60 Minutes - Deep Brain Stimulation

[Guest guest]

Thank you for the info on 60 Minutes. My Doctor said if Sinemet did not work

that DBS probably would not work. Did anybody else get that reading?

Al

[Guest guest]

Thank you for the info on 60 Minutes. My Doctor said if Sinemet did not work

that DBS probably would not work. Did anybody else get that reading?

Al

[Guest guest]

Last Sunday, 60 minutes had a feature on using Deep Brain Stimulation

to minimize, almost eliminate, tremor, dyskinesia and rigidity in PD

patients. Quoted a 50-60% success rate. Looked very promising for

PD patients. Not sure about MSA. Does anyone know of an atypical PD

patient that was accepted for DBS? If so, what was the outcome?

What are the chances that Cleveland Clinic or Stanford would take in

an atypical PD patient for a study?

[Guest guest]

I had an evaluation at the UCLA Medical Center for PD with MSA. They very

bluntly stated that I was not a good candidate with so many areas of the

brain being affected.

This may not be the case for you. You may have a different conclusion from

a different set of doctors.

I am pursuing going to the Mayo Clinic, If I can get the insurance to pay

for sucha thing, for another opinion. Being 51, I cannot stand to see

myself getting to 52 and still have this problem.

Has anyone ever had psychiatric help dealing with this? I am so angry about

this whole thing, and cannot seem to get it out of my head. The almost

daily deterioration of functions are more than I can stand.

Thanks

Ray

60 Minutes - Deep Brain Stimulation

> Last Sunday, 60 minutes had a feature on using Deep Brain Stimulation

> to minimize, almost eliminate, tremor, dyskinesia and rigidity in PD

> patients. Quoted a 50-60% success rate. Looked very promising for

> PD patients. Not sure about MSA. Does anyone know of an atypical PD

> patient that was accepted for DBS? If so, what was the outcome?

> What are the chances that Cleveland Clinic or Stanford would take in

> an atypical PD patient for a study?

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

From what I have read on this site and elsewhere, it appears that dbs is

only beneficial to movement disorder patients when it has the potential to

benefit patients with dopamine related symptoms, i.e., tremors and/or

rigidity in pd patients. Because MSA patients have multi-system losses, the

dbs is not an option for MSA Patients.

Jerry Cash

>

> shydrager-unsubscribe

>

>

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>

>

[Guest guest]

Ray,

This note is only to get you thinking about where to go. I am not trying to

second guess your doctors - actually I push working with your doctors strongly.

I have no idea what medicines you are currently taking either.

Most people with MSA have been told they are not good candidates for DBS up to

this point. We heard from one person about a year ago that his patient

(mother??) was going to get DBS at the Cleveland Clinic, but never heard another

word about it. Sorry we can't be of more help on DBS. Most of the PD people

have success with stopping tremor, but tremor is not usually a major problem

with MSA. Rigidity is more of a problem with MSA.

My wife had severe depression about 1996 after being re-diagnosed as MSA (dx of

PD in 1990). She and I took grief counseling from a psychologist which did help

both of us. About 2 years ago, she did get a psychiatric evaluation, but they

only suggested that she stay on the 150 mg of Zoloft and 50 mg of Trazadone per

day that she was currently using. ) They said she was experiencing a normal

reaction to the disorder. The psychiatrist did seem to know a fair amount about

MSA and said she had other MSA patients.

We don't usually see " daily deterioration " and even weekly deterioration is rare

with MSA. As we keep saying, that is often a sign of infection. However,

stress will also sap your strength and cause confusion. Are you in some sort of

daily exercise (not necessarily aerobic exercise) program? Range of movement

exercise like arthritis or Tai Chi has helped people here on the list in the

past. Are you carefully watching your liquid intake?

Another problem that we run into with MSA is blood chemistry. Low sodium or

potassium can cause added movement problems. Many of the medicines used for MSA

can upset the blood chemistry, so blood tests every few months can be useful.

