nail care costs. Personal items can also go missing more easily in care facilities than at home (e.g. many people report that clothes are lost in the laundry).
In addition, other items such as personal care attendants, telephone, transportation, computer, cable, internet, and costs of university courses are not covered. Many facility recreation/social outings are not covered, and therefore can lead to exclusion of recipients of modified AISH. Recreation and social opportunities have decreased in many facilities leaving residents to seek and fund external opportunities on their own.
Cleaning services are not adequate in some assisted living facilities (e.g. fifteen minutes per week).
Access to rehabilitation services or holistic therapy is not available to recipients of modified AISH.
When individuals who are severely and chronically mentally ill are hospitalized for more than 90 days, they are put on modified AISH. When this happens, they are no longer able to pay for their housing in the community. At the same time, they must find a place to store their personal items, etc. When this person is released from hospital, they must start all over again to find suitable housing to reestablish themselves in the community.
When an AISH recipient has to move into a care facility, it is usually done quickly because a bed has become available. This is costly to the AISH recipient because a minimum of a month’s notice (usually two) must be given in the place where they are living. Therefore, they lose their damage deposit. There are no extra dollars to assist with the move (e.g. moving expenses, packing, loss of damage deposit due to insufficient notice of move, paying rent in both places in one month, etc.).
There is no policy for how recipients of modified AISH would be treated if they were employed.
Personal goals and aspirations of recipients of modified AISH are not taken into account. Many cannot reach their full potential because there is a lack of funding and disability supports. The needs and aspirations of young people on modified AISH are not taken into consideration. Therefore, many recipients of modified AISH do not feel they have the ability to fully participate and contribute to society.

Recommendations:
1. That people with disabilities be given adequate funding and supports to live in the community. Therefore, there would be less need for modified AISH.
2. That the recipients of modified AISH receive the $150 per month increase in the living allowance that other AISH recipients recently received.
3. That a study be done to find out if and why some medically necessary items are not covered (e.g. trach sponges). Have these items covered either under the facility fee of $1,277 per month or under the new supplementary benefit’s list.
4. That rehabilitation therapies (OT, PT, RT) be provided to recipients of modified AISH.
5. That financial assistance is provided to AISH recipients who must move into a care facility.
6. That assistance is provided for individuals who are mentally/physically ill to reestablish themselves after a stay in the hospital that is longer than 90 days. The 90 day limit should be removed and extended to six months. At the six month mark, decisions could be made on a one-to-one basis with consultation with the person with the disability.
7. That a fund be set up so that recipients of modified AISH can apply for financial assistance for specific items (e.g. personal care attendants, educational pursuits, lawyer’s fees for making out a will, recreation, transportation, or other items that would enhance quality of life).
8. That a policy be created that answers the questions about how recipients of modified AISH are treated if they are employed (i.e. $400 employment exemption).
9. That research be done with existing recipients of modified AISH to determine their personal goals related to community involvement and community contribution.
10. That the realization that recipients of modified AISH can and do contribute. Funding and supports afforded to them should be viewed as an investment.

Thank you very much for giving me the time to make this presentation. I will leave a copy of it with you. Are there any questions?
July 27, 2005

2005-11-05T14:48:00.000-07:00

People on Ventilator Crises in Alberta - Is the CHA attempting new beginning?

At a meeting I attended last September I learned that the place of living was the only facility in all of Alberta where somebody on ventilator to the. I have only been the ventilator for two and half years but this revelation came as great a shock.

History:

Oct 1995 the Millwoods Good Samaritan Assisted Living Centre opened after GSS made a bid to build and house the last vented residents from the old Abrehart Polio Centre. The bright cheery building offered a homelike environment. All unit were private (very good for infection control) and were in the style of bachelor style with kitchenettes and private bathrooms. The common areas were designed in a county manor style. One of the best features was that food was delivered in a resultant service of the dietary aides, were like waitresses with a full menu of selections. Some were very happy to move here but there were a number of issues that were never properly dealt with.

It has been indicated by many that the Good Samaritan had no idea of what the undertaking of the project meant but seemed to have good intentions, however the GSS had many surprises in how to care for this very unique clientele and grossly underestimated the Quality of Life issues and safety process involved. The building layout itself was designed for other assisted living centers but offered many challenges in safety and design issues, On the positive side, The GSS involved the residents and staff in management issues such as policy making, hiring of staff possessions and some budgetary issues (This is no longer the case as of 2003)

I moved into Millwoods Centre in January 2000. I found things extremely difficult and staffing to the point it was unsafe for everyone especially those ventilators. I became extremely anxious and was severely clinically depressed (I had bouts before but never like this.) This seemed to be the norm and almost all my friend needed to be medicated. My fears were well founded as it was very common to wait 1 ½. It also did not make it any easier watch many of my GSS Friends die. I wrote a paper on this two years ago and will be happy to share this with anyone who has not read this, so don’t need to rehash it I was not trached and ventilated until spring 2003.

Good Samaritan’s policy has always been to only accept residents who can push a call bell and/or “Telecare” (A LIFELINE unit dials an operator at in my case the Good Samaritan central office who dispatches 1 - 3 designated helpers to assist to check on that person. In my case the facility where I live is my only necessary contact otherwise living in the community a family member, landlord or friendly neighbor within the area of residence with a key.. Telecare are also able to contact 911 if need be and have important information to relay the emergency team) Now 80% or more residents have progressive disorders ALS, MS, NMD, Parkinson’s etc. Spinal Cord Injury, OCPD, etc. Although most of the residents are under 65 the can progress quite rapidly to the point that they can no longer press a button, so is not possible to use in an emergency. They were still aloud to remain at their own risk. Families were kept informed and staff did everything possible. Some family had to spend 5 – 24 hours peer day to help supplement care due to insufficient staffing However, the CHA and the wife of a man I will call Nick pressured the GSS to break the call bell rule as long as the CHA provide the man a private attendant.. This created an uproar namely with resident council and the exhausted family-member-caregivers who were fighting for more care all along.

That fall GSS announced at the Resident/Family Council that the only overnight RT position was discontinued, The RFC decided that a meeting for all the parties involved was necessary. The Meeting was very heated but GSS held there ground. Part of the problem was that the staff were afraid to call the overnight RT because they were warned not to unless it was life threatening. Overtime would need to be paid out. So any staff was reprimanded if the event could have supposedly been handled by the on duty RN. Some situations are difficult to predict and often the RT was not called when they should have. The statistics did not reflect this. So the ON RT could not be justified. There were a few rumored court cases at the time shortly before I moved into the center.

There have been many accidental deaths here since GSS has pulled staffing since the Centre opened after staffing cuts. 3 years ago after cuts were made a man that I will call Mr. Black of having his hose disconnect while he was in the washroom and died after 20 minute of being alone. A MAGOR INVESTIGATION was then conducted by C.H.A.. The GSS was then ordered to hire more staff. Mr. Black died due to insufficient staffing because they took too long and were busy at the time he was disconnected. Prior to this which began shortly after Centre opened. The Good Samaritan society made heavy staffing cutbacks against the recommendations of the pulmonologist specialists and Resident Councils.

I was president from June 2000 to June 2005 (and still act as co-pres June 2006) until Who eventually left there consolation to the GSS .So Capital Health gave GSS an ultimatum to hire more staff and a bit more money. Things got better or it may have affected my choice to use a ventilator when I went into respiratory failure.

Resident Councils were told the new injection of more funds after Mr. Black’s death were never enough to support the demands of the CHA. The also want a Pulmonologist back on consult. But GSS cannot find one in there Price range. In a request for more money GSS has been refusing more residents on ventilators for over 2 years and has been filling empty ventilator unit with other respiratory residents. There are only 8 out of 18 people of ventilators left. A long time non-ventilator resident after hospitalization was made to wean off the ventilator before being aloud home.

Present situation:

Good Samaritan have stated all along that they spend more on care then they receive from the provincial government. They are $7,000,000 in debt. (In fact, cuts are currently being made at this time he death benefits. So staff are picketing outside. GSS claims that their benefits are the largest in all Alberta) They do try to give quality care. The staff on most part give excellent care. However cannot give the care needed with their current resources. The pulmonary specialists which are mandatory refuse to consult for less than their usual amount due to lack of trust of GSS. It is impossible to build a bigger ventilator program here. It is a logical to expect GSS to need to cut costs. They always say not at the sacrifice of quality care. This is not possible, as those of us living on the frontline know from experience.

The original Abrehart was where Gary McPherson the first chairman of “The Premier’s Status of Person’s with disabilities lived for many years with a ventilator. He had Polo as a child but as an adult championed for rights for people with disabilities and awarded the “Order of Canada” for his work. He married and moved away from the Abrehart Centre but kept in contact with his comrades who have all passed away after moving to Millwoods Centre. I became acquainted to Gary at an inclusion conference February 2004 (I was ventilated at the time) who knew of me through his past attendant who happened to be on of my students. I also met many of Gary’s Abrehart. My new alliance with him as h has been a real advocate and friend throughout this past year . I contacted him shortly after the decline in the number of ventilated residents and heard a number of rumors regarding the move of the resident on ventilators.

We have as a result been through many facility managers. The chaos has caused a high turnover. The latest manager rules with an iron hand and has NOT been an advocate. Alice Sears her supervisor (Director of Operations) has been a tremendous support. but has had her hand tied. Neither of them had work for GSS at the time of the man I will call Mr. Black’s accident . The investigation by The Capital Health Authority and Alberta Health and Wellness.

I am very involved with Capital Health for a few weeks because Gary McPherson had started calling around and talk with . They are having a big meeting with CHA, Good Samaritan Society , Top Pulmonologist. I wrote Iris Evan last year after a Best Practice Nurse from Norwood spent 3 orientation days with Anju Sharma on trach/ Vent management. This sparked many rumors and much curiosity among the staff and residents at GSS Millwoods Centre. Initially, I was told that there were no plans to move us to Norwood.

