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Well, it depends. The usual PD caveat about the variations. Carline, the PWP really does not respond to Sinemet and the Agonists etc. I largely give the meds to her on faith, maybe, just maybe she is a little less stiff. Sometimes I forget, it does not seem to make a difference. K. F. cg Carline Maureen Potts wrote: > Do not ever, and I mean ever, go off your medications without telling > your doctor. You can develop what they call Neuroleptic Malignant > Syndrome, where your blood pressure goes sky high, you pass out, and > worse. Some die. Drugs for Parkinsons are pretty strong stuff. You > are taking your life in your hands by not being more disciplied about > your medications. You are tempted to phase out the drugs because you > feel better. But it is the drugs that are making you feel better. > Trust me, the day will come when you will be infinitely grateful for > those drugs. > > My brother bought me one of those big plastic pill boxes with > compartments for every day of the week and for a daily schedule. It > helped me remember and to take my drugs on time. You have to commit > to counting and sorting for an hour or so a week. It is well worth it. > > Please dont stop your meds without medical advice. Just remember, > Neuroleptic Malignant Syndrome. Sounds awful, and it is. > > Maureen Thompson (I have been around, just quiet) > > > > ----- Original Message ----- From: "Murray Kastner" <[log in to unmask]> > To: <[log in to unmask]> > Sent: Saturday, January 10, 2009 10:24 AM > Subject: Re: question re dosage > > >> I am afraid I am the laggard of the group and the spacing of my >> dosages has been all over the clock. I have been prescribed 25/100 >> Sinemet three times a day along with 75 mg Mirapex and 5 mg >> Selegilene. I also take Flomax CR (1x Day)and Novo oxybutnin (1x >> day). 1 mg Folic Acid, calcium 2x daily. i am very erratic in >> taking the meds, and try to keep to three times a day but no fixed >> times. And I usually forget them altogether one to three times a week. >> >> I am sorely tempted to give up the meds completely, or to phase them >> out. I think I have read that there are cases where the meds >> contribute to the symptoms rather than alleviate them. I also have >> osteoporosis for which I have just completed an 18-month program >> with Eli Lilly's new drug, Forteo wherein I injected myself every >> morning. This past week I took a bone-density scan and Wednesday I >> am hoping to get the results, expecting 20-25% increase in density. >> This may allow for spinal surgery. which I am not too crazy about. >> >> My worst symptoms are camptocormia which means I cannot straighten >> myself when standing or walking. I can lay down perfectly straight >> and semis-straight when sitting. But the camptocormia has brought on >> shortness of breath, especially if I walk without a walker. It has >> been suggested that my bent-over posture has been crushing my lungs >> and so I also now have a 'puffer' 3x a day. >> >> I am growing weary and am tempted to give up all the meds and see >> what happens. Before I do that I will enquire as to the consequences. >> Fr'instance: can the PD and accompanying symptoms get worse with no >> returning to the meds to regain the balance I have now? >> >> I will discuss this with my neuro at my next visit -- scheduled >> every 4-5 months. since 1998 the only deterioration I have >> experienced is the damned camptocormia, apparently a rare condition >> which my neuro (one of two movement disorder specialists in >> Montreal) has seen only in 3-4 others. He feels it may have been >> triggered by a fall I took a couple of years ago which crushed 1-2 >> vertebrae when I landed on my coccyx. >> >> Phew! Thank you for bearing with this. I have probably left out even >> more meds, like the anti-depression pills (150 mg) bupropion SR. >> >> Every once in a while I wonder whether I really have PD or whether >> it is something with similar symptoms. >> >> Anyway I think I have rambled on enough and will appreciate input >> from anyone in a similar situation. >> >> Murray >> >> Ray, I received the pins and they are already being displayed all >> over Montreal. Thanks! >> >> >> >> On 6-Jan-09, at 6:33 PM, rayilynlee wrote: >> >>> I recently got some carbo/levo from my neuro to try once more. >>> When I first tried it it helped but never again even tho I took it >>> for a year. He gave me 25/100 3 times a day and I've forgotten how >>> you space the dosages. Do you take it at night or just daytime? >>> I've forgotten. in 2003 I had DBS and tried Comtan and Stalevo >>> afterwards but it didn't help. >>> >>> >>> Ray >> >> ---------------------------------------------------------------------- >> 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