Hi...
You asked a good question. When Ilost the use of my legs, my upper body was too weak to transfer, in spite of three long stays in rehab. I needed help to do almost everything. I was on disability and Medicaid and could not afford to work and lose my benefits. I really hate that I am dependent on the government and that I am poor and trapped. but I would love to bite the hand that feeds me.
Annie
--- On Tue, 7/22/08, Tamar Raine <[log in to unmask]> wrote:
> From: Tamar Raine <[log in to unmask]>
> Subject: Re: Fwd: [C-PALSY] Hi...I'm Annie
> To: [log in to unmask]
> Date: Tuesday, July 22, 2008, 1:13 PM
> Annie,
> i am not understanding why you had to retire just because
> your legs aren't working anymore?
>
>
> mag
>
> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
> http://www.zazzle.com/TamarMag*
> Tamar Mag Raine
> [log in to unmask]
> www.cafepress.com/tamarmag
> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
>
>
>
> ----- Original Message ----
> From: Kendall D. Corbett <[log in to unmask]>
> To: [log in to unmask]
> Sent: Monday, July 21, 2008 11:00:13 AM
> Subject: Fwd: [C-PALSY] Hi...I'm Annie
>
> This didn't go to the list when I hit reply, so here it
> is:
>
> ---------- Forwarded message ----------
> From: Kendall D. Corbett <[log in to unmask]>
> Date: Mon, Jul 21, 2008 at 11:58 AM
> Subject: Re: [C-PALSY] Hi...I'm Annie
> To: [log in to unmask]
>
>
> Annie,
>
> Welcome to the list! I'm another aging CP'er, as
> is my wife, although we're
> in our late 40's. We're already dealing with aging
> issues, so have started
> doing research on it. We both work for a University Center
> of Excellence on
> Disabilities (UCED - pronuonced "You SaId") in
> Wyoming - The Wyoming
> INstitute for Disabilities (WIND)
>
> www.wind.uwyo.edu
>
> There is a UCED in Arkansas that may have info for you, as
> well, that has a
> specific project on elders with developmental disabilities:
>
> Website: http://www.uams.edu/partners
>
> and contact info for the elders with disabilities
> coordinator:
>
> Elders with developmental disabilities Brenda Reynolds,
> BA<http://aucd.org/directory/detailbio.cfm?program=UCEDD&staffid=3106>
> 501-922-1880 [log in to unmask]
>
> Many of the UCEDD's use the developmental disabilities
> terminology, because
> of the way the funding is derived, but if that raises red
> flags, don't
> worry. Particularly in rural states (Arkansas and Wyoming)
> we go well
> beyond the developmental disabilities field. Under the
> federal definition,
> many people with CP (even without cognitive disabilities)
> are thought of as
> developmentally disabled.
>
> The National Institute on Disability and Rehabilitation
> Research (NIDRR)
> provides funding for Rehbilitation Engineering Research
> Centers (RERC's). I
> think there is a RERC on CP, but it focuses on pediatric
> issues. We should
> all write our senators and congress members and NIDRR and
> encourage funding
> for a RERC on adult and aging with disability issues,
> particularly CP.
> Here's general info on RERC's:
>
> http://www.ed.gov/legislation/FedRegister/proprule/2003-1/011003c.html
>
> And a listing of RERC's that have been funded although
> I'm not sure if the
> database is current:
>
> http://www.abledata.com/abledata.cfm?pageid=113573&top=31670&ksectionid=19326
>
> Since these are largely engineering projects, they may not
> hit every one of
> our needs. Wayne State University in Detroit does a fair
> amount of aging
> with disabilities research also through their Physical
> medicine department,
> so it might be a good place to start:
>
> http://www.iog.wayne.edu/disability.php
>
> On Sat, Jul 19, 2008 at 9:57 PM, Annette Koonce
> <[log in to unmask]>
> wrote:
>
> > Hi.....my name is Annie. I'm 62 year old woman in
> Arkansas who was born in
> > Cape Town South Africa. My parents brought me to the
> States when I was three
> > for treatment of my CP. I am a psychotherapist who was
> forced to retire in
> > 1996 because I totally lost the use of my legs. I am
> now completely
> > dependent on my daughter. (The state pays her to care
> for me). I am hoping
> > to hear from other adults because so little is known
> about those of us who
> > have CP in later life.
> >
> > I read the 1993 article from the state of New York
> which was cited in a
> > previous email. I must say I wasn't impressed by
> it.... surely there is some
> > other information somewhere which is more current! Can
> anyone out there
> > help?
> >
> > Thanks so much. I can't wait to get to know
> y'all on the list.
> >
> >
> >
> >
> >
> > -----------------------
> >
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> list, go here:
> >
> >
> http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
> >
>
>
>
> --
>
>
> Kendall
>
> An unreasonable man (but my wife says that's
> redundant!)
>
> The reasonable man adapts himself to the world; the
> unreasonable one
> persists in trying to adapt the world to himself.
> Therefore, all progress
> depends on the unreasonable man.
>
> -George Bernard Shaw 1856-1950
>
>
>
> --
>
>
> Kendall
>
> An unreasonable man (but my wife says that's
> redundant!)
>
> The reasonable man adapts himself to the world; the
> unreasonable one
> persists in trying to adapt the world to himself.
> Therefore, all progress
> depends on the unreasonable man.
>
> -George Bernard Shaw 1856-1950
>
> -----------------------
>
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>
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>
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