Playing devil's advocate - or maybe just the devil (who, me??) - what
about C P Related Aging Syndrome - I just like the acronym you can get
after a little shuffling.  It describes pretty much my feeling on this
whole aging with CP dealie!!! <weg>  OK, it's obvious I'm just kidding
(yell when you get it, guys...), whatever title is arrived at is ok by
me.

But seriously, this is a great idea, Kyle, I've got a few ideas about
what can be included - within the area of your thoughts in a previous
mail.  As some of you may remember, I had my doc refer me to a Aging
and Disability clinic a few months ago - well I'm still waiting for
the go ahead on that one (#&*$ing public health system), but when that
happens I'll let you know what that results in.  Re. info for the site
- it would be wonderful if we could get a list of other Aging and
Disability clinics or such that are operating elsewhere in the world.

As far as other ideas go, I'll have to get back to you all on that.
Life is pretty stressful at the moment, my scooter is on its last
legs (wheels), a mechanic looked at it a week ago and said the back
axle is so worn down that it could give out at any time and stop
running completely in the next few weeks.  My family are VERY backward
in coming forward with assistance - keep promising help then
conveniently forget all about it - so I have to keep hounding them.
They've never been good about helping before - so my chances are not
good.  I'm applying for gov't funding, waiting for a referral to a
specialist to get a letter to say I need a new scooter, but the whole
proceedure will take months, and I don't have that.  If I'm without
the scooter I can't walk more than 2 blocks and that VERY slowly,
can't carry anything at the same time, so would be reliant on others
for assistance with errands, etc.  I've worked so hard to have my
independence - getting the scooter ten years ago meant that I finally
had energy to get things done, live, rather than just survive.  It is
soooo good just to be able to go about life and have the energy to
THINK and FEEL and just notice my surroundings.  Prior to the scooter
I was exhausted all the time, had no energy to maintain conversations,
friendships, or just to be me.  Because of the exhaustion (and other
reasons) I was severely depressed and suicidal ALL THE TIME.  I do not
want to go back to this, I'm scared of the impact on my emotional
health that not having the scooter will have.  Even now, when the
scooter has to be taken away for a couple of days to be fixed, I wake
screaming from nightmares several times a night, dreaming that I have
to live in hospital because I don't have the scooter.  Also, since
using the scooter a severe, reccurrent knee injury that meant that I often
fell in inappropriate situations (ie. while crossing a v. busy road),
has healed/gone/whatever.  I don't want it to come back.  Also I know
that without the scooter my body would have worn down a lot quicker
over the last 10 years - I want to keep my physical indepence for as
long as possible.

I have a couple of professionals who have known me for many years who
are prepared to advocate on my behalf (thank god!!!  I come from a
family situation that trained me never to ask for what I need -
because if I did ask I never got it), and who are supporting me
through this, but it is still stressful.  This is why I've been quiet
on the list lately, it's winter here, not my best season, and I'm so
strapped for cash I've had to halve my usual dose of magnesium, not
good.  I want to get on to looking for work - I need money, but
obviously it's difficult with this all hanging over me.  I'm doing all
I can to speed up proceedings but the wheels of bureacracy turn VERY
slowly, so I'm playing a panicky waiting game.  I HATE not having
control.  Anyhow, sorry for the ramble everyone (but thanks as always
for letting me get it out of my system - I loves you guys!!), just
wanting to put my 2 cents in.

Rayna


On Mon, Jul 01, 2002 at 11:04:28AM -0400, Cleveland, Kyle E. wrote:
    "CP Aging Syndrome" it is (sound of gavel).  So, is the acronym CAS or CPAS?
    This is fun!

    -Kyle the Curmudgeon