 |
 |
Thanks, Rick, for your kind words. David's reaction to leva/carbadopa has been fairly predictable. He used to get maximum benefits with minimum side effects. Now, the opposite is true. At this juncture, he takes one Stalevo and 1/2 of a .75 mg. Permax every 2 1/2 hours (We use a pill cutter to break the pills in half.), for a maximum of six Stalevos/day and four 1/2 Permax/day. It often seems that Permax is the most important drug in terms of his mental functioning. When he takes his medicine carefully---and we often have many misses, even with the timer---he usually can have a decent day. However, by 4:00 p.m., he's pretty tired, and the "sundown effect" can take hold of him, regardless of how well he's taken all his doses. I know that this doesn't exactly answer your question, but it's difficult to say when he's "on" and how long he stays that way. Without his meds, he can't think, can't walk, and the day is lost. With his meds, he can have good days and bad ones...but his symptoms don't appear to fluctuate from hour to hour. BTW, he's actually been on sinemet, or a variation of it, for 36 years, so it's not too difficult to see that he'd not get the best benefits of the meds. David is very reactive to medication, and hasn't always been able to take new ones that have appeared. E.g., he was on Eldepryl (spelling?), but didn't do well on it. Important info: I just spoke to David's nurse who ran a blind study for rasageline (Again, spelling?). David participated in this study. He received a placebo, and was later allowed to receive the actual meds in another study.... However, he couldn't fulfill the requirements of the 2nd study. So...I asked his nurse if he could possibly qualify for the use of rasageline even tho' it hasn't been approved by the FDA. The answer is "probably not"...but...here's the important part---she said that rasageline has several nasty side-effects, including orthostatic hypertension. She also said that it's being touted as almost a cure-all, but it's far from that. Just a word to the wise, because she's in a direct position to know. Too bad, because I had some high hopes, here. Bev ---- Rick McGirr <[log in to unmask]> wrote: > Hello, Beverly and David, and welcome. Yours is an incredible story. > First, let me commend you, Beverly, on your devotion to David, despite > the fact that most of your married life has been complicated by > David's illness. Not all of us are so lucky to have partners who take > their vows seriously. Next, this is the first time I've heard of > someone being on Levodopa for such an extended period. David, have > you had the usual difficulties associated with long-term use of > carbidopa-levidopa? Could you sketch the timeline of those > difficulties for us? Next, yes, I and several others here have been > exposed to a variety of chemicals in the past. In my case, it was > pesticides, as I waged the mother of all battles against the fleas in > my apartment, some 28 years ago. It appears certain that this is an > important factor in the development of Parkinson's, and your family's > experiences seem to support this. Next, let me say that you both must > be very brave and tough. Members here are in varying stages. We have > newly diagnosed, and we have long-standing members who have seen, and > been through, just about everything. This list is an excellent > resource for info, understanding, advice, and support, both for PWP's > and their caregivers. I hope we can be helpful to you, as you > continue to persevere against our common foe. Welcome, and all the > best to you in 2006. > > Enjoy winter! > Rick McGirr > Email: [log in to unmask] > > ----- Original Message ----- > From: "Beverly Bashe" <[log in to unmask]> > To: <[log in to unmask]> > Sent: Sunday, January 01, 2006 10:49 PM > Subject: Intro > > > > Hi, all. My name is Beverly Bashe, and I'm new to the list. I do > > not have Parkinson's Disease, but my husband, David, does. > > > > David has been ill at least 38 years...and we've been married for 40 > > years. He was not diagnosed until about 10 years ago, but has been > > on leva dopa for about 33 years. At this time, he's on Stalevo and > > Permax. > > > > Three years ago, David had brain stimulator surgery at New York > > Presbyterian Hospital after his ability to balance himself went down > > to near zero. Michael Kapplitt was his surgeon. Michael has been a > > special and treasured person in our lives. He's a fantastic > > surgeon, brilliant and passionate about his work, and is a > > compassionate physician and human being. In retrospect, I think > > that he worked with a neurologist in Toronto, perfecting the brain > > stimulator surgery before moving to NY. > > > > Although the surgery was successful, the disease continues its > > inexorable downward slide. David's mental profile prior to the > > surgery sent up some red flags as to the appropriateness of the > > operation, but, frankly, he had nowhere to go. Michael and I > > discussed the situation a couple of weeks prior to the operation. > > He stated that he didn't want to hurt David, but if he didn't have > > it, he'd be spending the rest of his life strapped in chairs. > > Yet...I'm not sure that the operation did him a favor: he was > > definitely damaged by the surgery, having lots of residual problems. > > His balance was restored, but that, too, is getting worse again due > > to the progression of the disease. > > > > David's neurologist, David Eidelberg, is in Manhasset, NY, and runs > > the Movement Disorders Clinic at North Shore Hospital. He works > > pretty closely with Michael Kaplitt, and was instrumental in David's > > recovery post surgery. Dr. Eidelberg believes that David has > > early-onset Parkinsons, brought on by the environmental toxins in > > the gas station he owned with his brother, Jerry. Jerry, btw, > > developed symptoms about 11 years ago, and died within 5 years. No > > one in this long-lived family has ever shown symptoms of movement > > disorders before David and Jerry. Now, however, a cousin has also > > been diagnosed, but he was a chemist, handling and breathing > > chemicals for 40 years. Hmmmmmm. > > > > We're looking for a new neurologist who might be located in Florida. > > We just moved from Long Island, NY, to Delray Beach, Florida. Dr. > > Eidelberg has recommended a colleague of his by the name of Carlos > > Singer at the University of Miami, but we haven't gotten in touch > > with him, yet. Does anyone know of him? Is there anyone else whom > > some of you might recommend, someone who's really involved > > exclusively with Parkinsons? > > > > Both David and I are looking forward to corresponding with this > > group. I do most of the communicating, because David doesn't have > > the coordination to type or use a mouse. However, he is directly > > involved with what I write. We'd both like to know if anyone on > > this list has developed Parkinsons Disease after working with or > > having been in an atmosphere of chemicals. > > > > It will be a pleasure getting to know you. > > > > Bev Bashe > > > > ---------------------------------------------------------------------- > > 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