I had a meeting with Rob Lougheed in early September (Alberta’s Minister assigned to disabilities) a few months ago and invited Teren Clarke and a few others. We were discussing issues faced at the Assisted Living Centre including Modified AISH a few moths ago to at Good Samaritan Society Millwoods Centre. And Teren from CPA , Alberta Disabilities (former MDA). Alice Sears and Carrie Corsiatto from GSS, Carmen Binder, from CPA Brad Meakins another residence who is vented is also very well spoken. Another resident from Lynnwood was there also to speak on Modified AISH. Before the meeting I calculated the number of ventilator resident spot we had 16 and was blown away that

Teren from her experience with The Muscular Dystrophy Association of Canada has a great deal of background in respiratory issues and had work on The InSynchrony study regarding “Progressive” Disabilities (MD, ALS, MS, PD) was able to speak on all the issues including Health, Safety, Quality of Life and Community Participation. We explained that there were minimal programs for those who were on ventilator. There are no rehabilitation programs for people on ventilators. Even the Glenrose will only take people on ventilators. Many people I knew of decided to go back to the U of A to be weaned off the vent in order to get rehabilitation. This had had some sad results. I did not know that a few selective chosen have the option of going out of province to BC for rehab.

Teren was very informative and Rob received a great deal of information. Although Gary was not at that meeting he followed up after I wrote Rob and thanked him and quickly summarized key concerns regarding nor AISH and large holes in system for people who are ventilated in all areas from safety to quality of life.

Gary McPherson followed up on some of my new information. We had spent much time in correspondence discussing that the Alberta Government has no other Trach vent program and there are 0 rehabilitation facilities for this population. Gary was instrumental at speaking on behalf of the residents that may be moved when he spoke to Marguerite Rowe and Rob Lougheed. We knew that despite G.S.S.’s attempt to retain a pulmonary specialist and were aware that CHA would want us (with ventilators only) to move. If this was so then it was of utmost importance the we the residents contribute fully in the development of the unit.

It was insistent that I discuss this situation with my fellow 8 residents and staff. I wanted to gather as many concerns as possible as I am currently the only person with a vent on resident council and wanted to reflect everyone else’s concerns. I talked with most residents and a few staff. I tried to be frank with pros and cons. GSS was not happy that I eid this and I received a nasty letter. I explained that the problem stems from the fact that there are many holes in the entire provincial system in the different level and stages of care
.
Because I have been so vocal about “nothing about us without us” Marguerite Rowe personally called me to assure me that even though a move was immanent that the residents involved in all aspects of the new program at Norwood Capital care Centre. Helene Rust met with me and we discussed concerns and quality of life suggestions. The final meeting was held on October 12. The CHA kept their promise and a meeting was held with all the respiratory residents. Bernice Y and Joanne Duster Becker from the GSS board, Sarah Miller GSS Millwoods Manager, Helene Rust from the CHA , Jennifer CCC Norwood Manager were all present along with all 8 of the remaining 8 of the residents with ventilators the 2 residents with only tracheotomies and a few residents with general disabilities.

The announcement was made that all 8 of the residents who are ventilators will be moved to Norwood Capital Care centre in 6 months (this would be around April; this includes 2 residents who only use a ventilator nocturnally. The decision to make this move came directly from Sheila Weatherill herself along with Neil Wilkinson at the meeting. Although I had tried to warn as many residents as possible the news was still shocking and very upsetting. Many I suspect were in denial. The 2 residents who are trached without ventilators will remain here at Millwoods for the time being. There will be a 16-bed unit

Tunnels to the Royal Alexandra Hospital, the Glenrose Hospital, and The Hys Centre connect Norwood Hospital; would give total access for medical and rehabilitation. As well there are many amenities such as big machines, restaurants, and gift shops, which are not available to the Good Samaritan by way of tunnels and therefore be easier to access during the winter months.

The original Norwood Center was a traditional long-term care center. The residents were mostly elderly people who needed full care. A few months ago and announcement was made that Norwood to be renovated and turned into and complex care center. So many of the people currently live there will be moved or have already moved out. In fact they want a clean start on a nursing model and want us to be involved in the developing of the model. I had read the report from Alberta Health and Wellness called “The Seniors Report - What We Know and Heard" published September 2005 and thought that this could in fact be
opportunity.

I have insisted from the very beginning that the residents MUST have a great deal of input into this project. The people from Norwood really want to make this situation work for us. In fact I do not think the plan on making this into the usual traditional long-term care center and seem to want to make it. The Capital Health Authority has agreed that they would cover any costs that would be associated with the move including moving track-ceiling lifts and any other of our belongings. All the rooms are private of different sizes all having private bathrooms and so rooms will be allocated on need rather than costs. The social workers from both facilities will work together to ensure that the costs per month will not create a hardship. People on AISH will not be affected as. Internet and cable may even be included. The manager was once a dietitian and has some very good ideas regarding our concerns about food. I pointed out the food is more than just nutrition it, brings quality of life and is a social and cultural importance.

I personally have very mixed feelings about this I feel quite torn about this as this is a very lovely building and I have built a home here. However I am definitely aware that the Good Samaritan does not have the resources to adequately manage this program and people’s lives are at stake. Although that many people have complained over the years about like a safety and other issues regarding the Good Samaritan Mill Woods Centre, it has become home to many. There were many concerns of what we may lose in regards to our excellent staff, restaurant style meals, and homelike environments. Some of us still want to our kitchenette One couple is mostly concerned that they have a hot plate and a cook it a little room for their family. Norwood is definitely going to try their best to accommodate everybody's issues. At our meeting last week we made it very clear that it was a priority for us to remain with the ability to direct our own an care. It also sounds like we will be able to bring most if not all of our things, including our furniture countries, beds desks, tables and whatever we happen to have. They were very interested in our suggestions and will do their most to accommodate. However many decisions about these details are far from being finalized.

For those of us that are still left have never had to deal with the real reasons behind the move. Reality set in for me that weekend when I had what I saw was a hear-attack I had to go by ambulance to the Grey Nuns Hospital. Let me first say that in my entire six years living at the Good Samaritan Mill Wood Centre I have never been ill enough to go to the hospital; therefore never asked to go. In fact when I had to go to the University of Alberta Hospital I didn't even know I was sick and had to be told to go after my doctor received some bad test results.

My illness on October 15, 2005 turned out to be gastritis along with low potassium. I had known that the Grey Nuns was not equipped to handle many of the cases from my center over the years. But reality set in when my doctor was on all week, wanted to admit me to the hospital. She had a bed available for me on her unit however due to my ventilator was not allowed to be admitted on that unit. I had been very sick that night and she wanted to make sure that I potassium was at normal level and that I did not contract pneumonia as a result of complications due to my gastritis. I was not sick enough to be admitted to the intensive care unit and the normal cases would have been admitted on the normal medical ward, however she was forced to send me back home. Although the Good Samaritan Mill Woods Centre has excellent staff they are not able to give intravenous fluids unless it's a dire emergency. There is only one registered nurse on duty at all times and know doctor in the house. My doctor could have kept me in emergency, however it is very difficult to do so and the stretchers were so uncomfortable I was in a great deal of pain.

This is been one of the reason for the high mortality rate at G.S.S. Mill Woods. Many times people are ventilators were very ill but could not get a bed at the hospital in. Later that next week my doctor asked me to advocate this to the other residents. I gave her permission to use my story as an example when other residents discuss with her their distress about the move.

Norwood also has a This Council but it sounds like we also may have a Council specifically for the 16 bed ventilator unit for people with ventilators. There are many issues that are yet to be ironed out with the Norwood Center regarding the move with their definitely very open-minded. We have had three meetings so far with Norwood with the entire group and the promise to meet with residents individually fairly soon. We will be having meetings regularly to iron out the issues that happen to come up but the move will definitely go ahead. My only hope that things are not too “good to be true”. Most of the residents of yet to come around to the idea of moving. So, I certainly hope the promises from CHA are kept.

So far things look positive and I think the other residents will come around if this happens. I honestly hope that this is not an end decision but the beginning. Most of the new Norwood is a transitional Centre for people to move back into the community and they surely hope that they intend on moving people back into the community in their own either homes or group homes. Many are worried that we are moving back toward institutionalization and people with disabilities being shut away as in previous times. However this is not seem to be the case, as so far as I have. I feel confident that Gary McPherson would continue to fight for us if this were the case. This would be something that will continue to advocate for. At least now there is a chance for people who use ventilators to get some sort of rehabilitation. It at least looks as if this is the case. This Centre has great potential for reintegrating people who use ventilator back society but time will tell. It will definitely of show the provinces motivations toward people with disabilities and a little while since this is the only facility in all of Alberta that will care for a person on a ventilator long-term. Perhaps if this project is successful it could be a model for the world who is moving towards euthanization ( http://www.notdeadyet.org ) as in the United States and in the Netherlands. I strongly believe that one can have a quality-of-life and live on a ventilator. So I hope that this project reflect this. I still have to bring up the famous question; “How are they going to include us in the community and What plans are in place to do this? There will be a great deal of work ahead but at least “it seems” they are on the right track…so far. I am at this point optimistic.

Big time changes down the Pike

2005-07-26T15:43:00.000-06:00

Going Backwards

Lots of things are starting to happen here at the centre Recently. Another resident that was labeled Âhigh observationÂ funding (bed ridden, cannot speak anymore) has died and coincidently we are getting a new call bell system. So one of the RESPIRATORY nursing attendantÂs staff positions has been pulled from the floor to monitor the call bells for 1 Â½ months, while they are installing the new system. They often use well trained/long term staff over new staff freshly graduated NAs to work the bells instead of the floor were their skills are needed. This was surprise announcement on Friday creating a very hostel environment for the residents and staff. There are too many secrets, going on,. Today I was floored when I finally counted, we have gone from 16 to 10 ventilator beds (over 2 years) only 6 are on 24 hrs 3 at night. Our manager felt we had TOO MUCH STAFF so was not a good advocate for the residents defend us to this upper management decision.. In a letter I wrote:

"Boy were they angry! I do not like it either but they do not have to take it out on us. I had to bite my tongue and be really nice and be kind. Hard to do when someone is cruel and disrespectful and pushing, shoving and rolling there eyes pretending not to hear you when your totally uncomfortable. i couldn't wait for someone else to fipositionision. People who hate their job should quit. Many staff here have been that way for a while. It seems to have calmed down slightly (temporarily)and not be so tense this last weekend. It is a bit unsettling to wonder who is getting me up. The import thing is they can get me in my chair (without giving me guff) If I can have my proper care and necessary needs met."

