I'm living in Australia but, hoping to go to the US & Canada for 5mths next
year.
I was hoping you guys had a dr who specialised in CP adults because there's
no one in Australia!
But, I sometimes have a habit on blaming all medical problems on CP when
I really have additional problems not related to CP.
Fiona
----------
> From: Bonnie Moulton <[log in to unmask]>
> To: [log in to unmask]
> Subject: Re: what is a specialist that has knowledge of cp on the
agingca...
> Date: Saturday, 25 September 1999 12:49
>
> Hi Ken,
>
> My name is Bonnie, have belonged to this list in an "on again, off again"
> fashion (depending on the status of my computer) for about two years. I
am
> 40+ with CP, an occupational therapist and a full-time doctoral student
at
> Temple University in Philadelphia - where I just happen to be doing
reseach
> on aging and CP. I had questions and no one had satisfactory answers -
what
> can I say?
>
> Having said all of that. . . I wish I had more hard info for you . (Like
a
> name or a treatment facility.) I don't. Sorry. But, I do second the
advice
> that you have already gotten to see a physiatrist or a neuro with
experience
> treating CP adults. That adult piece is very important . Don't make the
> mistake of going to see someone who treats CP kids thinkinking that he or
she
> will be able to make the mental transition to thinking about adults.
Some
> may be able to do so. . . but I've wasted good money on others.
>
> Make some phone calls yourself. Most docs will give you 10-15 minutes on
the
> phone and if they don't, that's an indication that you don't want them
> messing with you anyway. BUT, have your questions ready ahead of time.
>
> Some suggested questions are:
> 1. How many adults with CP have you treated?
> 2. Are there specific things I can expect to happen with my CP as I get
> older?
> 3. I have been experiencing. . . . (fill in the blanks)... is this
common
> in folks with CP? Is it due to CP or aging or both?
> (some common experiences are decreased endurance - energy level
> accompanied by longer time needed to recover from physical exertion
> decreased balance, increased frequency of falls, increasing muscle tone,
> increased frequency and severity of muscle spasms, decreased strength,
joint
> pain at one or more sites, neck or back pain.)
>
> This should not be new to you. I've seen all of this show up on the list
> over the last year or so.
>
> Make lots of calls. Don't stop with the first person that sounds good to
you.
> Shop around - because your HMO probaly won't.
> Start with the major medical centers in your area. It's good that they
are
> willing to let you travel some for an eval, but for follow-up or routine
care
> closer to home is good.
>
> Also contact your local University Affiliated Program. These were set uo
in
> the seventies to do resaerch and to provide community based services to
folks
> with developmental disabilities of which CP is one. Every state has at
least
> one UAP I don't want to get on the web to look for it now, but I will
send
> you contact info for the one in GA sometime this weekend.
>
> There is also a website on aging and CP maintained by June Issacsson
Kailes.
> It's a good site with accurate and reliable info. Her contact
information is
> posted there. I should call her myself soon. Will post that site to the
> list tommorow.
>
> Wish I had more specifics to tell you all, Oh, Ken, last I heard, Kyle
> Cleveland had a good doc in Ohio. Ask him to post his name and address
to
> the list. Or I guess I could ask him myself. What do you say, Kyle? Do
it
> for those of us that are experiencing a few too many "over 40 moments"
and
> need the scoop on wether we are "just" stressed out or if our brains are
> indeed turning to mush. . . .
>
> Anyone who would like - and who mets the criteria- of basically being old
> with CP and able to complete a survey can let me know. Except for Bobby
> Greer who I may need to help me figure out some issues of study design --
if
> he's willing.
>
> Please bear in mind - I am not ready to start the research yet - and when
I
> am I will make every effort to be respectful of individuals and of this
list.
> At the moment I am struggling to get a propopsal on paper, through
committee
> and approved and get ready for Major Area Exams. Ask Bobby what all of
thgat
> is if you really want to know. I haven't the heart to go into detail
>
> Look for some links in a day or so.
>
> Good Luck
>
> Bonnie and Claude (the service-poodle)
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