Hope these thoughts help you with your current situation. Charlotte was 51 when

first diagnosed as PD and almost 63 when she died. She may have had symptoms

such as fatigue was much as 4 years before the dx of PD.

Take care, Bill Werre

=====================================================

Ray wrote:

> I had an evaluation at the UCLA Medical Center for PD with MSA. They very

> bluntly stated that I was not a good candidate with so many areas of the

> brain being affected.

>

> This may not be the case for you. You may have a different conclusion from

> a different set of doctors.

>

> I am pursuing going to the Mayo Clinic, If I can get the insurance to pay

> for sucha thing, for another opinion. Being 51, I cannot stand to see

> myself getting to 52 and still have this problem.

>

> Has anyone ever had psychiatric help dealing with this? I am so angry about

> this whole thing, and cannot seem to get it out of my head. The almost

> daily deterioration of functions are more than I can stand.

>

> Thanks

>

> Ray

> 60 Minutes - Deep Brain Stimulation

>

> > Last Sunday, 60 minutes had a feature on using Deep Brain Stimulation

> > to minimize, almost eliminate, tremor, dyskinesia and rigidity in PD

> > patients. Quoted a 50-60% success rate. Looked very promising for

> > PD patients. Not sure about MSA. Does anyone know of an atypical PD

> > patient that was accepted for DBS? If so, what was the outcome?

> > What are the chances that Cleveland Clinic or Stanford would take in

> > an atypical PD patient for a study?

> >

> >

> > If you do not wish to belong to shydrager, you may

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe

> >

> >

> >

> >

> >

[Guest guest]

--

Ray,

I see a psychotherapist and she is very easy to talk to and is opened

minded to all my thoughts and concerns. They are not judgemental

either. I do have family to talk too but seeing a psychotherapist she

doesn't have the comments as we don't want to think or talk about

that and you shouldn't either as family members can do. The reason I

see a psychotherapist instead of a psychiatrist is that

psychotherapist talk to you and psychiatrist dont talk to you they

just dispense medicines. If you just wanted meds handed to you see

the psychiatrist if you are like me and need to talk to someone see a

psychotherapist. I called the one I am going to on the phone and

realized after 5 minutes I would feel comfortable talking to her. It

was one of the best decisions I made for myself. I hope this helps

you. It is not a sin to get help if you need it.

Belinda

- In shydrager@y..., " Ray " wrote:

> I had an evaluation at the UCLA Medical Center for PD with MSA.

They very

> bluntly stated that I was not a good candidate with so many areas

of the

> brain being affected.

>

> This may not be the case for you. You may have a different

conclusion from

> a different set of doctors.

>

> I am pursuing going to the Mayo Clinic, If I can get the insurance

to pay

> for sucha thing, for another opinion. Being 51, I cannot stand to

see

> myself getting to 52 and still have this problem.

>

> Has anyone ever had psychiatric help dealing with this? I am so

angry about

> this whole thing, and cannot seem to get it out of my head. The

almost

> daily deterioration of functions are more than I can stand.

>

> Thanks

>

> Ray

> 60 Minutes - Deep Brain Stimulation

>

>

> > Last Sunday, 60 minutes had a feature on using Deep Brain

Stimulation

> > to minimize, almost eliminate, tremor, dyskinesia and rigidity in

PD

> > patients. Quoted a 50-60% success rate. Looked very promising

for

> > PD patients. Not sure about MSA. Does anyone know of an

atypical PD

> > patient that was accepted for DBS? If so, what was the outcome?

> > What are the chances that Cleveland Clinic or Stanford would take

in

> > an atypical PD patient for a study?

> >

> >

> > If you do not wish to belong to shydrager, you may

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe@y...