There is talk of loosing more staff as of Aug 31. They claim they refuse to take any more residents until cap health get a pulmonologist as a consult. I am feeling this may be a ruse to get rid of the program, which is very expensive . Meanwhile staff whom are working at other facilities claim that people who are stable but on ventilator residents are shoved towards the back of the hospitals waiting in limbo. They are not getting little if any rehab. THE GLENROSE DOES NOT TAKE ANYONE ON A VENTILATOR. People have been weaned inappropriately to get there, later to die. We do not have opportunities which were once offered to Christopher Reeve and Gary McPherson . Other few time people, are sent home with insufficient recourses. Last Dec I met a grandmother whom had her 16 year old granddaughter living at home on a ventilator. I gave her my phone number but she never called but I got the impression that the homecare was minimal. There needs to be some long term planning.

IÂm feeling devastated as we are getting further away from full participation. I was making BABY STEPS towards proper care. NOW WE ARE GOING BACKWARDS AGAIN.

As far as taxpayers money goes (in case you were wondering), the cost would not have been a problem if the government did not sell off ALL of it's money making invebusinessesinesses such aUtilitiesilities of power, water, and gas for instant cash.

That would have also kept down the hidden costs whiinsanelyinsanly high now. This has driven up the cost of heathcare, social seretcesThent. then Funding would not have to have come from higher taxes but generated Income. perhap then I could have contributed.

Michelle

The Strength Coach

2005-07-19T15:11:00.000-06:00

The Strength Coach

My plug for "On a Roll"

2005-07-19T13:05:00.000-06:00

I watched this Documentary a few months ago. This has to be the best program I have ever viewed on Disability issues and deserves the award "Joanne" the producer had a hunch to film Greg Smith as he followed his own person journey to have his own national radio talk show (Airs Sunday nights) I either catch a USA Station on line or listen to it posted after online on his "Strength Coach " website listed in my sidebar.

I wish I had the foresight to tape it but I found it on TV while mindlessly surfing in Febuary. He I think that maybe he has has my disability a form of Muscular Dystrophy (The medical professionals always referred to SMA as MD and many still do as it falls under the neuromuscular disorder umbrella but I'm assuming) I'm only assuming as Brad makes a point that lables are crap anyway. I'm only meantiong this because his childhood biography is remarkably similar to mine. Also I found a link fo it on the FSMA website.

It was an excellent program because most films I've seen are very superficial and portray people with disabilities as heroes rather than people with everyday situations, jobs, marriage, sex, divorce, income, family, attendants issues etc. And with extra obstacles such as transportation. Joanne also show the darker side as well as the positive side of living with a disability.

Joanne has a a unique insight, being his Best Friend's Mother, a neighbor, who happened to get in studying filmmaking. He insight in Greg's family situations and struggle to become the great man that he is. (she is speaking on his strength coach program this week). She had a window into his world that a stranger would not have. Greg shared his innermost feeling and even discussed sex in detail. Many of his views I share. This movie is an excellent teaching tool for adults.

I hope that I can do the same by creating awareness and positive change. I too want to people with disables to challenge them to have patience (and lots of it) and perseverance in order to follow there dreams.

I hope the rerun it so I can tape it. I may just buy it when I have the cash. I give it 5 stars out of 5. It is worth the $50 (amarican currency)

Last week he spoke on his radio program regarding Bill Cosby's comments about Blacks in America. His reaction might surprise you and may apply to people with disabilities too. Listen to the program too it's really good and he has interesting and informative guests. http://66.95.19.43:8081/StrengthCoach/ (click on the previous Sunday or past Sundays archives at( http://www.thestrengthcoach.com/archive.html ) He also has a list of affiliate radio station some must me availiable to listen to on line.

Michelle

On Roll
"On A Roll" wins Independent Lens Audience Award! Ocean Springs, MS -- "On A Roll: Family, Disability and the American Dream," Joanne Caputo's documentary film about the life and work of disability activist Greg Smith, has just been awarded the National Audience Award from Independent Lens, the PBS series which introduces new documentaries and dramas made by independent filmmakers.The 29 programs in this past season of Independent Lens brought audiences up-close looks at some of the most fascinating places and people around, an array of stories that amazed, inspired and touched the emotions of viewers, Independent Lens announced on their Web site.( http://www.pbs.org/independentlens/index.html )The competition was tight, but the audience has spoken.Caputo's portrait of Greg Smith and family captured the hearts of thousands of Independent Lens viewers when it debuted nationwide on PBS February 15. Greg Smith and his family bared all in this unflinching portrait of a 65-pound man striving for the American Dream. Fueled by discrimination, Smith created "On A Roll Talk Radio on Life and Disability" from his power wheelchair in 1992. The father of three travels the globe in a new civil rights movement, but finds his own nations capital inaccessible - a minor challenge compared to living independently and having safe intimate relationships with facilitated sex."The Audience Award is very touching confirmation that I'm doing the right kind of work," said Smith. "I think it is a hint to media executives that mainstream America is eager for people like me to be presented in the mainstream media. The wall of exclusion for people with disabilities is eroding, and there is a universal curiosity and a desire to learn from our experiences and embrace the value and expertise we have developed from our unique lens.""The Audience Award is the tangible realization of what has been a daily acknowledgement from strangers everywhere I go. It is like another hug, warm smile or kiss on the cheek that have been a part of my daily life since the movie aired in February," he said. "Joanne's film touched people."As a severely disabled African American, who is an experienced, articulate broadcasting veteran and a skilled interviewer, Smith sees ramps to his own syndicated television show set in his future. His combination of perspectives gives him interesting license to address issues in ways others have never touched. He envisions a general issues talk show that inspires, probes the personalities of pop culture icons and challenges mass audiences to learn from his lessons of inner strength. What's next? Smith's Autobiography, "On A Roll: Reflections from America's Wheelchair Dude with the Winning Attitude" will hit bookstores in October, perfect timing for National Disability Awareness Month. He continues to host his nationally syndicated radio talk show, "The Strength Coach," which airs Sunday evenings at 11 p.m. Eastern Time on the Radio America Network. And Caputo and Smith will screen the film at The National Association of Black Journalists Film Festival at the NABJ Convention http://www.nabj.org/ in Atlanta, Aug 3-8. More than 600 journalists from across the nation will see the film and participate in a question/answer session with Smith and Caputo on Aug. 6.For more information about the On A Roll Documentary, Greg's autobiography or his professional speaking, visit http://rd.bcentral.com/?ID=3004276&s=115026296.--30--

Hope for a future

2005-06-28T17:15:00.000-06:00

-----Original Message-----From: Anonymous [mailto:anonymous-comment@blogger.com] Sent: Monday, June 27, 2005 12:01 PM Subject: [Mermel's Little Blog Cabin] 6/27/2005 12:00:28 PM

I have a question for you Michelle. You indicate that you wish to go back to school, however what would you plan on doing after this, do you plan on working? You and have already said school was too physically hard for you before, so what would be different this time? I hope you are not expecting the " stupid' taxpayers, as your friend put it to pay for this. Maybe your friend should think it was not the taxpayers would be paying his way? --Posted by Anonymous to Mermel's Little Blog Cabin at 6/27/2005 12:00:28 PM

Dear anonymous,

I am sorry it took me so long to answer your very good question? You have given me not only topics for my blog but an opportunity to answer what many people are afraid to ask thank you.

The truth is I really don’t have any guarantees about anything including the length of my life but I have to try otherwise I will never know the truth. So making this on the assumption that I will live a long-time. (and I am 37 but was supposed to be dead at the age of five) . Also the fact that I am already on the ventilator increases my odds of survival. Past experience has taught me that I learned best in an environment with other people.

As you know our society makes investments in things like it easy for children and so on. Our government has to start making investments people with physical disabilities as well instead of putting Band-Aids on the problem. When I was attending school and rehabilitation hospital there was much invested at that time in rehabilitation and self-esteem for those physical disability. Many of those people like myself when on to get jobs and led very productive lives. (some didn't but that happens in education too) Those that could not get paying jobs were involved and contributing in some fashion. Not asking for handout but an investment and the rate of people with disabilities is only going to increase. And many people don’t realize that they can have a life even with a severe disability. This is no longer the case and many people are mearly housed lately in Alberta as few programs that produce adults with disabilities who have self-esteem.

Christopher Reeve was a good example of what one could accomplish if they have excellent rehabilitation and proper supports in place. Because he had worked previously to his injury and his friends and family he was able to get adequate rehabilitation and technical aides to move on with his life this despite his injury. He may have overdid it as he died from an infection in its pressure sore which was acquired from those long hours of sitting. But he didn’t give hope to those who had none and proved what you could do with adequate supports. There is also a fine balance between health and employment which may be different for each person.

But currently in Alberta people on ventilators cannot get any rehabilitation without removing their trach first. so die attempting. And there are no education programs in place as well. I cannot go to physical labor intensive jobs so the only option is to educate myself. To be honest I would be a salary of the doctor or lawyer in order to offset a medical costs. But I am willing to put my whole heart into paying my society debt to society as best to my ability, but like Christopher Reeve I need the supports.

So I have to weigh my skills, my interests, and the reality of my situation, which I have not forgotten. I do have physical limitations but the physical limitations have given me an opportunity to spend a lot of time thinking about my options. I do have to take into consideration that I will need a lot of the supports in place even if I took correspondence. I have been working for two years to get a computer which is due to loving support of my friends and family.

My mother died in 1988 so I am well aware that they may not always be there. I have never married or have children, my father is 63 and I have one grandparent left. I have 4 siblings with their own debts who help when they can. Sometimes when people and injury or an illness late in life work in the past and gained access to compensation or pensions. This is not the case for somebody who had been disabled their whole life. I have to find a way do it myself as I do not have other resources. I’m not feeling sorry for myself I wanted to say this as many readers are not aware of this unless they have gone through similar experiences.

When I attended university in 1988 I was given a offered to pay for my courses and took a student loan instead. When I went to University I took the minimum of full time 3 w courses and used an old“Brothers” typewriter (took me hours especially fix typo..aaahh) then use a state of the art donated (not by government) APPLE II GS computer .

