Hi Everyone,

I have just walked back into my residence room after getting back from my
weekend in Toronto.... I still don't have a power chair that works according
to a voicemail message. Here is the story in short form:
1. The pain clinic thinks the only way to solve my pain problems is with
opioids (morphine, etc.), and trigger point injections. The doc there,
though I found him lukewarm and not really human till the end of the meeting
has agreed to do both over the summer. (I cannot find a physician in my
hometown who will give me morphine, and Dr. Delaney will do trigger point
injections, but thats it... She, for people who don't know, told me to seek
out a psychiatrist's help. THE DOCTOR AT THE PAIN CLINIC TOLD ME NOT TO DO
THIS. He also noticed my dystonic movements (mostly in my feet, throughout
the whole appt). He wants me to seek out the opinion of the Movement
Disorders team because he is of the opinion that my pain has a lot to do
with my disability. I am going to ask my physiatrist here in Ottawa for a
referral to a neurosurgeon at the Montreal Neurological Institute who I know
inserts pumps. (He was one to say no to my rhizotomy). Even the physiatrist
here  in Ottawa wants to experiment w/ antispasmodics/other pain meds given
intrathecally. I am not happy at all with the side effects of oral
medication.

The doctor thinks my trigger point injections NEED TO be done at least once
a week, perhaps more at first.
I did not think the doctor was great, but at least he can technically do
what I need done in the short term.

I need a whole new type of leg braces according to the people at
Orthoproactive. Ones with a soft inner shell that go all around my foot
(shaped a bit like a high top tennis shoe), and then a rear entry brace that
is hinged to give a slight degree of plantar flexion-- complete opposite of
what I have now as my dorsi-flexion is free.     They also recommended the
SWASH brace for me, so I am glad I will soon be the first adult in North
America to try it. Am waiting to have the peices sent from Spain, and then I
will be a bit of a guinea pig for them. (They will get opinions from me,
improve it as I see fit, etc.) Can't wait. I also love that my new AFOs get
to be mauve with different coloured butterflies-- I love purple and
butterflies to mer symbolize something that can transform, is free, etc. My
uncle thought it a bit childish for a 24 year old, but I love purple and it
has symbolic meaning for me, too...

REGARDING THE HART WALKER: I had a long talk with the people who make it.
The only reason they said no to me after seeing my video was that they
realized from my e-mails, etc. that I NEED a suspension system in any
walking trainer I try, and they cannot offer thast to adults yet... There is
an individual working on a patent for one, and he wanted my input, so I gave
it-- easier way to get out, although I realize I would need help to get
in/out of the brace component, perhaps a u-shaped design so there is nothing
impeding this, some sort of braking system so you could slow yourself
down/lock yourself in place if working at the kitchen counter with knives
and needed to be still, big wheels, and a way that the device can carry
adult weight without being too wide. I have said I will help in any way I
can in terms of design.
I hope that by the end of the summer with the SWASH BRACE and new AFOs, I
will be better able to walk. I am not thrilled with the options presented by
the pain management physician, and still want to pursue pump delivery for
this, but at least he was the first doctor to see my dystonic movements in
his office (Other than the neurologist in London who diagnosed me in a
letter). They happen mostly at night, as even my aunt noticed as she kissed
me good night each night.
I think, all in all, my trip to Toronto went really well, and am glad I went
with no expectations. I have a phone appt. with my physiatrist in Ottawa and
will ask him to send me to the surgeon in Montreal who does pump placements,
and write down specifically on the referral the drugs he wants experimented
with for pain and spasms. ... The surgeon in Toronto also implants
stimulators for pain, but at this point, I have no idea what would be
better, especially if my pain is coming from a few different sources, as I
think it is....
So I will be spending my summer in Toronto, and asking my GP here in Ottawa
for extensions on school work. MY BRAIN DOES NOT WORK WELL ON MORPHINE...And
if I STRESS MYSELF, I will just cause more pain. It is not worth it, and
yet, school is something I HOLD ONTO. I had a wonderful Easter with my
family, and hope everyone else did  as well. I don't think my news from
Toronto could be better, and will just wait to talk to my physiatrist again
re: what was said and intrathecal therapy for pain management tomorrow
evening. I will keep everyone updated.
Jenn
PS Does anyone else think butterflies are immature for my AFOs? The colours
are pastel-- pink, blue, a bit of orange, black, but to me they symbolize
freedom, flying... It was love at first sight. I found that the softer
"bootie" really helped with comfort, though... And they will match my Bugsy
walker, which is the same colour purple! :>)