Re: Where to turn? MSA information

[Guest guest]

Jane,

Be sure to check under " symptom management " (on of the links) and check out

the information on speech and swallowing (and any other problem areas your

dad's having).

Rose

----Original Message Follows----

Reply-To: shydrageregroups

To: shydrageregroups, cartermt@...

Subject: Re: Where to turn? MSA information

Date: Mon, 30 Oct 2000 13:42:23 -0400

Hi Jane,

If you haven't already please check out the LINKS page at:

/links/shydrager

Note you must first " sign in " with your email address and password. If

you don't know your password go here: /remind

You'll find lots of information on MSA symptoms, where to find

specialists, current research etc. If you have any questions at all

please keep asking.

Regards,

Pam

[Guest guest]

jane,

You father does seem to have " all the classic symptoms " ! You didn't

mention where he lives, although I assume it's somewhere in eastern

Massachusetts or southern New Hampshire. Do you think he and your

mother and sister would be interested in joining the support group

that meets in Boston? You are welcome to, if you are in this area.

The 2 medications you mentioned are pretty standard in treating

SDS/MSA. Unfortunately, the sinimet, which is for the Parkinsonism,

makes the blood pressure drop, which is tough for SDS/MSA patients.

The flourinef is, as you probably know, to increase the blood

pressure. The flourinef needs to be taken with salt - either salt

tablets (Rob takes Thermotabs, a buffered salt tablet which is

available at CVS, although it must be ordered)or by consuming VERY

salty foods, such as instant bouillion. Flourinef is slow acting and

long acting, and many people also take proamatine (a/k/a midrodine)

which is shorter acting but quicker. Something to ask the docs.

There is a fairly new laxative called " Miralax " which is available by

prescription and really works very well. It is one of the few things

that can be used over a long period of time with out causing serious

bowel problems. It is a powder that is mixed with water, forming a

solution that is tasteless and has the consistency of water. NOT

gross at all, which most of the other stuff is! Another thing to ask

the doc.

Many people with incontinence get relief by self-cathing. It sounds

awful, but what happens is that the bladder doesn't empty all the

way, so it overfills and overflows. If that doesn't work, men have

the option of using a condom cathater, which fits over the penis like

a condom and empties through a tube into a bag which can be attached

to the leg and worn under the clothes.

It IS possible to manage this illness. Rob still plays golf,

although he sometimes has to cut his game short if he's feeling weak

or tired. The key is to do what you like, and to listen to your body

and quit before you go too far. Rob is 54, and was diagnosed almost

3 years ago. His symptoms are not too bad, but he participated in a

clinical trial for a new medication this summer and had to go off all

his regular meds for more than 2 weeks. We learned that without

them, he is really sick! The meds help a great deal, but it takes

patience on the part of both the patient and the docs to find the

right balance. And even at that, there will be bad days.

For the voice and swallowing, speech therapy helps, but the patient

must continue to practice. There is a type of therapy called the

Silverman method, which was developed for Parkinson's patients, which

is what is generally prescribed. It works on volume, but also helps

articulation and swallowing.

As far as raising the head of the bed, be sure you continue to do

that even with the hospital bed. The whole head of the bed needs to

be raised by putting blocks under the head. Just raising the top of

the bed with a regular hospital bed control will not work nearly as

well, and it also puts pressure on the diaphragm, which can cause

breathing problems.

Okay, I've gone on long enough. Hope this helps!

Carol & Rob

Lexington, MA

> You all have been so helpful. I already know a mountain of

information in

> one day compared to what I knew yesterday at this time.

>

> My father's symptoms seem to be pretty classic, from what I have

read in

> various articles.

>

> Low blood pressure and then it races high and out of control. He

had a pace

> maker put in about 2 months ago.......dizziness.....his voice is

very quiet,

> he gets headaches, incontinence, constipation, difficulty

> swallowing......gets tired very easily.....shuffles when he walks,

> experiences the 'freeze' episodes and blacks out, but regains

consciousness

> when he is lying straight.

>

> His gait is unsteady and he leans forward when he walks...he can't

walk far.

> He has been getting a little more disoriented lately too. He was

on Sinemet

> and Flourinef (excuse the spelling)....but after his last hospital

stay was

> taken off both medications.

>

> Support hose seem to help, raising the head of the bed (until we

get him a

> hospital bed) helps too.

>

> He is very strong willed, and he had difficulty accepting that he

could no

> longer shave with a razor, he would have a hard time shaving, he

would often

> fall, and have a bad spell after his shaving routine. My Mom has

gotten him

> to use an electric razor. She supervises him in most of these

situations.

>

> Dad, tried very hard to golf up until as recently as 2 weeks ago.

He was

> taken from the golf course via ambulance and to the emergency room

where his

> blood pressure was 213/(can't be sure of the bottom # exactly. ) He

blacked

> out and has no memory of the blackout. That has been happening

more and

> more frequently.

>

> My sister is living with my parents presently, and has been having

her home

> remodeled to accommodate my father.......I have been going as often

as I can

> to visit, and give my sister and or Mom an opportunity to go out.

>

> I am a musician, and always turn to music as a source of comfort,

either

> playing or listening. We have found that listening to certain

music has had

> a profound effect on my father's state of mind. Often he would

have a look

> of fear, and the music has taken much of that away. He never knew

that he

> " liked " this particular type of music, and he listens to it more

than

> anything else........(when he goes to sleep, this afternoon when

his blood

> pressure was elevated and he had a headache, he listened to

it......)

>

> May I recommend the CD " DEEP PEACE " by Bill ....it has helped

> tremendously. If you're interested in other therapeutic music, let

me know.

> I'll tell you what has helped my father.....so far this one is

tops...when a

> DR or Nurse or anyone would come in, he would ask them to come and

hear the

> music.......

>

> Warm Regards,

> jane

> Re: Where to turn? MSA information

>

>

> > Hi Jane,

> >

> > If you haven't already please check out the LINKS page at:

> >

> > /links/shydrager

> >

> > Note you must first " sign in " with your email address and

password. If

> > you don't know your password go here:

/remind

> >

> > You'll find lots of information on MSA symptoms, where to find

> > specialists, current research etc. If you have any questions at

all

> > please keep asking.

> >

> > Regards,

> > Pam

> >

> >

> >