I’m proud to say that I paid that back out of my $300-350 over 4 years. But the government decided that $140 (deducted anything else dollar for dollar of my income.) was all I could make as working full time was not an option as my arms would give out after working.5 hours a day. I went to “Consumer Affairs” a free financial Counseling group told me my job was putting me in debt .

Despite my situation I am not a quitter, or lazy for that matter. I currently volunteer hard with 4 non-profit societies. As I currently do not have the physical stamina or enough education to earn wages high enough to support my enormous medical.

I abhor people on pity parties. As you are correct there are many people with disabilities who want to be victim and wallow in misery. Many have just given up as they have been given no hope. I want to bring some hope back to People who have given up and there are many people who live here that are palliative care and many others who are very ill do to MS, ALS, Parkinson OPD ect and do not very good prognosis’. I understand their situation.. I am so grateful that God has left me with my mind, my voice, my left index finger too type and lots of hope as many that live here don’t have any of these.

I was lucky to know of a man Who had Polio who lived 30 years in institutions. At that time people who lived on ventilators were fortunate enough to live on the university campus. He gave great things, wrote a book, worked for the government, and got married to one of his nurses. The pay for most of his nursing care now and his wife is able to help him. Meeting him when I was a teenager implanted seed of hope in my heart in me at an early age hope.

Like I said I don’t have the physical ability to support myself so I left with my mind which I’m thankful for. I however in order to have a job in which would get paid, I would first need to improve my educational skills. To be perfectly honest there is no way at this point that taking full time is possible at this point, however new technology make things that would never have been able to do before possible for me to at least opportunity to try taking open studies part-time.

My plan was to audit 2 part-time course for year including reading study material on PDF and home work . I would write down or essays but I wouldn’t get any credits either but it would be integrating myself back into routine. Its may take me a long time however. I would be trying. Nobody ever has any guarantee about anythinh. New computer technology advancements and a patient technIcal friend have opened many doors for me.

I really love working with nonprofit organizations that help advocate for other people so I plan on making my own curriculum by taking over the study to help those who need hope. Whether I suceed is in Gods hands but the important thing I that do my best. Does contributing to society have to have a $ value? Is it our right to judge others, which is something that I have to ask myself as I have occasionally failed on? Thank you anonymous for giving me the things to reflect on. This is honest. I don’t mind if you had any realist and positive ideas to help me on my journey.

Michelle

2005-06-27T14:01:00.000-06:00

Thanks Will. I will (no pun intended) post your comments in my blog.
Michelle

Food for thought

Hi Michelle,
I'm finally checking my emails. I almost never read the newspaper these
days; however, I stumbled across the "lame' usage letter. Basically I just
reacted and immediately fired off an email in response. I realised that was
coming off rather strongly/critically.
My concern is that far too many "abled" and "disabled" interests are
cultivating a type of "victim-hood" to get noticed political and socially.
Adjectives, unless maliciously used, are simply adjectives. I find nothing
offensive about an accurate adjective, i.e. My hand is deformed/crippled. As
I use it to draw rather well, write rather well etc.; calling my hand
"disabled" is inaccurate.
Regards, Will.

Food for thought

2005-06-26T14:18:00.000-06:00

I understand both points but I don not think Ewen meant disregard and rename the disability. Or intended to disregard that the person has a disability such as Person with Spinal Muscular Atrophy.(SMA) But rather Ewen was trying to make the point that you do not refer to a person as BEING A DISABILITY. He meant The Blind should be the Person who is Blind.

Because you would never call a group of tall people the talled, The shorties, the Over-weighted.

*Articles from the Edmonton Journal

Really Good Point Buddy Thanks

2005-06-25T21:24:00.000-06:00

This was such an awesome posting that I’d put it up front as he made wonderful points:

Michelle
I am posting this for the visitor's of this blogg. I also use a ventilator and I'm confined to a power wheelchair. I have been disabled for 20yrs and needed a ventilator since 2000. I find Michelle an important cog in the machine of society. It take's guts and cunning to publish your life in order to educate,advocate and inform people of situation's like her's. For myself society and it's ignorance of people in need. If the majority of the public had any balls they would harass the government to inform them what the hell they pay income tax for instead of blindly writing checks and continuing on in ignorance. Do people have any idea that income tax was to be temporary to help pay for WAR effort's but no moronic tax payers just accepted it's continuation. Now that all these public "government" program's exsist and have claimed responseablity for people like myself and Michelle with TAX doller's tax payer's bitch that people in need are screwing the system. If the general public had any brain's they would refuse to pay their taxes and get the government's attention then the families of mutant's like me could afford to take care us. But because of tax payer stupidity I am FORCED to rely on tax dollar's which pay over $5000 a month to keep me alive I'm now told if I want $100 more I should get a job even though it take's 3 people to get me up out of bed, public transport to get me to work and home. I also require a clinically trained attendant any time I leave my GOVERNMENT funded home therefore costing tax payers a hell of a lot more then $100 a month. So I say to the anonymous retard that told Michelle to stop being a begging victim and to get a job "DUUUHHH"!!! Everybody on this ravaged planet is responseable for their actions and that include's ignorant tax payers and the governments they fund. --Posted by Brad the man responseable for his crippled life and saving the poor gov't money to Mermel's Little Blog Cabin at 6/25/2005 07:23:29 PM

Bright Side

2005-06-23T22:04:00.000-06:00

Some one I know wrote:

It’s obvious this person hasn’t lived with a disability or has recently become disabled and can’t come to terms with it. I also feel sorry for that person leaving a comment and hiding behind an anonymous posting like a coward. I can understand where they are coming from but they fail to realize that most people with a disability can’t work at 100% of their capacity. There are the few who abuse the system but this person has generalized all disabled people as those people. If they had paid attention to all the hard work you’ve put in to trying to help other people with the same issues you face, they wouldn’t have written “you are willing to accept the role of the victim.” Becoming an advocate isn’t exactly acting “the victim.” Keep up the good work,

I said:
The good thing about all this is it gave me a topic to write about. Many people have stereotyped people with disabilities as being lazy. I even know another woman with SMA who believes that her lack of progression is her “mind over matter” . True to point. Obviously that person did not read much of my blog or read the clipping#1 I had talk about my work and volunteering already # 2 I was not asking for money in the news but was called and ASKED TO COMMENT for a (Government) press release (about an increase that not every person on AISH recieved)

2005-06-23T17:04:00.000-06:00

II felt really bummed out yesterday when somebody left some very critical statements about me trying to be a victim. I chickened out and deleted them. Ooopps ! Bad Idea

The truth is I want to make a difference in this world. This is what I want for everyone who uses a ventilator that has the ability. But in order to due these things supports need to be in place. If I was a victim I would be watching soap operas and those talk shows where you punch your Mother-in-law but instead I�m trying o advocate for change.

We need people to be rehabilitated but the irony is that there are no rehab facilities in Edmonton to take someone using a ventilator including the Glenrose. So people are we and too early to get in. So end up dying to get in. I have be disabled all my life so have some idea how to adapt.

I put my story out so that people can relate as I now have life experience to write this down I hate sympathy. PLEASE DO NOT FEEL SORRY FOR ME but some empathy would be fine.

I agree that people on ventilators should contribute but supports need to be in place because everyone is afraid of liability. Why does contribution ALWAYS have to have a $$ value attached??

My Letter From Mrs. Fritz

2005-05-22T14:54:00.000-06:00

Well, I got a responce from Mrs. Fritz. It appears at first glance that they "may in the future" make changes. What the letter doesn't say is that the people on modified AISH were not understanding that even though they submitted AISH FORMS THERE was NOTHING to indicate their comments were being assumed as relating to THOSE ON REGULAR AISH.

Secondly, she failed to say that it will be 2 years before the next review. This means that I'll have to work even harder to nag her as many resident DO NOT HAVE 2 YEARS MORE.

Her letter is also passing the buck to my social worker who already told me were not getting anything.

Her letter makes it sounds like everything is paid for and $175 is pocket money. I just got a bill of $40.?? for trach sponges

#1 I was upser because it will be 2 years before we get any money never mind the $100 everyone living in the community (on AISH) got.

#2 Many here will NOT live FOR ANOTHER 2 years (Many are palliative care)

#3 The little bit of money I got $16 is I'm paying them back was from their mistake

#4 I really wanted to help EVERYONE LIVING IN AN INSTITUTION NOT JUST MYSELF.

#5 Get the bit about the "I was pleased to announce we're giving away money BUT WE CAN'T GIVE ANY TO YOU AND YOUR FRIENDS AT THIS TIME"

I cried for two days. I was sooo disappointed, sad not to mention wounded my prided.

I'll pick up the fight and keep on the battle. I'm not going to let her put me in my place and pass the buck. She can't be as concerned as she pretends to be because she would have done something.

Here is her letter (I blocked out my workers name for privacy:

Dear Ms. Laverdiere:
Thank you for your April 26, 2005 e-mail regarding the Assured Income for the Severely Handicapped (AISH) program. I am pleased to respond.
I regret that you are experiencing such hardship and appreciate receiving your comments. As you know, modified AISH benefits are provided to residents of facilities, nursing homes, auxiliary hospitals, and active treatment hospitals, if the recipient is charged a per diem for accommodation. Modified AISH recipients also receive a Handicap Benefit of $175 per month.
On April 15, 2005 I was pleased to announce the government's response to the MLA AISH Review Committee's recommendations. This review focused on renewing the AISH program and improving the entire package of benefits available to AISH clients.
Following the announcement, I have received feedback from some Albertans who are recipients of a modified AISH benefit. Although an increase to modified AISH was not one of the recommendations identified as part of the AISH Review, it remains an area of concern for me. One recommendation was to continue to review additional supports for persons with disabilities and to ensure the supports and services currently provided by government are better coordinated. Please be assured that this department will continue to look at ways to enhance AISH client services, including modified AISH.
I understand you were able to discuss your concerns with Ms. XXXXXXX, AISH Worker, and that your current monthly recovery amount was reduced from $21 to $5. If you have any additional questions or concerns, I encourage you to contact Ms. XXXXXX at 555-5555
Again, thank you for writing.
Sincerely,

Yvonne Fritz
Minister of Seniors and Community Supports
t

Letter to Minister in charge of AISH

2005-05-16T14:52:00.000-06:00

Dear Your Honourable Yvonne Fritz

My name is Michelle Laverdiere, I am 37 year old woman with a severe physical disability my entire life. I have little choice but to be on AISH since 1986 at the age of 18. I am writing regarding my devastation regarding the lack of increase of AISH Benefits for those of us who a forced to live institutions due to the fact that our physical disabilities are to the extent that we require nursing care.

