BOB
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Hi, Folks!
I just got back from the Sept 2&3 22nd annual multidisciplinary spinal
cord injury continuing course on spinal cord injury at the Rehab
Institute of Chicago.
The Facility is excellent. We toured it, (anybody in the area can work
out free in the very well-equipped quad gym) and it is easy to see why
it was voted #1 hospital by U.S. News and World Report.
Ron Cohen of Accorda (company Wise Young works with) spoke, and what an
outstanding speaker he is! Clarifies medical issues of research
extremely well (Kim I asked him for a letter on the reasons why Richter
should he supported and he promisd he would-- I willfollow up on that,
and send it to you, or do you have one from him already?). He was really
excited about L-1 which he describes as traintracks for the regenerating
nerve to grow across. Also spoke about M-1, which works (I think) to
remyelinate the nerve, and of course 4AP.
Intended for doctors and PTs, the conference was great to attend for me
not only because I made some good friends but also it was good to hear
doctors getting seriously angry about the shortcomings of the
hmo-dominated medical scene.
I heard from a doctor who attended the NSCIA conference that the Sygen
national trials were even better than expected. I predict Sygen will
eventually be routinely given with the methylprednisolone immediately
after injury. Those in the study received two injections a day for sixty
days. I have not read the reports yet, but the original study reported
a gain of roughly on ASIA level per person-- but it has to be
administered in the acute stage, as far as I know.
Pain-- the sleep/waking cycle was said to be surprisingly important for
those suffering the horrendous sci pains-- apparently a regular sleeping
pattern matters more than realized for pain sufferers. The big pain
medication the speaker (Dr. R. Norman Harden, Director , Center for
Pain Studies, RIC) talked most positively was Gabapentin. Someone (this
was a doctor's panel) asked about Effexor, and the doctor making the
presentation said they were calling that "side-effectsor" because it
makes people spacey and groggy. They also talked about a long-lasting
local anesthetic called something like "Bambucane"-- apparently it comes
in a cream and you rub it on and it helps with some kinds of pain for
several weeks. But it also gives a hot sensation of its own.Accupuncture
said to be very effective if done by experienced practitioner.
Viagra was said to be 80% effective for sci people.
My favorite person was a secretary who works at a sip and puff station,
she had double pneumonia, (polio survivor) and could only move her face,
but there she was, working away-- kind of made my own petty problems not
worth mentioning.
Average stay in hospital and rehab down to about 2 months total now, and
people divided in opinions-- most felt that was just not enough time,
some (like me) felt that was criminal neglect.
Big thing was tele-consultations-- a tv setup where you and the doctor
or therapist interface over tv or computer, and a camera points at your
skinsore or whatver and the person in the hospital gives you advice.
Better than nothing!
Importance of athletics stressed-- big difference in health from those
who compete in some sort of wheelchair sports and those who do not.
Met Mark Parente, who is working with the Jim Mullen Foundation to
provide free computers to shut-in quads. He is two years post-injury ,
c-6, very nice, wife and a very rambunctious two year old boy who ran
all over the place, until poor mom had to take him out during the
presentation.
Kim, Mark very interested in Richter Bill (I talked about it in front of
the whole group and individuallly with breakaway groups) and I have
already e-mailed him once, and will keep in touch-- he has a great
site www.sciconnection.co
I asked so many questions the director, Dr. Don Olson, told me, "Don,
you are a pest, do you know that?" Well, yes.
Heard about a new book, "Don't Do It Without Me," by James Charlton,
about a quadriplegics statement on the importance of not letting the
medical professionals run our lives while we passively submit.
All in all well worth the $300 admission and two day trip to Chicago
(beautiful weather, marred only by the armed robbery in the airport
while I was there-- a guy pointed a gun at the armored car attendant,
said give me the money, guy said no, bang, shot him in the leg. Guy
still said no, got shot in the other leg. Then got the money.
Perosnally, I would have given him the money!)
Best to all,
Don and Roman
P.S. If anybody wants to post this to a friend or other newsgroup, feel
free.