Deborah's results from LA and wishes

[Guest guest]

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. 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 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 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 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 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 ’s friend through all

that we have gone through. You are appreciated beyond words.

Much Love,

Deborah Setzer aka Tenacity

_________________________________________________________________

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[Guest guest]

DEBORAH,

MY THOUGHTS AND PRAYERS ARE WITH YOU ALWAYS. I THINK YOU ARE A VERY BRAVE

LADY. KEEP US INFORMED, BECAUSE WE ALL LOVE YOU.

DARLENE TURNER

Deborah's results from LA and wishes

>

> 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. 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 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 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 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 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 's friend through all

> that we have gone through. You are appreciated beyond words.

> Much Love,

> Deborah Setzer aka Tenacity

>

>

>

> _________________________________________________________________

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>

>

[Guest guest]

We are still in this together. God bless you as you make your choices.

So

do we. Barb in Arlington

--

"The greater part of our happiness or misery depends on our dispositions,

and not our circumstances." --Martha Washington