Re: For MSA patients, remedies are elusive

[Guest guest]

Carol,

Was Tony involved in writing the story?

Hugs Bill

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

Carol Langer wrote:

> This appeared in today's Boston Globe as a side bar in an article about brain

pacemakers. Tony Swartz-Lloyd is a member of the Boston area support group.

> ____________________________________________________________

>

> The following story appeared in The Globe Online:

> Headline: For MSA patients, remedies are elusive

> Date: 1/1/2002

> Byline:

>

> " Despite the promise of deep brain stimulation for a number of

> neurologic problems, there are some conditions for which it doesn't

> seem to help, including a baffling - and devastating - condition called

> multiple system atrophy, or MSA, one of several diseases loosely termed

> ''Parkinson's Plus.'' "

> ____________________________________________________________

>

> To read the entire story, click on the link below or cut and paste it

> into a Web browser:

>

http://www.boston.com/dailyglobe2/001/science/For_MSA_patients_remedies_are_elus\

ive+.shtml

> ____________________________________________________________

>

> This message was sent by Carol Langer

> through Boston.com's email recommendation service. If you have questions

> or comments about this free service, please email us at feedback@....

>

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

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

[Guest guest]

Bill,

Tony was the VP of communications at Beth Israel for many years and

knows Judy Foreman (the author) personally. He was instrumental in

sparking her interest in MSA and she interviewed him for the article.

As Rob and I spoke about the article this morning, I complained that

the 6 to 8 year life expectancy was incorrect. Rob's comment was

that is makes the story more dramatic/compelling. Interesting

perspective.

Carol & Rob

>

> > This appeared in today's Boston Globe as a side bar in an article

about brain pacemakers. Tony Swartz-Lloyd is a member of the Boston

area support group.

> > ____________________________________________________________

> >

> > The following story appeared in The Globe Online:

> > Headline: For MSA patients, remedies are elusive

> > Date: 1/1/2002

> > Byline:

> >

> > " Despite the promise of deep brain stimulation for a number of

> > neurologic problems, there are some conditions for which it

doesn't

> > seem to help, including a baffling - and devastating - condition

called

> > multiple system atrophy, or MSA, one of several diseases loosely

termed

> > ''Parkinson's Plus.'' "

> > ____________________________________________________________

> >

> > To read the entire story, click on the link below or cut and

paste it

> > into a Web browser:

> >

http://www.boston.com/dailyglobe2/001/science/For_MSA_patients_remedie

s_are_elusive+.shtml

> > ____________________________________________________________

> >

> > This message was sent by Carol Langer [mailto:cblanger@a...]

> > through Boston.com's email recommendation service. If you have

questions

> > or comments about this free service, please email us at

feedback@b...

> >

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

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe@y...

> >

> >

> >

> >

[Guest guest]

Carol,

I had a long talk with a nurse associated with some sort of movement disorder

caregiving project about MSA. She indicated that we are seeing only a small

portion of the patients and we have become familiar enough to catch the

normal " killers " , so we have increased our patients chances, but statisically

we would need to reach about 10,000 patients to increase the overall survival

rate AND they would have to listen and follow all our recommendations. She

also indicated that this group is NOT representative of all caregivers and

that she felt about 50% of the MSA patients in the USA are in nursing homes

diagnosed as PD. She agreed that this group had found ways to extend life

and quality of life in MSA, BUT it will be at least two years before the

report is published. She also had little hope of even the report increasing

awareness in ER's.

She said (when I showed her the Baylor study about 9.5 median rate of

survival) that even that was biased as those patients were actually being

treated for MSA and they feel that more than 50% of MSA patients are not

being treated for MSA. She also said that PSP and other PD+ disorders were

also probably under reported, from her experience.

She was surprised that I knew as much as I did about the disorder. This came

up indirectly through my earlier caregiving panel - have to call them - they

never sent a copy of their final report to me. It WAS nice to talk to a

medical person who actually understood MSA and it's caregiving problems. She

did point out that there are more than 40 rare movement disorders which have

similar caregiving problems (or worse problems). Her project is the one that

was to be funded in the rare disorder education for nurses funding Bill in

Congress which was cut as not important enough after Sept. 11th - even though

there are 20 million people with rare disorders in the USA.

Tell Tony to hang in there, we NEED more of this type of news reporting.

September 11th to me will always be the day that Charlotte went into the

hospital for the final time (and she got no news headlines). Sorry, but she

was a foster mom to three kids, Sunday School teacher, and someone who always

took time for kids all her life, even to the morning she died.

Take care, Bill

cblanger49 wrote:

> Bill,

>

> Tony was the VP of communications at Beth Israel for many years and

> knows Judy Foreman (the author) personally. He was instrumental in

> sparking her interest in MSA and she interviewed him for the article.

>

> As Rob and I spoke about the article this morning, I complained that

> the 6 to 8 year life expectancy was incorrect. Rob's comment was

> that is makes the story more dramatic/compelling. Interesting

> perspective.

>

> Carol & Rob

>

>

> >

> > > This appeared in today's Boston Globe as a side bar in an article

> about brain pacemakers. Tony Swartz-Lloyd is a member of the Boston

> area support group.

> > > ____________________________________________________________

> > >

> > > The following story appeared in The Globe Online:

> > > Headline: For MSA patients, remedies are elusive

> > > Date: 1/1/2002

> > > Byline:

> > >

> > > " Despite the promise of deep brain stimulation for a number of

> > > neurologic problems, there are some conditions for which it

> doesn't

> > > seem to help, including a baffling - and devastating - condition

> called

> > > multiple system atrophy, or MSA, one of several diseases loosely

> termed

> > > ''Parkinson's Plus.'' "

> > > ____________________________________________________________

> > >

> > > To read the entire story, click on the link below or cut and

> paste it

> > > into a Web browser:

> > >

> http://www.boston.com/dailyglobe2/001/science/For_MSA_patients_remedie

> s_are_elusive+.shtml

> > > ____________________________________________________________

> > >

> > > This message was sent by Carol Langer [mailto:cblanger@a...]

> > > through Boston.com's email recommendation service. If you have

> questions

> > > or comments about this free service, please email us at

> feedback@b...

> > >

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

> > > unsubscribe by sending a blank email to

> > >

> > > shydrager-unsubscribe@y...

> > >

> > >

> > >

> > >