THIS IS ADDRESSED TO SOMEONE ON ANOTHER LIST, BUT I THOUGHT PEOPLE ON
CPPARENT MAY BE INTERESTED.

Dear Kat,
I won't know what version of  Hart Walker   I am getting till I meet with
the people at Orthoproactive on April 2nd. I am hoping to beging with the
four-whelled version. ON THE TWO-WHEELED VERSION, THE WHEELS ARTE ON ONE
SIDE OF YOUR BODY (either right or left), front and back. This means the
device could, hypothetically tip, but is fine for those who have practiced
w/ the four wheeled device/ outgrown it.
I have sort of asked them to make a new gait trainer for me--- one I CAN USE
THE HART BRACING WITH, BUT THAT ONLY HAS THREE SUDES SO I MIGHT GET IN/OUT
INDEPENDENTLY. The attachments to release the brace from the frame are
normally at the back, but I have asked that they be in a place accessible to
me. I have also asked for some time of braking system I could operate on my
own. In essence, I have asked them to develop a new device.let me be the
guinea pig. I have already sent them a video, but will let you know what
they think when they see me.
Since Orthoproactive also manufactures orthotics, I am also asking they
recast my AFOs, and have an appt. for that. Am writing my "thesis" for my
appointment with the pain clinic-- just really, really, long.... and am
planning to bring the protocols for Intrathecal Baclofen and dystonia (as
well as the letter saying I have it), to my physiatrist next Thursday. Am
upset because Oxycocet did not work for me at all-- like eating a sugar
cube. The only thing that helps is the clonazepam, that ironically treats
dystonia-- go figure. I am looking forward to the walker, though it may take
months to produce, the SWASH BRACE, and seeing what the pain clinic has to
say, though I SWEAR MOST OF MY PAIN IS STILL FROM SPASMS OR THE MORPHINE
WOULD HELP.
I am going to ask that all tests be done again-- CTs, MRIs, etc, maybe that
I SEE A NEW NEUROLOGIST, AND OF COURSE, WHAT OTHER IDEAS THEY HAVE FOR PAIN
MANAGEMENT.... One thing that is true is that I CANNOT TAKE THE PILLS. CAN'T
REMEMBER MY NAME OR HOW OLD I AM.
I think they will have a book before I am done-- my pain history with
meds/surgeries listed is 3 pages single spaced, then the medication diary is
already 8 whole pages in 7 days. Am writing what worked, what did not, meds,
symptoms. I WAS SHOCKED MYSELF TO REALIZE WHEN TYPING THAT I HAVE BEEN IN
PAIN ELEVEN YEARS. I AM 24 NOW. VERY SCAREY. Anyhow, please say some prayers
for me. I AM STILL HOPING FOR THE PUMP OPTION. Don't care at this point what
anyone puts in it. Just cannot seem to handle side effects of oral meds at
all.
I am in so much pain now I could cry... can't do schoolwork, can't sleep...
Ugh.
Jenn
EVEN NICER, THE PEOPLE ARE DONATING THEIR TIME TO HELP ME, IN THE HOPES
PROBABLY THAT THEY WILL HELP OTHERS SOME DAY. I TOLD THEM I WAS A STUDENT ON
PENSION AND HAD NO MONEY. They don't even pay enough pension money to cover
residence fees,