This is very costly for housing and must be on what the social workers call “Modified AISH” which is ACCOMMODATION BENEFIT (Room and Board which varies according to the institutions rate) and HANDICAP ALLOWANCE $175 (in my case -$21 recovery fee) I have many expenses in which I must pay out of that $155 including cable, phone a necessity for Telecare, tracheotomy sponges, clothing, over the counter meds, snack items ect.

I have been afflicted with a severe neurological disorder called Infantile Spinal Muscular Atrophy Type II . This is a progressive disease which affects the anterior Horne cells causing a wasting of motor muscles. Most children do not live pass the age of 5 years however I am have been raised to make the most of my life to the best of my ability despite bouts of progression and many hospital stays with pneumonia all my life. I required the use of a tracheotomy and 24 hr/per day ventilator since 2003, I even attended University for 3 years (1988-91) and attempted working as a teaching assistant for 4 years (1991 -95).

You can’t understand what a devastating blow it was to me when my illness progressed to the point that I could not get enough homecare (Self-managed care) to remain in my own home safely and was forced into an Assisted Living Centre that houses people who have respiratory needs January 2000. It was a second blow when I realized what a decrease in living expenses I was to take since housing costs so dearly it is assumed that those of us living in long-term care don’t require anything other than the 4 walls, a roof, a bed and food and we should be eternally grateful for the $175 that goes to everything under the sun and have nothing left for entertainment. Even despite this situation I’ve tried to contribute back to society by joining committees, doing what volunteering I could do in my building and advocating for people with disabilities to the best of my ability, and have tried to continue using my mind and learning new things through the internet and library audio books my only escape.

I was overjoyed to her there was an increase of $100 a month for people on AISH. I was even interviewed and was on the cover of the Edmonton Journal. I thought I would no longer have to ask for money from friends or family for clothes, internet fees and entertainment. For safety reasons I require someone at all times but can’t afford an attendant maybe I could have once in awhile with future increase.

Mrs. Fritz, my body is very disabled my mind and drive for life is there. I still have dreams and want to better what life I have left. I want to attend classes and audit classes. I can’t do anything with this tiny $175 Handicap benefit. So I was crushed to learn from my social worker and your office that I’m not really on AISH because of the High Accommodation therefore not entitled to the increase in fact LOSE $5 (Prescriptions).

Mrs. Fritz I’ve have been crying for two days since I realized this. I find this to be another blow as my needs are so high; does that means my life not worth as much. My social worker here at Good Samaritan say that 5% of people on AISH live in long-term care; are you not implying that it is better they remain in unsafe environments in the community than live in long-term care? OR Are you implying that we have no life and don’t need anything.

Please rethink this sad situation because it is very sad that this population is treated so unfairly. We should remain valued members of society despite living in a Long-term care facility. Please reconsider this decision at let us have the $100 per month added to the Handicap Benefit portion of what is currently $175 per month.

Thank-you, for your consideration this matter quickly.

Respectfully,

Michelle Laverdiere

2005-05-16T13:31:00.000-06:00

Edmonton Journal April 16, 2005 Unfortunately, people Long-Term DID NOT RECEIVE ANY MONEY. This is quite a tragedy as we have many expenses as not and only get $175 after Room and board. Things like phone, cable cleaning supplies trach sponges, clothing, Kleenex, personal care items are expensive. Thanks to God I still have family to assist.

2005-05-16T13:14:00.000-06:00

AISH Edmonton Journal

At the ripe old age of 37

2005-05-14T18:27:00.000-06:00

As my Dad found it nessisary to point out that I'm not 37 for another month. Sorry Dad, however I'm not quite old enough for Alzheimers.

At the ripe Old Age of 37

This is what independence means to me:

Together, freedom through access and choice for full-participation
Freedom, to live my life as an individual and to make my own choices.
To accept the risks and responsibilities involved and go where I want (access) to be.
I need to feel comfort and reasonable safety within my own boundaries and to fully-participate in society and in my own life.
(From A Biography Of My Independence….Michelle Laverdiere April 2005)

My name is Michelle Laverdiere I was born in 1968 in Edmonton, Alberta. When I was first born I appeared to be of normal health to my parents however, my aunt, a neo-natal nurse had instinct, which said that something was wrong. This was due to the fact I was slightly “floppy” at birth. I however was able to hold my head up from 3-6 months and seemed to progress averagely according to the infant charts. It cued my parents that something was wrong when I began to have difficulty holding up my head while I was on my stomach and later while I sat in a slightly reclined sitting position. I started backsliding. Doctors were stumped but I was finally after 1 ½ year of testing diagnosed with Infantile Spinal Muscular Atrophy Type II (Then called Werdnig-Hoffman’s Disease) before the age of 2. My life expectancy was from what my family had told me later (as an adult) to be only five years of age.
From what you, the reader can mathematically figure out is that I (at this date, March 2005) have lived to “The Ripe OLD AGE” of 37. How did this happen? The truth is I don’t know?? Doctors wrong??? My guess is that it is a combination of miracles, modern medicine, and perhaps a strict upbringing from my parents. This was not any different from any of m siblings, whom were all able bodied. I was naturally independent and encouraged (sometimes pushed) to be so. My life has been, so far, by no means uneventful. Peaks and valleys (a few narrow escapes) are filling my life, which brings with it, perpetual education and many lessons learned.
I was asked by FSMA to share these life lessons with those parents and children from a new generation, as they are from a different perspective than those of the Doctors and Professional but from someone who was once a child with SMA type II in a world of little information of this a relatively new diagnosis.
About a year after my tracheotomy (March 2003) I wrote a paper which I called “A Biography of my Independence”. {Email me at mlaver@telus.net for a free copy as it is 14 pages, (a bit too long to post) and I will gladly send it to you by email} I focused on this topic as I suffered the loss of my ability to participate within my community due to lack of funding for an attendant and having to move to an assisted living centre. So FSMA http://www.fsma.org/ http://curesma.com/canada/default.shtml have asked me to write a slightly briefer article for parents of children with SMA on how promote independence.
I have had several debates with many people, including those with disabilities on the definition on what independence is. I do not believe you have to physically be able to do things your self but rather a mental state .It to me is the ability to communicate to have your physical needs met, making your own choices in your daily life, and building your own long or short term goals. A good article can be found at: http://www.cailc.ca/CAILC/text/whatisil/intro_e.html . Most of these suggestions apply to children over 2 however my concepts are fairly universal.

Developing Independence In Children with SMA

1. Give your child independence and the freedom to make his her own decisions (even if you think the choice is not one you make) we learn best from making our own mistakes but always be supportive and not leave child stranded. Simple choices can start in toddlers and get more complex as the child grows. It is important for you child to know his\her self really well and to communicate this when necessary. It is easy for someone else to judge needs (E.g. seating) but are not always accurate. Teach your child good communication skills, especially how to communicate their own care needs.

2. It is good to be empathetic (put yourself in his/her shoes) without feeling sorry for you child. A pity party can be very destructive to ones self esteem but acknowledge you child feelings and thoughts and always build up his or her self-esteem. This also means to teach you child to do whatever they can for themselves mentally and physically in a safe manner. Teach the child to safely push his/herself forward without over exertion.

3. Always plan ahead for the future in a proactive way by creating a positive plan with your child for any emergency (hospital stays, attendant no show, ventilation, fire exit), as well as setting long and short-term goals for life). You and your child lean to arm yourself with a good education). Think out of the box for recourse for upcoming problems – students, volunteers, family, friends of friends of friends, agencies, professional’s organizations, and even occasionally government. Think positive long term - it is always possible to have a quality of life even if that means at the worst-case scenario of using a ventilator. .Even if prognosis is grim, it is important to let your child live life with some quality. Often someone with SMA lives longer than a medical prediction so plan very long-term.

4. Keep in mind that your child’s comfort is very important. It is difficult to get good grades and having fun if a child is always in pain. Again ensure his/her corrective braces and his/her seating are not distracting your child from his/her school work or proper sleep. Read as much as you can on pain control should your child need it. Sometimes health issues (such as respiratory ) and Quality of Life are in a delicate balance. www.mdac.ca and http:// and www.fsma.org/ should have articles “pain control”

5. View your child in a (W) holistic manner. A child is a whole person, just as all children are. Even with a disability there is more to your child then his\her physical body, needs to be taken care of, A disability doesn’t make him\her any less a child Any child also has a mind to be educated, a spirit to be nurtured, a heart to be loved and can love back and morals to be taught. Self-esteem and self worth tie into this as well. Some of these areas overlap. And we work at different stages in life, some of these needing sometimes more in one area then the others

6. Use family and friends to help in good times or bad. People drift away when they are not involved and are hard to find when you need them. Building family ties are extremely important especially sibling ones. My searches on personal websites and studies show that many adults with SMA type I or II get isolated and find it extremely difficult to remain active within their own communities. including children who remain living with their parents after the age of 18.

7. Create Interdependent Relationships Our society has a way of viewing people with disabilities as a liability. . Your child is having his/her needs met but everyone gets something back. For example an attendant will be getting wages, or friend might get a emotional reward (feeling like they are needed or appreciated) Make sure these are healthy ones. I made a realization while attending an inclusion seminar with Gary McPherson as a key speaker http://www.garymcpherson.com/I In reality we (People with disabilities) are a major consumers within our economy. Your child is creating jobs and purchasing stock throughout his/ her life- time. Imagine the market crash their would be if all disabilities were cured

8. Always be prepared to advocate for yourself. Professionals often do what is easiest and cheapest. Arm yourself with good and productive educational resources. There are often ways around things and often organizations such as FSMA or MDAC willing to assist. Download The “Self Advocacy Tool” from the MDAC Website. http://muscle.ca/content/?id=37 . Also find others that are in a similar situation as your child, to unite with you to promote change for a better quality of life for children or adults with progressive disabilities. The bigger the group makes the louder. Government tends to give attention to larger groups. So you can include other organizations on homecare for those would otherwise forced into institutions. An example is the “The InSynchrony Project” from is a study conducted by a group of organization representing unique people with progressive disorders located on the MDAC website http://muscle.ca/content/index.php?id=1564

9. Encourage peer support, able body friend and other friend with SMA or MD www.mdac.ca (especially older or more progressed) are good support and can give a unique prospective, assist with support and planning future events or goals. However, able-bodied peers are necessary for social development.

