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)