Guest guest Posted September 30, 2002 Report Share Posted September 30, 2002 Thanks Carol I think that was very good advice. We're seeing Mark's neuro next week and I'm planning on making a list. He feels fine but I thought he felt warm tonight so I took his temp and it's 99,,usually 97. I was wondering if Tylonol was better than ibuprofin. I hope it's not a UTI. He's never had one but his bladder just doesn't seem to empty anymore. I'm going to try and find the strips everyone talks about tomorrow. Gert Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2002 Report Share Posted September 30, 2002 Hi gang, Rob has had a couple of tough weeks and last week we saw his neurologist (Dr. Freeman, whom some of you met at the conference in Boston). While some of Rob's difficulty is from the progression of the disease, Dr. Freeman observed that the Ditropan he is taking for bladder control issues may be amplifying the effects of the sinamet and amantadine, which is causing him to feel more "brain fog" and to have mild hallucinations. We're in the process of cutting back the sinamet and will be switching back to detrol and adding DDAVP (a medication used to help children with bed wetting problems) to see if we can reduce the problems. I'm passing this all along because I think Dr. Freeman is doing a great job in getting us to focus on what Rob's biggest problems are and helping us solve them. Neither he nor we think we can cure this thing, but we have a common goal of working to manage the symptoms as best we can and to maximize Rob's enjoyment of life. I urge you all to prepare for your doctor's appointments by making a list of the symptoms you are experiencing and prioritizing them in order of severity and in terms of which have the most impact on your enjoyment of life. Carol & Rob Lexington, MA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2002 Report Share Posted September 30, 2002 > Carol Langer wrote: > > Hi gang, > > Rob has had a couple of tough weeks and last week we saw his > neurologist (Dr. Freeman, whom some of you met at the conference in > Boston). While some of Rob's difficulty is from the progression of > the disease, Dr. Freeman observed that the Ditropan he is taking for > bladder control issues may be amplifying the effects of the sinamet > and amantadine, which is causing him to feel more " brain fog " and to > have mild hallucinations. We're in the process of cutting back the > sinamet and will be switching back to detrol and adding DDAVP (a > medication used to help children with bed wetting problems) to see if > we can reduce the problems. I HAVE READ OTHER CAREGIVERS ACCOUNTS OF THE MILD HALLUCINATIONS AND THEY MENTIONS THE SINEMET CUT BACK TOO. I CAN'T TAKE MY URINE MED WITH THE SINEMET AND COMTAN. I AM NOT MYSELF WHEN I DO. I THOUGHT IT WAS ME UNTIL I SAW OTHERS HAVING THIS SIMILAR PROBLEM. MY SINEMET LASTS ABOUT 2HRS. I TAKE THE URINE MED 4 HOURS AFTER MY 7 PM DOSE OF SINEMET/COMTAN. MY SINEMET IS 1100 MG. A DAY. IT IS ULTRA HIGH, BUT IT HELPS. THAT IS MY LIMIT. WHAT IS THIS DDAVP STUFF?? I HOPE U GUYS HAVE A BETTER DAY TODAY AND U EACH HAVE A LITTLE SMILE AT SOME MOMENT OF THE DAY:) NANCY M. > > I'm passing this all along because I think Dr. Freeman is doing a > great job in getting us to focus on what Rob's biggest problems are > and helping us solve them. Neither he nor we think we can cure this > thing, but we have a common goal of working to manage the symptoms as > best we can and to maximize Rob's enjoyment of life. I urge you all > to prepare for your doctor's appointments by making a list of the > symptoms you are experiencing and prioritizing them in order of > severity and in terms of which have the most impact on your enjoyment > of life. > > Carol & Rob > Lexington, MA > > 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...
Guest guest Posted September 30, 2002 Report Share Posted September 30, 2002 I USE MOTRIN OR ALEVE MORE THAN EVERY 8-12 HOURS THE FIRST FEW DAYS. HELPS ALOT. IT WORKS BETTER THAN THE TYLENOL FOR ME. I DON'T KNOW HOW IT WILL AFFECT UR HUSBAND. I DON'T DO WELL WITH CODEINE AND THE TYLENOL GIVES ME MORE OF A 'STUFFY, DULL HEAD PRESSURE. SOMETIMES MY HUSBAND OR THE AIDE PUTS A COOL WASH RAG ON MY ANKLES, FOREHEAD AND WRISTS. IT COOLS MY TEMP FAST. I HATE THE UTI'S BECAUSE I START HAVING REALLY BAD PAIN. NANCY M. GFKN3790@... wrote: > > Thanks Carol I think that was very good advice. We're seeing Mark's > neuro next week and I'm planning on making a list. He feels fine but > I thought he felt warm tonight so I took his temp and it's 99,,usually > 97. I was wondering if Tylonol was better than ibuprofin. I hope > it's not a UTI. He's never had one but his bladder just doesn't seem > to empty anymore. I'm going to try and find the strips everyone talks > about tomorrow. > Gert > 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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