10. Know you child’s Rights and report any abuse. Learn what abuse is how to avoid and report it. http://muscle.ca/content/index (search abuse) or http://www.accd.net/accd_publ.htm (has excellent abuse publications). Often abuse goes unreported and is often from someone the child knows. Teach your child to know all types of abuse. Find out how to report it to appropriate authorities. Also find out how to best help you child. All provinces have different laws. So know your rights and advocate for better ones. Unite with other parents of children with SMA, and adults with SMA for better supports (attendant, technological devices, home ventilation, education, ect). We have a long way to go

Many people with progressive disorders such as I who wish to live as independent lives and not merely have their physical needs met. This, however, needs to be a partnership with the individual, their families, their caregivers and the society in which they live. We want quality to our lives, and not just our medical and physical needs. We also want the government to recognize that we are equal citizens in our country and our province. This however is going to take a great deal of work from all of us especially considering current trends in government spending. I really hope that my in paper is able to help parents of children with SMA plan there future from a different perspective.

2005-03-16T15:48:00.000-07:00

http://elfwood.lysator.liu.se/art.html?9997

First Posting "Together"

2005-03-16T14:57:00.000-07:00

Today is my first attempt at "Blogging" at "Bloggville". I feel I'm in a foreign country and admit I haven't read many yet but thought this might be a good way to get the ball rolling. Last year I wrote a position paper on a topic that is near and dear to my heart.

You see 2 years ago I had to make the very difficult choice of whether or not to do a trachiostomy and use a ventilator. Contrary to what many beleivem I wanted to continue to live despited have been born with a severe neurlogical disability called Spinal Muscular Atrophy and finding out I was getting progressivly worse. Ironicly although the tracheostomy and made me feel a great deal better it had a negative impact on my "Quality of life" due to lack of $$ funding for an aide. I'm a sort of prisoner now limited to 3 blocks or rare outings with friends and family.
So here it is:

Together for Independence - a biography

This is what independence means to me:

Together, freedom through access and choice for full-participation.

Freedom to live my life as an individual and to make my own choices. To accept the risks and responsibilities involved and go where I want (access).

I need to feel comfort and reasonable safety within my own boundaries to fully participate in society and in my own life.

Michelle (February 2004)

During the mid-1970’s and 80’s, there was a trend to mainstream people with physical disabilities into community with able-bodied people. This especially is the case for children and young adults under the age of 60. Children were put into regular classrooms with peers their age and taught to be independent despite severe physical limitations. There was a provincial surplus and funding was easily available for programs to support this. During the mid-1990’s, there was a change in provincial government as well as a large provincial deficit. In turn, many cuts were made to programs and they were seen as a luxury. Often times, some people are not aware of the impact funding cuts have on the lives of disabled individuals. Media coverage on a very small percentage of cases where the system is abused distorts the reality of this situation.

I would like to take this opportunity to use my life story to demonstrate the nature of the problem and the consequences that these funding cuts have on the lives of the disabled population, especially those with progressive disorders.

I was 19 years old when I got my first apartment and attended The University of Alberta, studying education majoring in elementary with a minor in special education. It is a big step for most young adults, and one of the most exciting times in a person's life.

I hired my first employee who was to be my full-time attendant. She graduated with a residential aide certificate from Grant McEwan College. This girl was my first employee, and the key to my ability to live in the community. You see, I can't dress myself, wash myself, fix my hair or toilet myself. I couldn't cook my own meals or do housework and I couldn’t even cut my own food. I have a disease called Spinal Muscular Atrophy (S. M. A.), and received my first power wheelchair for mobility at the age of 11. I was able to do all these things because I had the means to hire a Residential Aide to help me., and yet I still considered myself independent.

Upon leaving university for health reasons, I began volunteering in a small private school that turned into a part-time job for four years as a teaching assistant. I worked in the classroom with a child who had Attention Deficit Disorder, and I later supervised the resource room and tested all elementary students as they completed a grade (they were all on individual programs and working at their own pace). There were times when I worked as a substitute teacher. Once I had to do a complete lesson plan for two weeks for a grade k-2 program after the new teacher quit on his second day. I was very active and enjoyed shopping, reading, going to movies, and loved going to the Edmonton festivals. Occasionally I even went to nightclubs, sometimes tearing up the dance floor with my friends on a Saturday night. I had my own van, so was quite free to come and go anytime I wanted.

“ Why?” you would ask, “How could I consider myself as independent when I could not meet the simplest of my own needs?” My secret is that I don't measure my independence by what I can’ t do. I measure my independence by what I can do. I have a brain, I attended University, learned how to organize myself and was taught to keep payroll. I “knew” how to run a household, to cook, clean, and manage my health. I knew how to shop (as every girl should). I even knew how to drive my van even though I couldn't do the driving myself. I had Residential Aides who could do these things for me. I would teach them how I wanted things done, and they would assist me.

It was very interesting when I had somebody that was not from the city drive me around. I had learned from a friend of mine who was in the same situation how to be a good “backseat driver”. I even got us lost occasionally but that was part of the process of learning to be independent. It was a partnership that would assist me to be independent for 13 years. These Residential Aides worked for me, doing things I wasn't able to do. I was able to live freely in the community and make choices for myself just like any "normal" person would.

In about 1991 or 93 (I can't remember the year), I became a preceptor for students from the Grant McEwan Community College. It was like a Mentoring Program where I would teach students, during their practicum, to complete their Residential Aide Certificate. It was the same program that my first employee had taken and I, in my first years living in my own apartment, had audited occasionally. This enabled me to share my knowledge and experience from the course in exchange for extra help. I didn't realize how important this would later become in my life. I still continue my partnership with this program to this day.

I strove for this independence very early on in my life. As a child, I never saw myself as disabled despite my family’s efforts to protect me and gently tell me I could not do something such as walk. I never gave up. At the age of 2-3, I remember persuading uncles and aunts to hold me up with my feet on the floor and walk me around and around. For a very short time I actually stood for a minute or two despite my primary diagnosis of S.M.A. I thought I could be a ballerina, like most little 3-year old girls wish.

Later on, around the of age eight, I convinced my physical therapist at the Glenrose School Hospital to let me attempt to use the tilt table to stand up, and later try using the parallel bars. It was no big deal to me as I never intended to be some sort of hero. I was just a child, and the equipment looked like fun. The physiotherapy room was always full of exciting new things (in my child eyes) and it looked like a playground to me. Going to physiotherapy was much better than recess (although recess was always fun, too…. I never really got to go to the playground for recess until I was put in regular public school for my sixth grade). My physiotherapist was able to persuade my orthopedic surgeon (bone doctor) to find funding for braces to walk with. Although I have never walked for mobility, it was an excellent exercise. I even had a pair of walking braces designed by NASA, filled with the air by an electrical air pump, which wasn't very practical had if I used them for mobility. I am sure that pump weighed as much as I did. I also had a special desk that I would stand in with a latched gate behind me to keep me from toppling over.

I, however, continued to grow and the funding to replace my braces ran out. I really wasn’t disappointed. Surprisingly, I guess I had already accepted it quite naturally for some reason. As it is still today, there is plenty of funding for children under 18, but as soon as a child reaches the age of adulthood there is no longer any financial support (*note: this is one of the reasons I am currently looking for funding). Nevertheless, my parents were always able to find plenty of resources from the Glenrose for various things needed to enhance my independence prior to this.

After one of several spinal surgeries, while recovering at The Glenrose School Hospital Children's Unit, I met a few boys who lived in a group home. I was still living with my mother and stepfather at that time and found that I was quite confined. I could not get out often as my parent’s house did not have a ramp. My mother had become physically worn out because she was finding it increasingly difficult to lift me. As well, her health was to starting fail.

I really admired these boys from the Catholic Social Services group home as they did everything “regular” teens did. They went to movies and concerts, camping and trips, everything that able-bodied kids do. When things got to difficult for my mom and me (I was the age of 13), I suggested to Mom that I try living in this group home. She was very concerned about dumping me somewhere as she was against ever putting me into an institution. I assured her I could learn to live in my own place with a Residential Aide, just as these boys did. I think it was harder on my mother than my self when I finally left.

This group home did not have an opening for me until I was about 15 1/2 years old. Some of my favorite memories are from this first house for young teenagers. Most of them came from outside the city to attend school in Edmonton. I remember it clearly: it was a large four-bedroom house with a vaulted ceiling, a sizeable patio, and all the amenities of an average home but adapted for people who use wheelchairs. I could drive in and out with ease on my own as there were no ledges or steps, as well as reach the light switches which were a new experience for me, a new freedom I had not had since I received my first electric powered wheelchair at the age of 11. I had such a blast! I finally was able to do everything I wanted to do and more. Of course my mother still remained my legal guardian, but our relationship was less strained and we became close again.

Later I moved into the adult rehab house. This was another house built on ground level, a duplex with low kitchen counters. I lived there with other young adults. This is where I had learned to give direction. For example, I would be given a chore that week, such as dusting or vacuuming. Because I could not do this myself physically, I had to ask someone to help me even at this stage in my life. I was responsible for telling them what supplies I would need and how to do it. I was usually the only female living in the house and I loved to cook. I would plan meals, arrange to get the groceries as well as instruct the staff on how to cook the meal. Sometimes I would even stir while using an electric frying pan. For example, I would make one of my favorite recipes, lazy man's stroganoff. (**Note: I mention this only because after moving to the GSS, initially the staff did not understand why I felt it necessary to give so many directions. They had little idea this is the way I had been taught, as it should be. Many staff had come from places where they were not used to residents giving directions. This is quite the opposite of what we were taught using the medical model.) The boys loved my cooking too! Getting those complements was pleasurable.

