Hi Jen,

I have been quietly praying for you as I have been deeply concerned about
your situation.

I believe all things do really work together for good. I have been going
through a particularly traumatic experience myself, since July 2000. When in
one day I lost all my independence for several months as a result of an over
prescribed drug and the lack of duty of care from my Dr. My muscles
collapsed and I was bedridden for four months. I now have almost complete
strength back but suffer very badly from a sense of constant wobbliness
and/or a vibrating feeling which can be all over my body or in one spot.
Every day I wake up to a different scenario. It prevents me from living the
lifestyle I am accustomed too and also prevents my husband from going very
far away from home as I am still reliant on him to toilet me.

Further more the Dr. has written a totally useless referral to a
Neurologist, which is nothing less than a complete cover up. Sighting my
"poor speech as his reason for not being able to get a history on me". Mind
you he has been my Dr. since 1985 and in the past we have enjoyed many
conversations, even laughs. Also, at times when I have felt the need, I have
emailed him. So I know for sure, he understood what I was saying! Whenever
he didn't, he always asked me to repeat myself. In the referral, there is at
know point any mention of the offending drug. Prednisolone.

BUT through all this, good things have happened. I have a deeper
relationship with my husband ands step-daughters. I have sorted through a
lot of 'stuff'. I had been born with CP, but never knew the deep rooted
anger I had, until I was totally dependent and could do nothing but wait for
time to strengthen my muscles again. I was frightened, grieving and very
angry. I am a Christian and had to first forgive God. Then he asked me to
forgive the Dr. Not just forgive in my heart. But actually email him and
tell him I forgave him.

God will NEVER allow ANYTHING to happen to His kids, He does not know they
can handle. Much as I sometimes still feel otherwise.

I can feel your anger and completely understand. HOWEVER Jen, I truly
believe your prayers have been answered. You say you have been praying. Many
others have been praying very much for you as well. Sometimes, the answer we
receive, is not what we expect or want so we say, that's NOT God and keep on
asking.

Jen, God has answered your prayers abundantly. This man recognizes you
understand your disability. He recognizes you as a self advocate. He
genuinely cares about you and is not racing in and doing anything without
very careful tests. He and his team have spent time going back and reviewing
your case. They are humble enough to admit their first appraisal may be
wrong. They are prepared to do more tests before operating. Yes, he is
saying he is exasperated by your 'self advocacy'. I personally think the
only thing he has not done is communicate with you as he should have in the
past. But he has done this now.

Jen, I feel to say this...

"Calm yourself, takes some deep breathes and pray asking to have your eyes
open. Then read the letter again. Asking for His grace to read the letter
with an open mind. Then pray, asking God to make your will His will. Know
with your heart He is in charge. Trust Him, He will not allow the Dr. or his
team to do what is not His will for you."

I will keep praying, He truly does have the answers, we just have to ask
with an open mind.

Bless you,
Roslyn.


Date:    Fri, 15 Feb 2002 22:05:58 EST
From:    Jennifer Zubko <[log in to unmask]>
Subject: letter back from neurologist

This is the letter I RECEIVED BACK FROM THE NEUROLOGIST. I DON'T KNOW HOW
TO FEEL EXCEPT EMPTY AND ANGRY, BUT WILL HAVE TO PLAY THEIR GAME, I GUESS.
I WILL JUST DO LOTS OF PHYSICAL ACTIVITIES THIS WEEKEND SO THAT I AM IN A
LOT OF PAIN FOR THEM. WHAT BOTHERS ME IS THAT THEY STILL THINK I CALLED
THEM TO MUCH AND THAT I FORCED DR. ALBRIGHT TO CONTACT THEM. I HAVE TOLD
THEM THREE TIMES THAT I DID NOT DO THIS. PERHAPS I WILL HAVE TO GET DR.
ALBRIGHT TO FAX THEM HIMSELF TO CLEAR MY NAME. PLEASE PRAY FOR ME. I AM
STILL SO UPSET.

