Glad you're feeling more positive Jenn!

Kat
----- Original Message -----
From: "Jennifer Zubko" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, April 02, 2002 11:44 PM
Subject: My trip to Toronto...


> 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! :>)