Re: Re: Bill and Aletta >Bill Werre

[Guest guest]

Bill:

Now who would I get to tease if you go off the list? It wouldn't be the same. I'm sorry that there seem's to be a problem going on between a few of you, but you've been a really big help to so many of us and I don't think it is fair for other's to suffer,just because of something else that is going on.I'm sure I'm not the only one that feels this way. I really do wish you would stay here with us. Please,please, please. If that's not enough please's I can send more. If someone doesn't want to read what you wrote, well they can just go onto the next posting and if there is someone that you don't want to read the posting of , just overlook their posting. You may not beable to help everyone and I know some may not agree, but I know that you have the best in heart for all of us. This list isn't home without you.

Now do I have to get down on knee to get you to stay, I will you know that. Think about all of us other's here that want you to stay.I get the right to vote and my vote is in, I'd like you to stay.

Hugs Vera

Zac,

Sorry you think I am rude. Maybe it IS time for me to leave the list. I

will work with the DC group and anyone is free to ask me off list about

problems they are having. I tried to take this discussion off the list and

she (and now you) brought it back on the list.

In truth any MSA patient who has an infection can (and usually does) have

tachycardia. My reference to beta-blockers was from MY experience and it is

used for coronary artery disease (I have had a triple bypass). In truth ANY

person with tachycardia should not be using uppers and downers. MSA, POTS

and PAF patients using uppers and downers can not distinguish between side

effects and their normal disorder symptoms. I personally feel that if I am

wrong about MSA patients using these drugs, no one is hurt. However, if I am

right and someone dies from using them, was I right to be rude?

Some facts:

Fact: opiates and uppers cause MSA like symptoms - AM I wrong?

Fact: the use of AMPHETAMINES by patients with tachycardia can cause death -

AM I wrong?

Fact: None of my wife's movement disorder specialists or geriactric doctors

ever wanted her to have uppers or downers, because they felt it was dangerous

for her to use them because of the MSA - were they wrong?

Fact: under information for patients for this group of drugs it states:

"Amphetamines should not be used to combat unusual tiredness or weakness or

replace rest. When used for these purposes, they may be dangerous to your

health."

PLEASE ask your doctor (preferably a movement disorder specialist and not a

psychiatrist) before taking these drugs if you have ANY movement disorder.

Take care, Bill Werre

[Guest guest]

I ditto what Vera says, Bill! Haven't been posting lately, but read it all - Bob is recovering from heart attack, but, after ST and PT since March, not much progress in speech, and balance only improving some. He is stronger, however. We are now looking at alternative communication devices. His attitude remains so good, and still 100% cognitive.

Thanks to you we were alerted to our first (and ONLY, so far!) urinary tract infection and pneumonia (no reoccurences there, either!) We've learned so much about swallowing, hydration, temperatures, etc. - please do stay on the list - your experience/advice/thoroughness are so important to so many of us! (Oh - you were also right in highly recommending the PEG tube when indicated - we had one inserted out of necessity after the heart attack, and what a great way to maintin hydration!!)

Amazing how we do adjust to things, isn't it? Hang in there, Bill - we all love you.

Best regards,

Bob and Elaine Grimmesey