Re: Life expectancy - ROBERT - DIAGNOSIS?

July 11, 2002

ROBERT.

THANKS FOR THE POSTING...

MEMORY FAILS ME, AND I HAD ALREADY FORGOTTEN THE SIMILARITIES BETWEEN

TENACITY AND ME.

ON A DAY SUCH AS TODAY, IT IS AN ODD COMFORT TO BE REMINDED THAT

THERE ARE OTHERS LIKE ME. I HAVE BEEN BLESSED THAT I HAVE NOT

REGRESSED TO SUCH A POINT AS YOUR WIFE (YET?)

I DO WONDER... HOW WAS SHE DIAGNOSED? IF I RECALL, SHE HAS SEEN

MULTIPLE NEUROS WHO DX HER WITH MSA. DID THIS OCCUR PRIOR TO HER

RECENT REGRESSIVE EPISODE?

I'VE HAD AN INTERESTING DAY, BUT WILL MAKE ANOTHER POSTING OF THAT.

THANKS AGAIN FOR RESPONDING TO THIS. I REALLY FELT LIKE PERHAPS I

WAS 'ODD MAN OUT' - DUE TO MY AGE.

PAUL

> Thanks Jerry,

>

> Only her grandfather had Pd. So actually, there is not some real

link to her

> MSA condistion. None of her family going back 3 generations had PD

except

> her grandfather. Thanks for your infomation though.

>

> " tenacity's man "

>

> >From: Jerry Cash

> >Reply-To: shydrager@y...

> >To: " 'shydrager@y...' "

> >Subject: RE: Life expectancy

> >Date: Wed, 10 Jul 2002 08:43:54 -0500

> >

> >Hello ,

> >

> >I read a bit about the hereditary ataxias back when we were

looking for

> >answers to my brother's symptoms (before he got his dx of MSA) and

if I

> >recall correctly some of the hereditary ataxias have an aspect

called

> > " anticipation " which essentially means that in succeeding

generations the

> >symptom begin earlier and are more severe than in the prior

generation. Of

> >course, if Deborah has MSA then this would not explain her early

onset

> >and/or rapid progression.

> >

> >Regards,

> >

> >Jerry Cash

> >

> > Life expectancy

> > >

> > >Hello,

> > >

> > >My name is Thom. I live in Atlanta. My father, age 76, has been

> > >diagnosed with Shy-Drager. Although the diagnosis was

> > >reletively recent, he first began to exhibit symptons, most

> > >noticably, postural hypotension and the associated blackouts

> > >and dizzyness, about three years ago. He was diagnosed in

> > >March when he had to be hospitalized due to a rapid

> > >deterioration in his physical condition. In a matter of weeks he

> > >went from being relitively normal to being bed-ridden. He is

> > >extremly weak. He is unable to sit up unassisted, he can not

> > >walk or stand at all. He has lost about 20% of his body weight.

> > >He has had to be catheterized and his kidneys are functioning at

> > >50%. When he is awake he often appears to be catotonic,

> > >staring blankly into space. He is in a nursing home where he is

> > >under a doctor's care, but they are having trouble keeping his

> > >electrolytes balanced, he has recently started vomiting after his

> > >meals and he has developed a MSRA infection in his urinary

> > >tract.

> > >

> > >I have read some of the literature on the various web sites and

> > >they all say that life expectancy is seven to ten years from

> > >diagnosis. Here is my question; given the rapid onset and his

> > >current condition, is seven to ten years a realistic prognosis?

It' s

> > >very difficult to imagine that this would continue for that

length of

> > >time. I would really appreciate any experiences you might be

> > >willing to share or any insights you might have.

> > >

> > >Please feel free to respond to me directly at my e-amil address,

> > >tgillott@a... Thank you all so much,

> > >

> > >Sincerely,

> > >Thom in Atlanta

> > >

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

> > >unsubscribe by sending a blank email to

> > >

> > >shydrager-unsubscribe@y...

> > >

July 11, 2002

Hi Jerry,

Deborah was Dx with pd in 99, and MSA in 2000, DBS in Dec 01 and removed in