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Re: Help! -

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Hi ,

Sorry you had to find us, but welcome to our group.

You need to talk to your dad's doctor immediately about a swallowing study and

speech therapy. It can help your dad at least somewhat.

If he has recently gone downill rapidly, he should also be tested for all types

of infection as that causes rapid deterioration in MSA patients. Once the

infection is cured, the patient can often come back greatly with physical and

speech therapy.

To help you more we need more info. What meds have they tried him on, what ones

is he currently taking, specific symptoms, when did it all start, was he first

dxed as Parkinson's, etc.

My wife stayed at home except for two bouts with blood infections which required

4-6 week stays in hospital/nursing (rehab) homes. She died at home last

Novemeber after fighting it for 12 years.

Take care, Bill Werre

>

>

> Date: 2002/08/17 Sat AM 10:57:31 CDT

> To: shydrager

> Subject: Help!

>

> I am new to this group and am desperately searching for help with my

> Dad's care. He is 73 and was diagnosed with MSA nearly a year ago.

> He has suffered with sypmtoms of the disease for much longer, as you

> know it often takes a long time for an accurate diagnosis. He is no

> longer able to speak, is rarely able to walk and often has difficulty

> swallowing his meds. I agree with my mother that we do not want to

> remove him from their home (this has always been a great fear of

> his), but I don't know how much longer we can give him the care he

> needs in order to be comfortable. They live in the Baytown, Texas

> area. If any of you have any suggestions, they would be greatly

> appreciated.

>

> Thanks,

>

>

>

>

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

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

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Thank you for responding. My dad is currently taking Sinemet and Comptan, 4 times daily. He also takes Lasix, Paxil, Casodex and Proscar (for prostate cancer), he takes Pepcid, EZ Lax, and occassionally, Ativan. The doctors have previously tried Mirapex, with no success. They also tried the Long Lasting forms of Sinemet, which seemed to create more dyskenesia and anxiety. He is now using his wheelchair 90% of the time, has great difficulty with incontinence, can occassionally get out one or two words, and seems to now longer find much joy in living. I know a cure is not going to happen.....I just so wish he could be comfortable. He is so anxious that he really can't seem to stay in one place for more than a few minutes at a time. Recently, his urologist went in to do a cystoscopy to check for scar tissue from last year's prostate surgery, and found a large bladder cyst. Of course, this was removed and we had high hopes the incontinence would improve. Sadly, it did not. For a little background on my dad, he is an only child and has always been extremely independent. He worked for the Federal Gov't until retirement at 71. He built both the house I live in and the one he and my mother live in. He has always done all of the home and vehichle repairs for our entire family. He was very active in church, extremely devoted to both church and family. Losing him a little at a time is killing me!

He is seeing the doctors at the Baylor College of Medicine's Movement Disorder Clinic in Houston. Any words of advice or experience you can offer would be appreciated.

Thanks,

From:

To: shydrager

Date: Thu, 22 Aug 2002 8:31:03 -0500

Subject: Re: Help! -

>

> Hi ,

>

> Sorry you had to find us, but welcome to our group.

>

> You need to talk to your dad's doctor immediately about a swallowing study

> and speech therapy. It can help your dad at least somewhat.

>

> If he has recently gone downill rapidly, he should also be tested for all

> types of infection as that causes rapid deterioration in MSA patients.

> Once the infection is cured, the patient can often come back greatly with

> physical and speech therapy.

>

> To help you more we need more info. What meds have they tried him on,

> what ones is he currently taking, specific symptoms, when did it all start,

> was he first dxed as Parkinson's, etc.

>

> My wife stayed at home except for two bouts with blood infections which

> required 4-6 week stays in hospital/nursing (rehab) homes. She died at

> home last Novemeber after fighting it for 12 years.

>

> Take care, Bill Werre

> >

> > From: "nanababies1997"

> > Date: 2002/08/17 Sat AM 10:57:31 CDT

> > To: shydrager

> > Subject: Help!

> >

> > I am new to this group and am desperately searching for help with my

>

> > Dad's care. He is 73 and was diagnosed with MSA nearly a year ago.

>

> > He has suffered with sypmtoms of the disease for much longer, as you

>

> > know it often takes a long time for an accurate diagnosis. He is no

>

> > longer able to speak, is rarely able to walk and often has difficulty

>

> > swallowing his meds. I agree with my mother that we do not want to

> > remove him from their home (this has always been a great fear of

> > his), but I don't know how much longer we can give him the care he

> > needs in order to be comfortable. They live in the Baytown, Texas

> > area. If any of you have any suggestions, they would be greatly

> > appreciated.

> >

> > Thanks,

> >

> >

> >

> >

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

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe

> >

> >

> >

> >

> >

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