From there I moved into my own apartment. I suggested to Catholic Social Services that they establish a program in which a rehab worker would come out regularly to help support former residents living in the community on their own. I noticed while living at the group home that many former residents were having difficulty living in the community without support. Often they ended up in bad situations

While living in my own apartment, I decided on everything from apartment maintenance and cleaning to buying my own groceries. I received money from The Assured Income for the Severely Handicapped program (AISH) for my rent, groceries, clothing, etc. The Alberta homecare program would also deposit a certain amount of money in my account each month and I would hire [and occasionally fire] my own Residential Aides.

I adopted three lovely cats that I loved dearly. Pets love unconditionally and help fill the void that someone who is disabled feels from having no children. I continued living in my own apartment for 13 years. It was during this time that I attended University and later worked part-time in a private school. I was very happy with my life most the time.

There were times when there were issues with a caregiver as there often are in this field. I was able to pay just above minimum wage so many left for better paying jobs in care facilities; however most times were very good. I thoroughly enjoyed my life. Like I said, I had 13 years of living this philosophy, and love those years very much.

Nine of these years I lived in the Artspace housing co-op. The interesting thing about this environment was that it was an integration of disabled people and people who were not disabled. 30% of the units were accessible for someone in a wheelchair. This arrangement was kind of like owning your own apartment. You bought shares and were obligated to serve on the committees or boards that manage the building. The members made all the decisions in the co-op from maintaining the building to interviewing potential residents and staff. The co-op also owned a company that operated any homecare services provided within the facility. I was able enter this co-op very early on during its development stage. The building had not yet been built when my membership was accepted. It was very exciting to able choose the carpet and paint! I got to decorate and wallpaper to my heart's content. I loved building my nest, so to speak.

I believe I learned more living there than I ever did in my 3 years of University. I served eight years on the membership committee and four years on the Board of Directors for the co-op and S.A.I.L. board. I received a lifelong education in building management. I had many mentors and gained many leadership skills. Incidentally, my mentors still live there today.

Then again, in life things change and cannot always remain the same. I was later very thankful that I had made the decision to leave home as my mother died from pancreatic cancer during my first year of University. I was very grateful that I had settled and had some quality time with her before she passed away. Had I been living at home at the time of her death, it would have been very traumatic to me. I would not only have lost my mother, but possibly forced to move into an institution that she struggled so desperately to keep me out of.

There, however, is a certain limit to the amount of money that the government’s homecare program would allow me to have for this purpose and some of that funding had to go towards having care during the night, paying for someone to put me to bed and turning me during the night. In 1999, my health began to fail again so I had to make some very tough decisions. It was no longer safe for me to remain at home for so many hours alone, and it was too costly for the government to fund 24-hour homecare. The co-op was also no longer able to meet my needs. They had difficulty associating high medical needs with independent living.

At first, I attempted to recreate my happy times by setting up a group home. To me, it seemed to make sense to share attendants with other people with similar needs. As well we tried to incorporate the concept of the residents making all the decisions as we did in Artspace. Although the house was very nice, my roommates were not the best choice as their intentions were not always fair. Albeit, the situation had failed. I still, to this day, believe in a group home philosophy, as well as the concept of managing your own environment. In an organization such as The Good Samaritan Society, the arrangement would work extremely well.

It is unfortunate there were no longer many group homes, so I was forced to move into an Independent Living Centre, or what I thought was Independent Living Centre. I was told I can still do all those things I had done in the homecare program except I would no longer have a private caregiver. That seemed hard. Little did I know that I would be losing my independence moving into this Assisted Living Centre.

During the darkest times in my life I have been very lucky. Although I was baptized Catholic, my family did not go to church. I do remember quite clearly spending one year in Sunday school in a Pentecostal church during my second-grade year. My mother came from a Mennonite family and my dad was Catholic so I had a spiritually open mind. Also, my grandmother from my mom’s side greatly influenced my spiritual growth. Although she had lived in Swift Current, Saskatchewan, she helped me develop a strong faith from her letters and visits. I mention this here because I would now have to draw on my faith to help me get through this rough time.

I moved into the Good Samaritan Millwoods Center in January 2000. It was quite a shock. Not only did I have to give up my cats (I was originally told I could keep one… but this changed due to a new rule given by the residents) and my nice home. I had give up the most important thing of all: my independence.

I know ….I know ……“it could have been a lot worse if I had to move into a regular nursing home.” That’s the story Good Samaritan Society and everyone told me when I first moved in; that I “shouldn’t complain.” They were right to a point. If I had to move into a regular nursing home, which I almost did, I would have lost all my power of choice. I would no longer have been able to choose what I eat, how to dress, what time to get up or go to bed and when my guests should leave. I wouldn’t have much say about my medical care or routine. I thought it would not so bad, then boy, was I wrong!!! It was far from what I had always believed Independent Living meant and taught. This was not the same independent living that was always taught by staff at the Glenrose and the group home. I didn't realize that I was about to lose a piece of myself for a long time.

I soon realized this new assisted living centre had very little staffing. The staffing was so sparse I would often have to wait over an hour to go to the washroom after I rang. When I would ask for assistance to use the washroom I was often told that there was no time; they were going to do a bath. I could understand having to wait to have my bed made or my hair combed or my laundry done, but I found it very difficult, and almost torture, to wait to go to the washroom. There was definitely no time for staff to help me do the daily activities I used to do. And I was in shock over how little housekeeping there was.

During my first two years they [The Good Samaritan Society] continued to cut back any other resources from staffing to supplies. Staff had to do laundry for all of the centres. Cleaning and toiletry supplies were also cut back. Although it seems trivial, it impacted staff time immensely.

Things got from bad to worse. We were told that family should help out by doing laundry, cleaning rooms, etc. This was fine for some families as they want to be needed. It was very difficult for me as my family was so used to seeing me independent. They couldn’t understand why all of a sudden I was asking them for help. Somebody in my family thought I was just giving up because I was “spoilt” before when I had an attendant. That person didn’t realize the attendant was essential for my independence. This centre’s staff did not totally replace my attendant. I also didn't want to use up the short valuable visits from my family doing laundry. You see, many of my siblings have full-time jobs and work seven days a week. Some of them have small children, and spouses who can't drive.

Recreation here is a minimum. The Centre has only one recreation staff and a four-person bus. I was able to make small outings on this bus but then had to struggle on my own asking strangers to reach things in stores and get my drinks. I even had to ask strangers to assist me with my medication as I needed help getting it out. I, however, refused to ask strangers to help me with the washroom and resorted to waiting a long period of time using the washroom when I got home.

I had begun to slide into a deep depression as I had lost much of my life. I was told to put my name in for a volunteer. This was a good idea, but I was soon to learn that I would have to wait ten months. I drowned myself in prayer and books. There was a nun who regularly came and always brought me reading material. The library also dropped off books every two weeks. Although this was an escape, it was not an answer to my problem. I unceasingly asked God to help me get through this dark time.

Finally, in October 2000, some of my prayers were answered when a volunteer was found for me. Her name was Kathleen, an RN from the Philippines who was currently working as a nanny. I didn't realize how much personal care I lost. I wasn’t neglected by any means; I would just get very basic care. My hair and nails were unkempt. With Kathleen, I was finally was able to organize my room. This was very important to me. I will give you a good example. Staff was doing all the laundry at that time, so naturally it wasn't always put away carefully. It wasn't because they didn't want to; they just didn't have enough time. In the morning when I would get up I had to wear whatever I could find. Other times I would ask staff to help me get something but they did not have time to help me find what I was looking for. I was lucky if my former stepmother or aunts would help me cleanup. But this would not last too long.

I didn't realize how low my self-esteem had reached until this cheery little Filipino lady started playing with my hair and painting my nails. I started to feel good about myself again. Sometimes we would go out for coffee or shopping. She came every weekend for a whole year, and very rarely missed a day. Although this was not quite the same situation I had in my own apartment, it was a great relief to know that she would be there on the weekends. She later moved on and eventually got a job in the Centre. I still continue getting volunteers to this day, relying on them to help me keep some of my independence. I think they help tremendously, without even knowing, to keep me from slipping into those dark times again.

This, however, is not the be all and end all answer to solve my problems. Volunteers are only able to contribute a few hours per week. They are also obliged to follow very strict policies and are only able to do certain tasks. They can do none of the tasks in the job description of the nurses. Some of the things they are not allowed to do include laundry, assisting in the washroom (which is a necessity for me on outings longer than two hours) and other regular personal care. Volunteers are also very hard to find. More people are working two or three jobs as well as keeping families. There are very few student nurses who wish to volunteer. Occasionally there are programs where students must have volunteer hours as a prerequisite; however, once they have the required number of hours they move on. The things they are able to do for me are very valuable and must not be underestimated.

Again, as I have said before times changed, residents and staff tried to express their concern over staffing cuts. In the fall of 2003, the final cut was made to dispose of an overnight sleeping respiratory therapist position. We called a large meeting that was attended by administrators from the Good Samaritan Society. The tension was high and the outcome very disappointing. Much of the blame was also on the Capital Health Authority as they provided all funding for staffing.

Its too bad prayer can be answered in sad ways. Finally on December 13, 2003, there was an accident in which a man died when he got disconnected from his ventilator while alone. There was a large meeting prior to this where the residents protested the staffing cuts. This accident caused The Edmonton Capital Health Authority “to wake up and smell the coffee” so to speak. The media attention finally got them too. A great deal more staffing for the Clayton Court (respiratory wing), especially for the trach and ventilated residents, was added.

Recently, our overnight Respiratory Therapist was replaced with a full-time wake position. Many nurses were happy they could now provide the care they had always wanted to provide for the residents. Relations between staff and residents finally started to mend. Staff are now able to provide an excellent level of care (in most cases).

Unfortunately, funding was not provided to assist those who have trach or ventilators go out into the community. When the Good Samaritan Society accepted patients with trach and ventilators at the old Abreheirt Centre, residents often went on many outings with staff using their own bus. This, however, changed after the move to the new Millwoods Centre in October 1996 and all the cuts following in its wake.