> >

> >

> >

> >

> >

[Guest guest]

--

Ray,

I see a psychotherapist and she is very easy to talk to and is opened

minded to all my thoughts and concerns. They are not judgemental

either. I do have family to talk too but seeing a psychotherapist she

doesn't have the comments as we don't want to think or talk about

that and you shouldn't either as family members can do. The reason I

see a psychotherapist instead of a psychiatrist is that

psychotherapist talk to you and psychiatrist dont talk to you they

just dispense medicines. If you just wanted meds handed to you see

the psychiatrist if you are like me and need to talk to someone see a

psychotherapist. I called the one I am going to on the phone and

realized after 5 minutes I would feel comfortable talking to her. It

was one of the best decisions I made for myself. I hope this helps

you. It is not a sin to get help if you need it.

Belinda

- In shydrager@y..., " Ray " wrote:

> I had an evaluation at the UCLA Medical Center for PD with MSA.

They very

> bluntly stated that I was not a good candidate with so many areas

of the

> brain being affected.

>

> This may not be the case for you. You may have a different

conclusion from

> a different set of doctors.

>

> I am pursuing going to the Mayo Clinic, If I can get the insurance

to pay

> for sucha thing, for another opinion. Being 51, I cannot stand to

see

> myself getting to 52 and still have this problem.

>

> Has anyone ever had psychiatric help dealing with this? I am so

angry about

> this whole thing, and cannot seem to get it out of my head. The

almost

> daily deterioration of functions are more than I can stand.

>

> Thanks

>

> Ray

> 60 Minutes - Deep Brain Stimulation

>

>

> > Last Sunday, 60 minutes had a feature on using Deep Brain

Stimulation

> > to minimize, almost eliminate, tremor, dyskinesia and rigidity in

PD

> > patients. Quoted a 50-60% success rate. Looked very promising

for

> > PD patients. Not sure about MSA. Does anyone know of an

atypical PD

> > patient that was accepted for DBS? If so, what was the outcome?

> > What are the chances that Cleveland Clinic or Stanford would take

in

> > an atypical PD patient for a study?

> >

> >

> > If you do not wish to belong to shydrager, you may

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe@y...

> >

> >

> >

> >

> >

[Guest guest]

--

Ray,

I see a psychotherapist and she is very easy to talk to and is opened

minded to all my thoughts and concerns. They are not judgemental

either. I do have family to talk too but seeing a psychotherapist she

doesn't have the comments as we don't want to think or talk about

that and you shouldn't either as family members can do. The reason I

see a psychotherapist instead of a psychiatrist is that

psychotherapist talk to you and psychiatrist dont talk to you they

just dispense medicines. If you just wanted meds handed to you see

the psychiatrist if you are like me and need to talk to someone see a

psychotherapist. I called the one I am going to on the phone and

realized after 5 minutes I would feel comfortable talking to her. It

was one of the best decisions I made for myself. I hope this helps

you. It is not a sin to get help if you need it.

Belinda

- In shydrager@y..., " Ray " wrote:

> I had an evaluation at the UCLA Medical Center for PD with MSA.

They very

> bluntly stated that I was not a good candidate with so many areas

of the

> brain being affected.

>

> This may not be the case for you. You may have a different

conclusion from

> a different set of doctors.

>

> I am pursuing going to the Mayo Clinic, If I can get the insurance

to pay

> for sucha thing, for another opinion. Being 51, I cannot stand to

see

> myself getting to 52 and still have this problem.

>

> Has anyone ever had psychiatric help dealing with this? I am so

angry about

> this whole thing, and cannot seem to get it out of my head. The

almost

> daily deterioration of functions are more than I can stand.

>

> Thanks

>

> Ray

> 60 Minutes - Deep Brain Stimulation

>

>

> > Last Sunday, 60 minutes had a feature on using Deep Brain

Stimulation

> > to minimize, almost eliminate, tremor, dyskinesia and rigidity in

PD

> > patients. Quoted a 50-60% success rate. Looked very promising

for

> > PD patients. Not sure about MSA. Does anyone know of an

atypical PD

> > patient that was accepted for DBS? If so, what was the outcome?

> > What are the chances that Cleveland Clinic or Stanford would take

in

> > an atypical PD patient for a study?

> >

> >

> > If you do not wish to belong to shydrager, you may

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe@y...

> >

> >

> >

> >

> >