Jenn

15 January 2002

Miss Jennifer Zubko

Re: Intrathecal baclofen

Dear Miss Zubko,

In follow-up to your discussions with Breeda O'Farrell and with other
members of the intrathecal baclofen program, I thought that I had best
correspond with you directly to clarify the need to proceed to a
double-blind, placebo-controlled trial of intrathecal baclofen.

To place this into context, your must first be aware that the implantation
of an intrathecal pump is not without complication, both in the short and
long-term.  When the desired effect is to relieve spasticity that has been
refractory to more traditional therapies (specifically medications such as
baclofen orally, tizanidine, clonidine, etc.), the determination of who
has benefited from therapy is often relatively straightforward and can be
objectively measured.  The indication to proceed to a pump implantation is
then fairly clear and often outweighs the risk of the procedure itself.

When we embarked upon your trial, we had hoped that the addition of
baclofen intrathecally would significantly benefit you with regards to
mobility and your daily activities.  Indeed, I think that we all were
impressed with the benefit that you seemed to achieve following the single
injection of baclofen.  However, when we thoroughly reviewed all of the
measures that we undertook (before, during and after the injection), the
degree to which your activities and mobility improved and then remained as
such could not be explained on the basis of a reduction in spasticity.  In
fact, when we objectively reviewed the measures of your tone, there was no
appreciable change.  As you have clearly pointed out, what transpired was
in fact a significant reduction in your pain.  Hence, although we
discussed pump implantation at that time and indicated that we would
proceed with it, for the reasons below, it would not be a reasonable
procedure at this time.

When the endpoint of intrathecal therapy becomes that of pain management,
as it has now become to a large extent with yourself, then we must be very
cautious in the optimism with which we proceed.  The use of intrathecal
baclofen then becomes more questionable, and the risks of proceeding begin
to outweigh the benefits.  Before proceeding, and as with all patients in
whom we are contemplating such a procedure for pain management, a
double-blind placebo-controlled study must be undertaken in order to
determine the extent to which you may or may not benefit from such a
procedure.  I am certain, given your understanding of your disability,
that you would not wish us to offer you a procedure that we could not
assure you would be of benefit.

As such, we have arranged for you to proceed with admission next week for
three days in order to undertake this trial.  The first and third days
will require a lumbar puncture for administration of either baclofen or
placebo.  Neither you, I or the team will know the difference (the
pharmacist will).  The middle day will be a day of recovery and of an
intensive review of your pain syndrome and the goals of the program.  I
must caution you that a trial of this sort is a day to day process.  The
decision as to whether the Thursday injection will proceed will however
ultimately rest with me and will be based solely on the issue of whether
the Thursday injection will be timed correctly to help determine it's
effectiveness.  A greater time window between injections than a single day
may be required.

In the conduct of this trial, we will be undertaking a pain rating.  Once
you have completed an individual rating, we will be collecting it
(hourly).  Although Breeda has indicated that we might leave these at your
bedside, we will be collecting it after each hour.

Jennifer, you must be aware that we as a team are committed to helping you
to determine whether this will truly be an effective therapy.  Equally as
important, we are committed to ensuring that we do not put you at risk for
a therapy that may in fact be of no value to you.

I must also indicate to you that all members of the team are becoming
increasingly frustrated with your inability to demonstrate a reasonable
degree of restraint when advocating for yourself, either through e-mails,
telephone calls, or indeed in contacting other neurosurgical centers to
apply pressure to advance a surgical date.  While you have our absolute
commitment to work with you to achieve your goals, there are limitations
to what we can in fact provide to you.  These limitations will be
discussed with you during your admission.

If you feel that you cannot agree to proceeding with this trial, and more
importantly abide by the decisions that will arise from it, then I would
strongly urge that you not proceed further.  Further, should the trial
prove effective, then I will also need your complete assurance that you
will abide by our decisions with regards to the timing of the pump
implantation.

If you do not wish to proceed, then please let my secretary know on Monday.

Sincerely,





Michael J. Strong, MD, FRCPC