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Subject:
From:
Bill Hyatt <[log in to unmask]>
Reply To:
St. John's University Cerebral Palsy List
Date:
Fri, 24 Sep 1999 22:22:04 -0700
Content-Type:
text/plain
Parts/Attachments:
text/plain (143 lines)
Hello Bonnie:
I'm one of the middle age people with CP mentioned
below.  I would be happy to help out by answering any
survey you might come up with.  I'm 45 with moderate
CP and work full time. I've experienced many of the
symtoms listed.  I think the age thing is going to be
a lot harder to deal with than the CP ever was.


--- Bonnie Moulton <[log in to unmask]> wrote:
> 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)
>


=====
Bill Hyatt
"The shortest distance between two points is.....
 usually not accessible"
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