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Jamie has had PD for 27 years. He was diagnosed at 40. Jamie's tremor is almost completely gone. I don't know if it is because he has reached a different stage in his disease or if it is because of the continued use of Mirapex. That drug stopped Jamie's tremor cold - it was almost a miracle. I'm sorry to learn that Ken has tried about everything that could possibly work for tremor. You have my sympathy. --- God bless Mary Ann (CG Jamie 67/27 with PD) www.bentwillowfarm.org Subject: Re: Weight Loss > Mary Ann, > Ken was on Inderal for a couple of years back when his essential tremor > was > diagnosed in the late 1980s. He took Inderal again in the early 1990s; it > stopped working, he tried virtually every other beta-blocker and > anti-cholingergic > drug out there for the ET, eventually getting (in 1998) significant relief > from amantadine, although by that time, it was getting awfully difficult > to > separate the ET from Parkinsons. Amantadine stopped working after a > couple > of years. He does have extremely severe ET and early-onset rapidly > progressing Parkinsons (along with his other medical problems). Was Jamie > 27when diagnosed with PD or has he had it for 27 years? > > Annette, cg Ken 55/49/44-42 with PD (ET diagnosed age 36 -- some of the > tremor may have been early PD) > > On 8/1/07, Mary Ann Ryan <[log in to unmask]> wrote: >> >> Annette, Ken certainly has quite a medical history. I'm wondering if >> Inderal, a beta blocker, might help his tremor? This is a cardiac drug >> that has had a significant effect on essential tremor. >> ------- >> God bless >> Mary Ann (CG Jamie 67/27 with PD) >> www.bentwillowfarm.org >> > Before starting sinemet, Ken was on amantadine and then Requip (another >> > dopamine agonist)-- eventually taking a very high dose of requip >> > (15mg/day). He had a very unsuccessful trial of Mirapex -- it did not >> > work >> > at all for his tremors and he had a number of bad side effects. He >> > eventually had to quit Requip and the other dopamine agonists >> because: 1) >> > they had stopped doing much of anything for his tremors; 2) >> > obsessive/compulsive behaviors were getting to be a real problem; 3) he >> > had >> > horrible problems with swollen feet. I am sure Parkinson's factors >> into >> > his depression, but he is also bipolar (manic-depressive), which was >> > pre-existing before the Parkinson's symptoms or diagnosis. As far as >> the >> > tremors, his neurologist thinks he would be a good candidate for DBS >> > but >> > there are problems related to 1) money -- we have poor health coverage >> and >> > low income; 2) Ken's history of bipolar disorder and the risk that DBS >> > would >> > stimulate mania and/or depression; and 3) the fact that he is very, >> > very >> > frightened of the idea of DBS. He does also still take Topamax (it is >> an >> > anti-epileptic drug) for his essential tremor but it provides little >> > benefit >> > anymore. He may try another dopamine agonist as an addition to the >> > sinemet >> > sometime in the near future. >> > >> > Thanks, however, for your thoughts and suggestions. >> > >> > Annette >> > On 7/30/07, Mary Ann Ryan <[log in to unmask]> wrote: >> >> >> >> Annette, Mirapex helped my husband get rid of his tremors. It also >> >> had >> a >> >> major impact on his depression. It can cause psychosis in high >> >> doses - >> >> but >> >> has been very helpful in riding him of those terrible tremors. >> >> ---------- >> >> God bless >> >> Mary Ann (CG Jamie 67/27 with PD) >> >> www.bentwillowfarm.org >> >> >> >> > My husband has also experienced significant weight loss and a >> >> newly-gained >> >> > capacity to NOT put on weight since the worsening of his Parkinson's >> >> > symptoms several years ago. He currently takes 5 sinemet 25/100 + 5 >> >> > sinemet >> >> > 50/200 daily. He has severe tremors (bilateral -- arms, hands, >> >> legs/feet >> >> > + >> >> > head) and also has essential tremor (has action, intention and >> resting >> >> > tremors) and he has lost the most weight at the time when his >> >> > tremors >> >> have >> >> > been the worst -- I think both because of calories burned through >> >> > the >> >> > constant shaking and because of the fact that bad tremors make it >> >> > difficult >> >> > for him to eat. L-dopa related nausea/loss of appetite doesn't >> >> help. He >> >> > also suffers from periodic episodes of severe depression (which are >> >> > sometimes associated with total loss of appetite and other times >> >> > associated >> >> > with an uncontrollable urge to eat tons of ice cream). >> >> > >> >> > Annette, wife & caregiver of Ken >> >> > >> >> > On 7/16/07, Nick <[log in to unmask]> wrote: >> >> >> >> >> >> My wife is a 15 year Parkie. She started losing weight about a year >> >> ago, >> >> >> and has gone from 105 to 85. She has a good appetite, eats a >> balanced >> >> >> diet. She is still losing weight. She takes amantidine , 2tabs >> >> >> twice >> a >> >> >> day, and 2 sinemet 25/100 before bedtime. Has this happened to any >> >> other >> >> >> Parkies? Is this directly related to her Parkinson's disease? >> >> >> Please >> >> >> help. >> >> >> >> >> >> Nick >> >> >> husband & caregiver >> >> >> >> >> >> >> >> >> >> ---------------------------------------------------------------------- >> >> >> To sign-off Parkinsn send a message to: mailto: >> >> >> [log in to unmask] >> >> >> In the body of the message put: signoff parkinsn >> >> >> >> >> > >> >> > >> ---------------------------------------------------------------------- >> >> > To sign-off Parkinsn send a message to: >> >> > mailto:[log in to unmask] >> >> > In the body of the message put: signoff parkinsn >> >> >> >> ---------------------------------------------------------------------- >> >> To sign-off Parkinsn send a message to: mailto: >> >> [log in to unmask] >> >> In the body of the message put: signoff parkinsn >> >> >> > >> > ---------------------------------------------------------------------- >> > To sign-off Parkinsn send a message to: >> > mailto:[log in to unmask] >> > In the body of the message put: signoff parkinsn >> >> ---------------------------------------------------------------------- >> To sign-off Parkinsn send a message to: mailto: >> [log in to unmask] >> In the body of the message put: signoff parkinsn >> > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn