kyle, judy may be different than laura. but, i don't
sense too much of what you described. and bj at 16
seems to know and understand. i am sure that there are
bouts of resentment, but, i do not sense them as
ongoing.
  i have 54 years of walking with minor interuptions.
judy and i are planning on building a retirement home
that assumes that i, if not both of us will eventually
be in a chair. we have looked at how far i have went
down in the mid 40's early 50's and accept the fact
that it will finally come. so we are talking about the
things we want to put in our home.

--- "Cleveland, Kyle E." <[log in to unmask]>
wrote:
> 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
> http://www.lookingglass.org/ , 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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