Maybe I AM CRAZY, BUT I e-mailed the neurologist again. I HAVE ALSO CALLED
AND LEFT A MESSAGE WITH A SOCIAL WORKER AT THE HOSPITAL.

What does everyone think? The thing is, he cannot deny the mistakes he
made (EMG, promise about the one intrathecal baclofen trial), etc.
I HAVE SAVED THE LETTER TO BRING TO THE SOCIAL WORKER/ADVOCATE IF I NEED TO.

Jenn
Dear Dr. Strong,

My apologies for writing to you, even though you told me this was no
longer allowed. I received a phone call today from Breeda O' Farrell
asking me to return to the hospital as an inpatient to have a placebo
controlled trial done over a period of three days with both baclofen and
saline.

I have several objections to this, and want to voice them. First of all,
you promised me during  DECEMBER 18, 2001 clinic appointment with you that
I WOULD NOT HAVE TO UNDERGO PLACEBO CONTROLLED TRIAL TO BE CONSIDERED FOR
THE INTRATHECAL BACLOFEN PUMP. Also, the team cn see from my pain scores
throught the trial day on January 25th, 2002, and in subsequent pain
evaluations that my pain markedly decreased after intrathecal baclofen
injection, then whent up to eight to nine out of ten on pain scales two
weeks after injection. There can be no dispute about that.I also sent you
an e-mail regarding the success of the trial, and, as a patient, cannot
comprehend why you want to put me through more testing when I know that
the Intrathecal Baclofen helps immensely.

Breeda stated on the phone that she thought I did not trust the team in
London. She is right. How can I trust you when my questions were not
answered the day of the trial  (and I had pages of them). I tried to be
helpful and called to give both you and Breeda O'Farrel the names of
medications you had suggested for dystonia, but was reprimanded for this.
All I am trying to do is advocate for myself, and save you looking through
paper work which has been misplaced. I am in pain and cannot wait a week
for pain medication. As it is, I just increased my dose of morphine. I
also saved myself another appointment in the EMG Lab by knowing that my
RIGHT HAND is my LEAST AFFECTED BODY PART, AND THAT MY LOWER EXTREMETIES
SHOULD BE THE ONES STUDIED.

What makes me not want to trust you still more is that you don't believe
the test results of January 25th, which clearly show, without a doubt,
that intrathecal bacofen decreased my pain. It makes me feel as if you do
not believe my assessment of my own body-- and in my opinion, the views of
a patient should come first when assessing any treatment.

Breeda O'Farrell stated during our phone conversation that you did not see
reduction of my dystonia with intrathecal injuction. This is because it is
impossible to see with a bolus injection. Based upon my research, patients
with dystonia must be taken to the operating room to have a temporary
intrathecal pump placed, then have increasing doses over several days to
see if the treatment will be of assistance to them. So if you would like
to deal with my dystonia with intrathecal baclofen, the team is going
about testing the wrong way, AND THE TEAM SHOULD NOT HAVE USED THE BOLUS
INJECTION AS A JUDGEMENT OF DECREASING DYSTONIA.

My gait also improved for 2 days after intrathecal injection, and I did
not need to take any medication for twelve hours afterwards. At the
moment, I need to take 5 mg of morphine every two hours. Oxazepam 3 times
per day, and 4 mg Clonazepam at night.

I sleep 12-16 hours a day, yet when I had intrathecal injection (and for a
few days afterwards), I was actually able to do some academic work because
I was not bogged down with oral medication that made me groggy. I don't
know why this is not evidence enough for the team to implant the pump,
when surgical time arises.

 Furthermore, I was also asked why Dr. Leland Albright contacted Dr.
Parrent. He did so without my knowledge, and I ONLY KNEW ABOUT THE
CORRESPONDENCE WHEN DR. PARRENT CALLED ME AND ALMOST YELLED AT ME ON THE
PHONE BECAUSE OF IT. Ihave been in touch with Leland Albright for over
three years, and he was trying to help simply because he cares about me,
and knows how much pain I am in. THERE WAS NO OTHER REASON.

I do feel like a number when dealing with the people in London, whether it
is being on waiting lists, or waiting for phone calls to come when I think
I am only trying to assist you, (politely), and yet still get what I need.
I do not think I should be chastised for contacting anyone on the Movement
Disorders team, either by phone, fax, or e-mail. If I need your help, I
should have every right to ask for it.

I HAVE AGREED TO GO THROUGH THE TRIAL IF YOU REALLY WISH ME TO, BUT HAVE
SEVERAL STIPULATIONS.

1. I will not share any of my pain scoring with anyone on the trial until
after both the placebo and genuine baclofen are given.I will however, fill
out the sheets on an hourly basis on my own.

2. I reserve the right to have my own medications at the bedside and take
them as needed, though I will record how much I take. I need to do this
for a physiatrist in Ottawa anyhow.

 Again, I don't feel as if you trust my own intuition about my own body,
so how can I trust you as a team?

Please explain why a placebo controlled trial is necessary when I had such
a good response and no objections from any member of the Movement
Disorders team on January 25th.

However, perhaps another appointment will work to my advantge so you can
see me in true agony.

 I had wanted to go to Toronto to visit relatives next week after my baby
nephew is christened, so that I might see him meet his great grandparents
for the first time, but if I must be admitted to hospital for your
satisfaction, this will not be a reality.

Sincerely,

Jennifer M. Zubko