At the risk of sounding like a pollyanna or that I think I have all the answers, I would like to add my two cents to Jaye's. It is only my experience and may not apply to others, but I have had great success, slowing and perhaps even reversing the downward slide I was on. Many of the ingredients for this success are similar to Jaye’s.

I was diagnosed 5 1/2 years ago, and also had symptoms for a couple years before that. Three years ago I couldn't walk to the mailbox at the end of my driveway and get back to the house without my husband giving me a ride on the lawn tractor. I could only do limited housework and never went outside to work in the garden. I had trouble getting out of a chair and my balance was terrible. Getting up from the floor was a major effort, sometimes requiring assistance. My tremor was a constant companion. I had a couple of major falls and sometimes had to use a cane to get around. Occasional dystonia of neck and shoulder was pretty severe.

You would not recognize me as the same person today. I am not implying that my PD is gone or inconsequential, but I am so much better that I can do many of the things I couldn’t do a few years ago. I can now do housework, go for a walk, pull weeds in the garden, and get up from the floor without pain, hesitation, or assistance. My tremor is still present but it is much milder and not noticeable to most people. One doctor even told me, “You don’t look parkinsonian.”

I attribute this success to some of the same things that Jaye mentioned. I take my sinemet religiously—always on time. I have an alarm that nags me every 10 minutes if I forget a pill. I am so lucky, only on sinemet 25/100 x 4 along with an antidepressant (low dose nortriptyline), one acetominophen with codeine at breakfast (rarely a 2nd one later in the day for back pain), enablex for bladder control, and meds for blood pressure, cholesterol, and osteoporosis. I have been on various other PD meds, but they were not my friends and, right now, the sinemet seems to be doing the job. But the point is that I try to keep a steady amount of it in my system. I don’t ever take an extra one or miss a pill.

I believe the biggest improvement came with exercise. I started a walking program because I needed to lose weight. I was walking every day and my legs got much stronger and balance improved. It was not easy, especially since I had a big fall on pavement and that slowed my progress. Now I don’t walk every day (although I would feel better if I did), but I am in a yoga class (Kripalu style, which includes gentle stretching, breathing, and balance poses—never pushing beyond my “edge”). I suck at the balance poses and wave to the rest of the class with my tremoring hand, but no one seems to mind and I always feel better afterwards. And even though I don’t walk every day, I do make a point of being as active as possible—walking whenever I can and not being afraid to push the vacuum cleaner or do physical chores (like scrubbing the floor of the horse shed).

The other major help is deep tissue massage. I have an excellent massage therapist who works on me for 3-4 hours every two weeks. She has straightened my curling toes, and worked out muscle spasms/rigidity from neck to toes and everywhere in between. I credit her with keeping me upright. I know that this option isn’t for everyone, but it has worked wonders with me.

Probably the last ingredient is attitude. I remain optimistic about my future and try not to cross too many bridges. I believe that I will be able to handle whatever comes. Maybe the whole thing works because of a placebo effect—I just believe that it will work, so it does. Like Jaye, I may also be lucky to have a mild case. But I believe that I have reversed a downward trend. My neuro practically applauded at my last visit and told me to keep doing what I am doing. I don’t know what the magic formula is, but I do know what works for me.

Whatever your situation, I hope that you find the formula that works for you--the right meds, the right combination of exercise, attitude, and therapies or treatments. In this designer illness, we have to take an individual approach to treatment too.

Judith