We all love Betty. She's definitely one of us., and her view of the
world (as someone who has been steadily moving from abled to the
"dis" world), has opened my eyes on more than one occasion.

Cheers

Deri

On Saturday 06 Apr 2002 11:46 am, Betty B wrote:
> Emma, I don't doubt that you're confused with all those silly
> references.  I acquired cp through theft and coercion, which is
> about the only way one can get a cp diagnosis after about 18 months
> of post natal life (unless the information I've read here or there
> is incorrect).
>
> The truth: I was diagnosed with idiopathic peripheral neuropathy
> several years ago, after a rapid decline in physical strength,
> balance, and stamina. There is also pain, and a good amount of it
> too.  My legs and arms are affected, so I can't stand long without
> pain that seems to take more of me with each passing year, and my
> arms are a great deal weaker than they used to be.  I used to be a
> crutch/wheelchair user, now I'm a wheelchair/crutch person by order
> of preference.  I float between touch typing and dragon dictate
> now, depending on how my hands are doing.  I still play my guitar,
> but not so you'd notice ;-)  There is a bit more emotional pain in
> that loss than I can describe.
>
> The first problems I noticed were a loss in grip strength, a
> tendency to veer off when walking instead of staying in a straight
> path, and incredible fatigue.  I drop things a lot -- car keys,
> things like that. I don't even know how to describe how bad the
> fatigue is at times.  That, above all the other symptoms, has taken
> me out of too many of the important games of life, like alligator
> wrestling, and working a nine to five.  I've tried a number of
> volunteer opportunities but it always ends up the same way, and
> they end up being discouraging experiences.  A trip to the grocery
> store -- even just for a few things -- takes everything out of me.
> My concentration is shot much of the time as a result of all this.
> There's just too much pain and fatigue to cope with and it takes
> too much of me.
>
> This is a condition for which my doctors have never been able to
> determine a cause, which is the case in about a third of the people
> with this (again, unless I've been misinformed by things that I've
> read).  Thus, this is labeled "idiopathic," a word I have come to
> hate, and could make a career of in therapy if I so chose.  Most of
> the time, you'll hear about peripheral neuropathy being secondary
> to diabetes, and their symptoms are quite similar to mine, although
> it doesn't seem to be as bad for them or as pervasive as it has
> been in my case.  Other causes can be alcoholism, drugs used to
> treat people who have AIDS, and some others I've forgotten about.
> Sometimes, pn remises too, but if that would have been the case for
> me, it would have happened a long time ago.  I just keep getting
> worse, but now it seems to be the secondary issues that are taking
> me down.
>
> Neuropathy is basically a blanket term for any kind of damage to
> the peripheral nervous system, so this doesn't involve my brain or
> spinal cord. Carpal Tunnel Syndrome is a form of neuropathy too.
> As I said, it's a blanket term.
>
> I don't usually refer to pn directly, and that's my little bugaboo.
>  It's secondary to something, and it's frustrating and pointless
> for someone to remind me of it.  I guess I also got tired of
> explaining what pn is (not in this case, I don't mean that I don't
> want to explain it to you -- this is different).  Here, I tend not
> to refer to it directly since this list is really for folks who
> have cp and people who are associated with folks who have cp.
>
> I came to this list at the behest of Trisha, whom I met on another
> list.  Her daughter Amber has cp, and she asked about me pitching
> in with the administrative duties of this list.  I was very happy
> to do so, but am not part of the administration now.
>
> I'm here now, because I'm part of this gang now and I love these
> people.  If I were to win the lottery, there are people right on
> this list I'd share with before my own relatives.  That's a fact
> but not a probability, since I don't play the lottery.  The
> honorary cp comments are from people kind enough to let me feel
> like one of the gang.  The honorary cp diagnosis has meant a great
> deal to me because I know the intent that lies underneath.
>
> The secondary joint problems that cpers here talk about?  Those are
> my problems too, and they have become big as of late.  Those are
> about the only symptoms we have in common, but the friendships I've
> developed here have nothing to do with anything but hitting it off
> with various people I'm now close with, in the same way that common
> elements cause friendships to develop generally.
>
> That's about the long and short of it.  I just now feel more at
> home here than anywhere else.
>
> I hope this clears up the confusion Emma.  I don't wonder that you
> couldn't figure out what in the heck was going on with me.
>
> Betty
>
> In a message dated 4/6/2002 3:10:54 AM Eastern Standard Time,
>
> [log in to unmask] writes:
> > Hi Betty, how're you going?
> > I've been meaning to ask you this for a while, I hope you don't
> > mind.... Did
> > you "acquire" CP??  It's just that I always thought it was
> > something we were
> > born with.  And yet you talk about "since becoming disabled".
> > And then a few
> > weeks ago somebody referred to you as "honorary CP", and now I'm
> > just plain confused. :(  Is CP something  you can acquire due to
> > accident or injury?
> >
> >
> > Hope you're well.
> > emma