Pam,

I don't think any of these aging issues have been at all easy to deal with.
Certainly not for me. I was doing OK until five years ago, when I broke my
leg in a fall, and since then the aging process seems to have accelerated
for me.  Or maybe it was there all along and I just didn't notice it or
ignored it.  Well, I can't ignore it  now.

I'm still working, albeit I come home fatigued and aching.  It's not from
the computer so much (I've got a very adaptable ergonomic setup) but from
dealing with the wheelchair and other mobility issues.  It take a lot more
effort for me to get about now, and I don't get out as much as I used to.
Is it easy for me?  Hell no.  Am I cheerful all the time?  Shit no.  I can
be depressed if I let myself sit and think about it, which I try not to let
myself do.  I keep myself busy, with books, computers (I've got three at
home, believe it or not!) and try to get out at least once a week to a movie
or concert with friends.  I'm not married. I'd like to be but considering my
age and the fact that most men don't want to have to take care of a disabled
wife, I'm not likely to be.  I do date, which is fine, and I've got a great
group of friends.   I hurt but I refuse to give in to it.

I think those of us who have been disabled all of our lives can handle this
kind of transition better than an AB who suddenly becomes disabled.  Just my
impression, which could be wrong.

I'm mad at the medical community who can't or won't acknowledge we've got a
real syndrome here that is just as real as Post-Polio Syndrome.  I can't
call it "Post-CP Syndrome," as CP is not an illness we can recover from, but
I'd call it "CP Aging Syndrome."  Just my terminology.  It's really real.

Kat



----- Original Message -----
From: "Pam Dahl" <[log in to unmask]>
Newsgroups: bit.listserv.c-palsy
To: <[log in to unmask]>
Sent: Sunday, June 30, 2002 9:46 PM
Subject: Re: New web site idea--back to my original point


> 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
> >