Kyle and all,

The issues you raise apply to many of us who have more "severe" cp. (I don't
like "severe", I'll say "more involved".) Here are specifics:

Employment - I have my M.S. in counseling and worked for 10 years as a
college counselor. I had to stop a year ago because I was getting too
fatigued putting out the energy to make myself understood all day, and I was
having neck pain from computer use (I use an infrared system with my head to
access the mouse and an on-screen keyboard).

I had no idea this was coming. In my 20s I went to school full-time, worked
part-time, was on the leadership team of the grad student Christian
fellowship, and had energy to spare. I was really feeling like a wimp until
I found this group and realized that my experiences are "normal" for adults
with cp. I'm in the process of piecing together work that I can do from
home. I've got 8 months of the year covered now with two admissions related
jobs for the University of California. This is good, now I just need those
other 4 months. When I stopped working at the college, I really didn't know
how I would earn a living.

My overall activity/function level has changed significantly. I need more
attendant help than I used to. I used to sit-ski and spend a week every
summer in the wilderness (carried in on someone's back). I don't anymore -
my body can't handle these things. I've really had to adjust my life and my
thinking about what the rest of my life holds in store. I've also had to
learn how to explain the changes in me to family and friends who also
thought cp was static.

Family issues - I don't have kids, and at this point I won't. But I know
several women in the area with more involved cp who do have kids and are
dealing with these issues. For me, it was a real loss to realize that I
don't have the energy to raise children.

Relationship issues - I know many people with more involved cp who are
married or heading that way (myself included). I am facing the same issues.
Please don't assume that because my cp is more involved, I'm not dealing
with these issues!

I've spent much of my life fighting the notions that I can't have a good
job, can't be an active person, can't be married or raise a family, and I
don't want to have to do that here as well. I agree that the issues we're
talking about apply to a subset of people with cp, but I don't think level
of disability is where the divide falls. Maybe it's more about level of
activity and cognitive ability? I agree with what you said about the website
being appropriate "if you are facing real-world problems because secondary
symptoms (or exacerbation of primary symptoms due to age) are affecting your
quality of life."  I think the website should address the issues, and
readers will self select. I don't know, maybe those of you with an early dx
of "mild" cp were more blindsided by changes in your abilities, but I was
pretty blindsided myself.

My $.02. Thanks for taking the time to read this.
Pam



> First off, I don't want to get hung up on "exclusion" or "inclusion",
> wheelies, walkies or whatever.
>
> The issue I want to address is simply this--
>
> We (and our parents, in most cases) were told out of the gate that CP is
> static.  Sure, the lesions don't change (even this statement may be
> suspect), but as Bobby alluded to in an earlier post, secondary symptoms
> present later on as we age.  While being an information clearinghouse for
> all who are having aging issues, yes, I do want to place emphasis on a
> certain segment: individuals who were dx'd with "mild" cp and are now
> dealing with issues far greater than what they faced early on.  Mags,
Deri,
> Bobby, Kat, Ken, Carla and myself, to name a few, are individuals who are
> facing, or will face, the kinds of issues I would like to address.
>
> Specifically, issues like employer expectations.  For example, when I
> started my job several years ago, I had no problems with fulfilling my job
> duties.  Now, this is not the case at all.
>
> Family issues:  Ken and I have discussed what it's like to be a dad of
young
> kids and adolescents.  There's a lot of guilt associated with not being
able
> to do a lot of the normal "parent" stuff.  Platitudes like, "Your kids
will
> love you no matter what" sound nice and give warm fuzzies, but when you
> can't drive to soccer practice because of fatigue or spasms, these can be
> demasculating for CP dads and just as demoralizing for moms.
>
> Relations with spouses:  Sexual relationships in marriage obviously change
> with age, but "performance" issues have a different dynamic when athetoid
or
> spastic problems are thrown in the mix.
>
> These are issues only a special subset of our CP population face.  I don't
> want to sound exclusionary, but not every CP problem would be best served
by
> this site.  The more general in scope, the less impact for specific
issues.
>
> Bottom line:  Walkie, wheelie, married, single, parent, parent-to-be,
> parrent-wannabee--if you are facing real-world problems because secondary
> symptoms (or exacerbation of primary symptoms due to age) are affecting
your
> quality of life, then this would be your "go-to" webpage.
>
> What I would really like to stay away from are things like insipid
> "inspirational stories", poetry, "voodoo" health care (doesn't necessarily
> exclude all forms of alternative medicine (chiropractic, acupuncture,
etc.),
> but therapies will need to be supported by more than just anecdotal
> evidence).
>
> It WOULD include information on ADA (go, Kat, go!), tips on application
for
> employment disability, jobs information outside of what's provided by voc.
> rehab., info on "parenting with a disability", and most importantly:  a
> venue for educating the medical community that "Post-CP Syndrome" is real
> and must be addressed.
>
> -Kyle
> -----Original Message-----
> From: BG Greer, PhD
> To: [log in to unmask]
> Sent: 6/29/02 11:19 PM
> Subject: Re: New web site idea
>
> Let's don't get into a "walkies" vs. "wheelies" thing here. Just as many
> AB's
> will becomes disabled, many walkies are headed to being wheelies.
> Whether you
> have arhtritic knees from walking or athritic shoulders from wheeling,
> we all
> have stiff joints, pain, spasms, etc
>
> Bobby
>