Hey!
Now, I'm not putting you down for bitcin' - been there done that.
But I can say that a crappy chair sucks and a well-fitted one makes all the difference in the world. :-)
Kat
-------Original Message-------
From: "Cleveland, Kyle E." <[log in to unmask]>
Sent: 05/12/03 10:21 AM
To: [log in to unmask]
Subject: Re: Downhill ride (long response)
>
> Hey guys.
Well, I broke down this morning and borrowed a (crappy) wheelchair from
the
building folks because I'm so buggered up from the weekend's drive that I
figured it was better than taking a chance on stumbling and falling on the
marble.
For those of you who have been in a chair for a while--or since
birth--please don't be offended by my reaction, but this sucks. For years
and years my plea has been to the docs, "do what you need to, but keep me
out of a chair." That may sound arrogant and prideful, but it has been a
fear--no, terror--of mine for years: that I would have to use a chair
while
I was still relatively young. I know, I know, you're thinking, "Shit,
I've
been in a chair for years and this guy is whining about having to use one
now when he's in his 40's?! I wish I had 40-some years of walking under my
belt!" You're absolutely right, but this has happened so quickly that
there's a feeling a being cheated--not only in my own mind, but my wife
and
kids' minds too.
You hear it in the little sighs when you tell your wife, "I'm sorry, but I
can't do laundry right now. I'm spazzing something awful." You know
she's
thinking, "Great! He expects me to do all this myself? I feel like I'm
gonna neeed PROCRIT just to get through the day and he wants me to pull
his
load too." The kids don't even ask me to play with them anymore. They
know
I'm going to be:
A) Too tired
B) Hurt too bad
C) Afraid to fall
Take your pick. They've heard them all day after day. These are active
kids. They don't want to read books or color or play board games. They
want soccer and baseball and bike riding and kite flying.
I just wish I'd known the what I know now, know what I mean?
Sorry for boo-hooing. It's better than throwing a chair through the
window.
LOL
Kyle
-----Original Message-----
From: pam [mailto:[log in to unmask]]
Sent: Sunday, May 11, 2003 11:26 PM
To: [log in to unmask]
Subject: Re: Downhill ride (long response)
Hi Kyle,
Sorry to hear you're having such a rough go these days.
I also have pain and spasticity in and around my S/I joints. I sometimes
get
the intense spasms you speak of in my left hip and S/I joint. It takes so
much energy to deal with that kind of pain. Feldenkrais has been helpful
in
my S/I area - Feldy practitioners receive lots of training in working with
the pelvis. In addition to the benefits I've gained from hands on work, my
practitioner has given me some good strategies for reliving pain in that
area on my own and with minimal help. BTW, one of the big HMOs out here
(Kaiser) is providing Feldenkrais and acupuncture to its patients.
I also wonder if Botox would help. It has decreased the pain in my hip
from
8-10+ to 1-4 during a typical day (on a scale of 1-10). It hasn't
addressed
the underlying causes of my hip pain (subluxation and arthritis), but it
has
broken the pain, spasticity, Pain, Spasticity, PAIN, SPASTICITY cycle.
--
I have a question about spinal stenosis. I recently had a MRI to see if it
is the cause of my increasing spasticity (it's not), and was told that
surgery would be an option. What about surgery in your case?
--
I have the Baclofen pump, and though I have had a mixed experience because
of my unusual side effects (the Ben-Gay thing), when the dose was high
enough it did a remarkable job of toning down my spasticity. Have you done
the test dose? In two weeks we're going to add Clonidine (a pain med with
some muscle relaxant type side effects) to my pump. I'll let you know how
it
goes. I know one person who uses the pump with Morphine and has good
results.
--
As regards the ADA; my former workplace provided adaptive computer
equipment (($7K) and on-going clerical support without an overt blink of
an
eye. I had to wait for the slow wheels of bureaucracy to turn, but
otherwise
it was pretty painless. I think much depends on the employer/supervisors,
and what you're asking for. Question: if you are going to need to retire
early, would it be bureaucratically beneficial to have exhausted your ADA
options?
--
I don't have kids, but I do have household responsibilities and a niece,
nephew, and god-daughter that I'm close to. I know it's vastly different
when the kids are your own, but here are some thoughts:
I take care of my household responsibilities (dishes, food prep, cleaning,
etc.) through my attendants. Would it be possible for you and Laura to
hire
some help? (And, if it would be more helpful to Laura, for you to manage
said help?)
As I've thought about your situation, I've wondered if a scooter or power
chair would be useful at this point. I take the kids in my life for long
walks - they all love riding on my lap. We roam, explore, and talk. The
oldest (7) is having a great time learning to drive my chair while sitting
on my lap. I can't play catch with them, but they can try to kick a soccer
ball past me. I can be outside with them interacting, encouraging,
supervising, etc..
(Powered mobility might also allow you to do some of the activities you're
missing.)
You might also check out Through the Looking Glass
<a target=_blank
href="http://www.lookingglass.org/">http://www.lookingglass.org/</a> , an organization which provides support to
parents with disabilities.
--
My heart goes out to you, Kyle. I wish you grace and relief.
>
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