The extra staff was a relief, not only to others, but especially me. Too many residents (and their families for them) were afraid to go to sleep for fear of choking or not being able to breathe. It was always a fear that one day I too would be in that same situation. I knew I would be on a ventilator one day. I tried to put my fears in the back of my mind but they were a reality that was ever-present since my primary diagnosis at the age of two. I had long outlived the life expectancy of five years that was given to my parents.

In November 2002 I began to experience severe fatigue and muscle weakness. Consequently, I questioned my breathing. I began seeing a doctor specializing in pulmonary disorders. I found out that I had increasing carbon dioxide in my system, causing my disease to progress.

In February 2003 I was admitted to the University of Alberta Hospital. I tried a bi-pap machine but this proved to be impossible because to breathe at night, I was already using oxygen; hence, I was given the choice of using a ventilator. After discussing this at great length with a close friend who was already on a ventilator, I decided it would be best to get the ventilator before I entered total respiratory failure. I know this seems like an extreme measure, but I was more scared of respiratory failure and not being able to breathe in an emergency than I was of having to be incubated, which would have been a lot worse. I knew that my life was worth the trouble as I have always been a survivor and I don't believe in “packing it in”……yet. I’m not sure my family members would have done the same thing. But I wanted to live.

It is at this point that I should mention the importance of the person with the progression disorder should always have a personal directive in place in and only in the case that the individual is not able to speak. I have my father and my best friend , who is like a sister to me listed as my agents. There is much information out there regarding reading a personal directive and one should be cautious and informed when making a decision.

Oh my gosh! It was quite an ordeal. But after a few months of recovery (I did lose quite a bit of motor control in my arms) I started to have all this energy. I haven't had any like that in many years. My mind was clear, although it always was sort of… I just wanted to go out and live my life, but all of a sudden there is a ton of red tape. I could no longer ride the Centre bus without an attendant. At the same time, they are unwilling to provide me with a caregiver to go out with me.

Everybody said “How about a getting volunteer for outings?” That, however, is easier said than done as they are very few volunteers to begin with. Trends in society show that more people are working longer hours with very few days off. The Centre said they were willing to provide training for family, friends, volunteers, or students, yet there is a large reluctance to do this since there have been many law suits to the Centre regarding residents on ventilators. I was so disheartened. The irony is that despite my tracheotomy and ventilator, I had all this energy. And now it is difficult to find people to take me out. It was hard enough losing my independence when I first moved here but I now lost what little I had left.

I find it almost impossible to ride our Disabled Adult Transportation System (DATS) as I get extreme fatigue and pain while riding. I have only been able to use it for very short distances. As a result, I find it necessary to maintain my own van. Family members have been able to fund the insurance on it for now, although I am not sure for how long. I still have great difficulty finding anyone to take me out as family members work long hours and many jobs.

Fortunately, the Grant McEwan Community College occasionally allows students to take the Volunteer/Family Emergency Trach Sectioning and Bagging course. It enables me to go out occasionally, mostly for special occasions such as Christmas or Easter. The student is also very valuable to me for helping me organize my environment and do tasks that I am unable do with staff. This provides me with temporary independence. I have ”a light at the end of the tunnel” in terms of regaining some of my independence I once had.

So what are the answers to these problems? I am currently advocating on behalf of people with trach problems as well as other respiratory conditions. I currently work for a couple of organizations: the A.C.C.D (Alberta for the Committee of Citizens with Disabilities) and the MDAC (Muscular Dystrophy Association of Canada). Within my residence I am president of the Resident Family Committee (RFC) and sit on the Advisory Council of Resident and Family members for the Good Samaritan Society. I still maintain my van so family members or friends can drive me when they are available.

First, I need to address the temporary nature of the problems. There needs to be some sort of resources in order to hire staff who could be trained to handle situations that a person with a ventilator might encounter when on an outing, e.g. suctioning or bagging until an ambulance arrives. This will enable individuals to participate in the community not only for practical things such as banking or shopping but also for leisure and recreation. Some might even be able to volunteer or work if they have this support. This situation should be dealt with first as it is very difficult for someone on a ventilator to be confined for this reason for prolonged periods of time. This is especially necessary for people without family or their family does not have the time to help. The Millwoods Centre currently has four residents who would benefit from this solution. It is certain that in the future, there will be more people who will use a ventilator.

Residents should be empowered by being part of the decision-making process within the Centre where they belong. Anybody who wishes to have some voice in operating the building, hiring staff and policymaking could contribute in some way, either by working directly or appointing a representative. When the Good Samaritan Millwoods opened its doors, it was assumed the residents, staff and management would all take part in all decision-making. This would include the operation of the building, hiring of the staff, policymaking and any other major decisions of the Centre.

After the year 2000, G.S.S. Millwoods went through major management changes. Currently, the management believes that they know what's best for the residents better than they do, and that the residents don't have the education or medical background to make the decisions.

Most organizations, including the United Nations, believe that people with disabilities should be able to participate fully in their day-to-day life and society in general. These decisions should be reinstated in the Millwoods Centre as most people with progressive disorders currently have very little power in their life. They should be able to have as much decision-making power as possible. The Centre is created for the residents, not merely to satisfy the demands of the Capital Health Authority and pressure from the media.

When residents, current staff and management work together in the decision-making process, it creates a more holistic view of the task at hand and all aspects are taken into consideration. This is also in line with the original assisted-living philosophy based on the social model of care on which the Center was founded. Higher medical needs don't necessarily mean that we have to resort back to the old medical model.

There also needs to be more staff on site to assist residents with daily activities such as organizing rooms and recreation activities like crafts and hobbies. A better idea would be for residents to have access to funds to hire their own private attendants if they cannot afford to do so on their own, making them as independent as possible. This would solve both problems. We can longer rely on volunteers to fill this role.

As statistics show, there has been a steady decline in volunteers throughout all of Canada. Many people can no longer afford to give free time as many family members have two or more jobs at a time. There is an assumption that baby boomers now retiring have much time on their hands and wish to volunteer. This is a myth. This might be so within senior centres. Most seniors would prefer to volunteer with people their age or slightly older than themselves.

There is a large gap of volunteers who wish to work with younger people with physical disabilities. Also, people with progressive disorders do not fall within the same category as someone with palliative care issues. It is very difficult to find unpaid labor. As much as I appreciate my volunteers, they are only able to contribute two hours a week at the maximum. It is unusual for them to be able to contribute beyond that. This is not enough for disabled people under the age of the 65.

Secondly, we need to apply this to other people with disabilities residing in the Good Samaritan Centre who have other health concerns that prevent them that from partaking in community life. They also need access to a companion to assist them outside the Centre. People with disabilities often are very capable of putting back into the community but are unable to or are afraid to do so because of health reasons. It also fatigues a person with health concerns when they are forced to struggle in shopping centers or movie theatres without somebody to rely on for help.

There also needs to be more of a focus on rehabilitation and occupational therapy for someone with a disability. Currently, only minimal occupational and physiotherapy are provided to centres. The occupational therapist at the Centre spends most of her time ordering equipment for new residents. There is no time left to spend one-on-one with a resident to develop motor skills.

All too often, people are merely housed, barely meeting the physical needs of a physically disabled person. In Alberta, there is more funding for a person with a developmental disability than someone with a physical disability. This is due to the nature in which funding is provided. Changing the way funding is delivered also means more dollars. Hence it is cheaper to ignore rehabilitation for someone with a long-term illness as well as provide equipment necessary for this person’s state of mind.

There also needs to be more funding devoted to providing assistive devices such as specialty telephones, computers and environmental controls. Again the occupational therapists would be able to spend time with the residents and work with them with these tools. Unlike me, many people do not have the background provided by the Glenrose Rehab facility. Many people going directly from home to the hospital don't have training for independent living. The government doesn't generally spend resources on those considered to have progressive illnesses.

Thirdly, the need for alternative housing for individuals with progressive disorders need to be addressed to enable them to live in the community. If the individual wishes to be independent from their family group homes are a good way of providing care to this type of clientele. Although it is only slightly cheaper than providing care on a one-on-one basis, it keeps the person living in the community. This arrangement enables them to leave their homes for outings, whether for business or pleasure. Staff are able to go with more than one person at a time, and occasionally on a one-on-one. There currently is a group home in Calgary set up in such a manner that individuals with neuromuscular disorders are still able to remain at home even if they require a ventilator.

Funding and adequate and support should be available to those individuals who wish to remain at home with their families. Often , people with progressive disorders , have to leave their home environment , as it becomes a hardship to their families if they should stay. Many people do not want to become a burden in the later stages of their disorder. Support should also be available to thd immediate family , who have two travel long-distances to see their loved ones with progressive illnesses such as the ALS, Muscular Dystrophy or Multiple Sclerosis. This could be in the form of a tax rebate for mileage or other travel expenses , such as lodging.

The Good Samaritan Society and the Capital Health Authority have come a long way in bringing back care that was once provided to people with disabilities, such as myself. With some short-term funding and long-term planning, they will be able to provide a more holistic way of delivering care to people with progressive disorders. They should not only look at the physical needs of the person but also the social, intellectual and emotional needs which includes the individual be able to remain part of a community where they belong.

Many people with progressive disorders such as myself wish to live independent lives and not merely have their physical needs met. This, however, needs to be a partnership with the individual, their families, their caregivers and the society in which they live. We want quality to our lives , and not just our medical and physical needs. We also want the government to recognize that we were(are) equal citizens (in)our country and are(our) province. (T)this however is going to take a great deal of work from all of us especially considering current trends in government spending. I really hope that my story indicates to you the needs of a person with a disability affected by these cuts in programs.

2005-03-16T14:50:00.000-07:00

Taken prior to my ventilator. Around 1997

2005-03-16T14:47:00.000-07:00

today although it's not a good shot.

2005-03-16T14:42:00.000-07:00

3rd Birthday (product of divorce Dad's head chopped off

2005-03-16T14:39:00.000-07:00

Sping is here (me age 7)

2005-03-16T14:38:00.000-07:00

Happy Easter

2005-03-16T14:37:00.000-07:00

Me at 2 years

2005-03-16T14:35:00.000-07:00

me 6 months