Guest guest Posted June 17, 2002 Report Share Posted June 17, 2002 Bill, I also am asking you to PLEASE reconsider about not leaving the group or the list. I do not write alot, but I read faithfully every day for the valued info I get. You have been such a great source of info for not only me but my GP. You have also been an inspiration to me many times when i needed it most. Thank you for all you have given to all of us. Meg shydrager wrote: >If you do not wish to belong to shydrager, you may >unsubscribe by sending a blank email to > >shydrager-unsubscribe > > > >------------------------------------------------------------------------ > >There are 13 messages in this issue. > >Topics in this digest: > > 1. Re: Digest Number 1557 > From: Cowgirl711@... > 2. Re: Re:Ritilin > From: TFPSteed@... > 3. Re: Re: Bill and Aletta > > 4. Re: : Re: : Re: Vera >Bill T > From: W489@... > 5. Re: LALouise/dementia update > > 6. Re: : Re: : Re: Vera >Bill T/ Vera > > 7. Re: Hej Hans > > 8. Re: Re: Bill and Aletta >Bill Werre > From: FVJAMES@... > 9. Re: : Re: : Re: Vera >Bill T > From: FVJAMES@... > 10. Re: : Re: : Re: Vera >Bill T/ Vera > From: FVJAMES@... > 11. Re: Reminder - MSA CHAT > > 12. Re: Bill and Aletta > > 13. Re: About Health Segment on MSA > > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 1 > Date: Sun, 16 Jun 2002 23:07:03 EDT > From: Cowgirl711@... >Subject: Re: Digest Number 1557 > > > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 2 > Date: Sun, 16 Jun 2002 23:41:35 EDT > From: TFPSteed@... >Subject: Re: Re:Ritilin > >each time my dr. adds a new drug he increases the sinemet. new drug works a >while, then i get all " overdose symptoms " of sinemet. why do you suppose he >doesn't decrease sinemet? he always says to stop the new drug. > i think i asked this before but i didn't make it clear that he had >done 2 things at once,......a new drug added and the old one increased. i did >ask him last visit but think he just shook his head. it is my ccontention >that each time we make additions to my regime, my BP goes d o w n! > he will return in july so we'll see what he says. > THANK YOU ALL FOR ANSWERING SO QUICKLY AND FULLY. YOUR PRESENCE HAS >HELPED ME SEVERAL TIMES IN T HE LAST COUPLE YEARS. >nancy spires > > >[This message contained attachments] > > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 3 > Date: Mon, 17 Jun 2002 00:06:33 -0400 > >Subject: Re: Re: Bill and Aletta > >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 > > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 4 > Date: Mon, 17 Jun 2002 00:41:05 EDT > From: W489@... >Subject: Re: : Re: : Re: Vera >Bill T > >Would love to host a meeting in September. We are thinking of going to our >lake home at the Lake of The Ozrks in the Fall but could work-in a meeting >here; just let me know re: date. In the meantime, why don't you and Fred come >for a visit; we could include lunch. > > >[This message contained attachments] > > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 5 > Date: Mon, 17 Jun 2002 00:08:18 -0500 > >Subject: Re: LALouise/dementia update > >Louise >Hope you had a good day with sons and Jan got some smiles from all. Did >you also get the pretty day I sent? We have had 3 in a row. Something >is going to happen. > >The latest in Picks is about as far as the latest in MSA. They are >leaning toward more genetic, at least 50%. That's not what I wanted to >hear!! The diagnosis rate is going up. It is becoming easier to >distinguish between it and Alzheimer's now. One of the biggest things >is that they are really cautious about using Alzheimer's meds because it >seems to make things worse for most but not all. Imagine that. > >They other thing is that they are finding once FTD sets in there seems >to be an increased rate of other diseases setting in such as PD and ALS >type diseases. Wow, that should come as no surprise to you. They are >beginning to do a little more on these lines but many of the research >areas want to have the patients there to see so Mother as well as your >Jan are out in the cold. I wouldn't transport mother 15 miles much less >several hundred. > >I'll send new information on down to you but it is pretty slim for now. >Are you going to donate Jan's brain for research? Mother's is going to >Harvard. All paperwork is done. She would be tickled to death if she >understood that she has been accepted by Harvard. > >We have finally been able to regulate her meds so that I can go to visit >with her and she is glad to see me and able to visit. What she says is >gibberish but she smiles and hugs me. Something she hasn't done for >many years. The nursing home staff are just wonderful with her and she >seems happy to be there except for not being able to get out and walk. >They do take her outside when they can but can't turn her loose to walk >down the street. I still can't take her outside because she refuses to >come back in but she will go with the nurses. > >I'll send some web sites and info >Hope you have had some sleep > >Sally in KS >Where the wheat fields are waving golden grain > > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 6 > Date: Sun, 16 Jun 2002 23:56:53 -0500 > >Subject: Re: : Re: : Re: Vera >Bill T/ Vera > >Sorry for reading over your shoulders. >Whew. Vera. Take her up on the Lake of the Ozarks You will never forget >it. I love that part of the world. > >Barb > >-- > " Old age ain't no place for sissies. " -Bette - > > > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 7 > Date: Mon, 17 Jun 2002 07:07:40 +0200 > >Subject: Re: Hej Hans > > > Re: Reminder - MSA CHAT >> >> >> > I haven't been able to get onto MSA chat because >> they >> > keep telling me that I have tried too many times. >> > MSA chat said, I have to wait 24 hours and every >> time >> > I try to get on before the 24 hours is up they >> will >> > add time to my punishment. I thought that I had >> waited >> > 24 hours and I tried to sign on again and they >> said >> > because I didn't wait 24 hours they are adding >> more >> > time. What should I do. I thought it had been 24 >> hours >> > but they wouldn't let me on again. I do not think >> > that I can be there for the Sunday chat anyway so >> > there is no hurry. I have until Wednesday night >> so I >> > will wait till Wednesday to try to sign on and see >> > what happens?????????????????? Connie. >> > --- shydrager wrote: >> > > >> > > We would like to remind you of this upcoming >> event. >> > > >> > > MSA CHAT >> > > >> > > Date: Sunday, June 16, 2002 >> > > Time: 3:00PM GMT >> > > >> > > Date: Every Sunday >> > > >> > > Time: Join in anytime between 3PM Eastern and >> 5PM >> > > Eastern >> > > >> > > To join us you need chat software called >> Netscape >> > > Instant >> > > Messenger. >> > > You can download it here for free: >> > > >> > > http://home.netscape.com/aim/index.html >> > > >> > > Simply click on " Sign Up " and follow the >> > > instructions. >> > > >> > > After you have the software installed and >> running on >> > > your >> > > desktop simply click here to join us in the MSA >> > > Chatroom. >> > > >> > > http://accesswave.ca/~pbower/msachat.htm >> > > >> > > Click on " Join my Chatroom " >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > If you do not wish to belong to shydrager, you >> may >> > > unsubscribe by sending a blank email to >> > > >> > > shydrager-unsubscribe >> > > >> > > >> > > >> > > >> > > Quote Link to comment Share on other sites More sharing options...
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