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.