Hi Friends,
I haven’t had a chance to look at my e-mail’s received since I left for
L.A. on Tuesday so please allow me the time to read and catch up with all
that has been going on.
First of all, I would like to thank each and every one of you for your
outpouring of encouragement and support to both me and my husband. There
are a few people that I would like to thank for going above and beyond to
help us.
1. We would like to thank Dr. George Raad in Charlotte, N.C. for taking me
on as a case and treating me with such tenderness and compassion. He has
become more than a doctor to me, he has become a friend.
2. We would like to extend our extreme gratitude to Tom Berdine at YOPD for
starting the petition to Dr. Levesque and getting the word out to everyone
about what we were hoping for. Tom, your support leaves me almost
speechless from the kindness shown.
3. We would like to thank Chy, our online PD radio star, for having us on
his Travels with Parkinson’s so that we could tell everyone what we were
trying to do.
4. We want to thank Pam Bower for spreading the word about the petition and
offering her support to us.
5. We would like to thank Joan Hartman, Rayilyn Lee Brown, Aletta Mess,
Bruce Landress, and all those who wrote to Robert and helped him during the
past few weeks.
Dr. Levesque spent over 2 hours with us and examined my MRI’s, CT’s and
glucose PET scans from 1999 – present. He found the problems back in 1999 –
2000 series of the MRI’s…. the same MRI’s that all the other neuro’s that I
had seen also had and read. The difference is that he did not miss anything
and also made an apt. with a neuro-radiologist at Cedar-Sinai hospital to
confirm what he found, to make sure he didn’t miss anything and to chart the
progression. We also promised him that we would ask everyone to stop
sending him e-mail, fax and phone calls. He has seen me and though
irritated with us, is well aware of the support that we have in the PD
community. So folks, No more correspondence on our behalf. Thank you for
having done it though.
Here are his findings:
1. I do NOT have Parkinson’s Disease
2. I have a type of Multiple Systems Atrophy….defiantly striational nigral
degeneration (SND) but PROBABLY progressive subnuclear palsy (PSP).
3. I have moderate atrophy of the right hippocampus
4. I have severe atrophy and degeneration of the brain stem
5. I have a type 1 chiari malformation
6. I have a cyst on the temporal lobe of my brain
7. I have a cyst in the pituitary gland
8. I have a compressed/herniated disk at cervical 5.
Here is what he said in relation to treatment options:
1. I do not qualify for the stem cell transplant study for Parkinson’s
disease because I do NOT have Parkinson’s disease.
2. I need a F-DOPA PET scan to prove my having SND or PSP.
a. We are having a lot of trouble locating a facility to have this test run.
None available in N.C., called Emory in Atlanta and they no longer are
conducting the PET study on F-DOPA so it is no longer available there.
b. We were told even if we found a place that has the capability of doing
the test:
i. Most insurance companies will not cover this test
ii. I don’t know what the current cost of the procedure is but in March of
2001 when I first started looking into having this done, the cost at that
time was $21,000. Needless to say we can’t pay that.
iii. We need to find and get accepted into an F-DOPA government study so
that it could be paid for even though we have a prescription for the test.
3. Once we get the results of the F-DOPA PET, if it is PSP then there is
nothing more that can be done.
4. IF the results show SND, then Dr. Levesque can recommend us to the board
of research to be considered to be a candidate in the first ever adult stem
cell transplant for someone with a Parkinson’s Plus Disorder….. specifically
and only SND. Dr. Levesque does not have any part in choosing who will get
accepted and will not be doing the surgery himself. He can only recommend
someone. This particular study will accept only 1 person for stage 1
clinical trial.
5. IF I have SND and I get accepted into the clinical trial as the first and
only person to get into it then I will consider having the surgery for the
chiari malformation and the disc.
Here is the information related to the Chiari and disc surgery.
1. The doctor said at this point in time there is no compression from the
Chiari but that does not mean that there never was one.
2. He said that the surgery could make me better, could do nothing or could
make me much worse… there is no way to tell. Also this surgery could take
up to a year for me to heal. The disc surgery could take up to 4 months for
me to heal.
3. With either surgery, he said that due to my immune system and respitory
problems, there is a good chance that they would not be able to take me off
of life support once they intubated me for surgery. He also said that
knowing what he does, he could work with it.
4. If I get accepted into the stem cell trial if I have only SND then a
doctor involved in the study would have to take a biopsy of my brain to grow
more stem cells from. This process lasts 4 – 6 months before the transplant
can be done.
Now everyone has the facts. Here are my wishes.
1. I will agree to the F-DOPA PET scan if we can find a place where we can
have it with our limited funds.
2. IF the test shows PSP, I want no more invasive treatments of any kind.
3. IF the test shows SND AND I get accepted into the stem cell trial
program, I will consider having the chiari malformation and disc surgery at
the same time.
4. If I have SND and am accepted into the clinical trial for the stem cell
treatment, I will go for the treatment.
5. IF the test shows SND and I do not get accepted into the study, I do not
want to have any more invasive procedures.
I love Robert dearly and understand his pain in wanting to save me but I
have come to the point where I accept my diagnosis and am ok with it. Since
I have come to the point of acceptance, I no longer am depressed or afraid.
I hope from the bottom of my heart that Robert can understand that I just
want peace and comfort in my final months and/or days. I don’t want to
participate in any surgery that will take my last year and have to spend
that year recovering from it.
Dr. Levesque told me that my pain will not ever be much more than what I
am currently experiencing. That fact made me feel better. I already know
that I am living with the pain as it currently is.
A couple of more pointers, Dr. Levesque felt that I should try going off
the Sinemet because what I have and the possibility of it actually helping
is minimal. He also wants me to start back on Neurontin, then to start on
Baclofin (spelling) and then fleuronef (spelling) if my orthostatic
hypotension gets worse.
I know Robert might not like everything that I have said but this is what
I heard the doctor to say and these are my wishes based on that. He is also
sending us his report in writing so that there will be no mistaking what his
diagnosis actually is.
Thank you everyone for being my friend and Roberts’s friend through all
that we have gone through. You are appreciated beyond words.
Much Love,
Deborah Setzer aka Tenacity
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