[oyster]

hi, i'm wondering how many others here aren't taking any pharma drugs for there pd. or if you are, did you hold off for any length of time and why did you decide to start taking the drug when you did?

i was dx 10/06 and have been searching and researching pd and treatments since then. i take a bunch of suppliments, eat organicly grown food, and am trying, with a bit of suuccess, to exercise. i'm self employed and its ok if i'm a bit slow or stiff or shakey. i dont NEED symptom relief yet so thats why i avent started taking any drug yet.

i would love any feedback .
oh yeah, i' 46 yr man.

[chasmo]

as long as alternative treatments help, by all means us them. Exercise is the best thing you can do in my opinion. When you finally throw in the towel, add sinemet LAST, as it has a finite life span without side effects, primarily dyskinesia. (10 years on average)

good luck to you

Charlie, 57 DX'ed with PD, age 40, in 1990. DBS-STN in 2002

[stevem53]

I was dx May 2004..I was on meds Nov 2004..(Mirapex)..Added Sinamet March 2005..Symptomatic about 2 yrs prior to dx

[Dottie]

Oyster -

You will know when the time is right for you to start meds - your body will tell you. Exercise and stay as active as possible.

I was given sinemet twenty-seven years ago when I was diagnosed. I'm one of the lucky ones - I've had very slow progression and I've taken sinemet all these years. When you start taking pd meds try to take the smallest amount that will give you relief.

Good luck to you

[wendy s]

When I was first diagnosed, the MDS said "I know you won't be happy without treatment, so here's some Permax". I was a bit too stunned to ask enough questions, but I wish that I hadn't started medication right away. That was five years ago. I LOVE sinement - it gives me my easy fluid movement back. I'm just hoping that it's true that fish oils will prevent/decrease dyskinesia! But I'm not going to regret going on it 2 1/2 years ago, I have a lot of normal times now and I'm trying to make the very best of them.

[KC Tower]

Since DX on New Years eve 2002/3 I have gone the almost 4.5 years with nothing other than CoQ10 and increased exercise - mainly treadmill running.

While there is progression it is still not the point where I would accept any side effects in order to recieve the benefit of PD drugs. It is however getting closer to that time but not soon. Others might find an occasional tremor embarassing but not me :-)

I have recently started on the supplement Dopavite and will see how that goes - feels good so far.

Ken

[Maureen]

My husband, Rich, was diagnosed in summer of '05. But there were things that weren't right before that, just can't be sure anymore of what and where. I brought him to a medical doctor in NYC who works out of Columbia Presbyterian. She is also versed in Ayurvedic medicine. I really liked her and she was truly committed to helping Rich. She recommended fish oil, magnesium, brammi (not sure I'm spelling this one right) & Ashwaganda (that one either). She showed him some exercises to do for balance, etc. Rich was in such a bad place then and he still is, that it didn't matter what anyone suggested, he was not such a willing participant. Her feeling was that it was possible to restore balance and harmony into his body and try to eliminate some of the drugs western medicine uses. She was not advocating for or against western medicine, but thought she could really help him thru the Ayurvedic process. She also spoke about Rich to colleagues and wanted him to meet with an Ayurvedic doctor who only practiced that type of medicine. He wouldn't go. She sent me the Brammi for him to try. That is supposed to increase you alertness. However, Rich was too far gone psychologically at this point so he didn't take it. He was started on Mirapex at first by one doctor and another doctor removed it saying it was making his paranoia worse. I don't think it made any difference. He was already paranoid. The psychiatrist put him on Abilify and while I know it's not good for PWP to be on that type of drug, I do believe that did help with a lot of the paranoia. It is for paranoia schizophrenia. Right now he is on Sinimet 2x/day, next week going to 3x. The neurologist we see now believes Rich is clearly undermedicated. So far I don't see much change with the increase in the Sinimet. I am hoping for the best.
You don't want to jump on the Sinmet bandwagon too soon; however, it seems to be the rescue drug some people need before others do.

Maureen

[JACKMANA]

Hi Oyster,
I tried to manage my PD symptoms using alternative treatments & therapies for 2 yrs after dx with loads of support from my UK med team. I took glucosamine & chondroitin, bromelaine,B complex, CoQ10, vitamin E & Selenium. I practised Yoga, hydrotherapy,swimming, physio & meditation. At first it seemed OK but I gradually became less & less mobile, had some bad falls, walking deteriorated etc. After starting ropinirole my symptoms eased rapidly. I still use some alternatives: 5 elements acupuncture & Yoga. I swim regularly, do hydro once a week& do balancing exercises on my Pilates cushion. Striking the balnce that's right for you seems to be the key as we are all different.