[Jaye]

Here is part of my personal story, which I share with the intent of helping those who would like the info. It's only my experience.

Saw my neuro for an HOUR. He is one of the brightest and best and I'm a lucky gal with decent health insurance.

I found myself again challenged to offer my views on why I'm doing so well almost 8 1/2 years after diagnosis (with symptoms several years before that). One thing he pointed out is that I've always kept my meds very balanced, keeping myself neither too on nor too off, never shocking my brain if I can help it. I brought up a disagreement with a different neuro on the amount of Sinemet I should have, and this neuro said I had been right. I take Sinemet and three things to stretch it out: an agonist, Comtan, and experimental KW6002. I also take an antidepressant daily since 1999, which, besides the obvious, protects the brain from damage due to depression, isradipine for slightly elevated blood pressure, and lipitor for hereditary high cholesterol, plus a baby aspirin, a multivitamin, and folic acid on general principles.

So neuro says that not shocking the old melon may be why he can't find any cogwheeling on the right (left first affected) when I'm on and I almost walk normally 11 months after hip surgery. My cognition is improved. My posture is improving with exercise, and beside, the hip hurts if I don't stand "tall." On meds, I still feel Parkish, but others can't tell except for some dyskinesia. Exercise helps with that. My tremor breaks through occasionally and I feel like poop a lot of the time, but I have energy to do things now, since the hip surgery took care of most of my major stressor, pain.

So it's not just that I'm lucky, I'm also vigilant and, well, stubborn. I tell you all this so it may help you all. None of this going off to see what happens, or gulping extra med before a demanding event. Other factors about my life are indeed lucky, but much is under our control with the right information. I'm here to share all I can for what it's worth, and I usually receive more in return than I give.

Last thing the good neuro told me was it's possible I have a milder strain of the disease than most, as do many young onsets. Here's hoping.

Now watch me go on a huge downhill slide tomorrow for opening my big mouth.

Jaye

[Evon]

Thanks Jaye for sharing that with us. Lately I have felt like I am on a downhill slide. I was doing quite well up until a few months ago then everything went haywire. I am sure that stress has had something to do with it and I am wondering if menopause would also cause some changes. You mentioned being on an antidepressant since 1999, I have been on Paxil and then changed to Effexor due to side effects and am now trying Welbutrin which I find is not working well. Have you stayed on the same one, I am wondering if the change over is the cause. I was dx 4 years ago and had symptoms for 3 years before that. I take 4 Sinemet a day , 2 weeks ago my MDS added Sinemt CR at bedtime to relieve the dystonia at night and help me sleep, it helped the dystonia but didn't improve sleep. I take an agonist (Requip) which was reduced by 2 mgs. to 12 mgs. a day, my MDS is hoping it will reduce anxiety and restlessness. I haven't seen much difference since reducing to a lower dose. Perhaps it is the progression of the P.D. Trying to find a balance in meds hasn't been easy lately. I am hoping this is just a bleep in the progession and that I am not spiraling downward. Any suggestions are welcome.

[jeanb]

Jaye

How nice of you to share your story! It sounds like you are definitely doing some things right. And hopefully your PD is the slow progressing kind as well. Fingers crossed for you about that!

I'll add a little of my story now - I saw my neurologist last month, and she thinks I'm better now than I was 6 months ago when I saw her last. It may be due to my exercising much more - that's the big change in my routine. And of course I take isradipine - but I'm not sure the dose is high enough to make a difference. But I remain hopeful for that in the future.

[Jaye]

Oh yes, Evon, I've tried several. Zoloft was okay at first, but then it turned to darkness somehow--side effects that I no longer recall. Then there was Wellbutrin and maybe something else, and then Effexor for several years, which was still okay but I felt it was contributing to weight gain, and I think the doc who prescribed it thought it was less effective. About a year ago I went on Cymbalta, which helped with the pre-op pain and has shown very few side effects. I've been moody, though, and the cause seemed to be that I have immediate psychological effects when I go off, while I had been keeping myself slightly undermedicated all the time to avoid dyskinesia, and without the painkillers, which I no longer needed, my other drugs couldn't quite keep up with my symptoms. It was my neuropsychiatrist who suggested about a month ago that I try slightly smaller doses close together in the morning, and then less frequently in the afternoon. I now take the dopamine-related meds at roughly 6, 9, 12, 5, and 10, in doses of 3/4, 3/4, 1, 1, 1 25/100 tablets of Sinemet with Comtan, and with Requip 5 mg at 6, 2, and 10. This is working quite well for me right now. I've also stepped up the exercise from a slow period over the summer.

I think your articulate description of trying different things is typical. It's a constant balancing act. If anyone knew what these drugs actually do and/or how they do it, that would help. The important thing is to keep up the good work and keep trying things until you get the right one. Keeping a mood-and-med diary can help the doc see into your life beyond the 15 minutes usually allotted.

We do go downhill in slides, but there's a plateau that we reach where we can get used to things for a while.... but this isn't my day to think about those things. Best to see someone and have your meds scrambled again.

Jaye

[Jaye]

Yes, Jean, exercise does W O N D E R F U L things to the brain, doesn't it? I've never in my life enjoyed it as much as I do now.

Jaye

[jeanb]

I find for the first time in my life I actually LIKE exercising! that's saying something for a couch potato like me!

[BEMM]

How good to know that you are doing so well, Jaye. Wallow and celebrate, that's what the good times are for. Make the most of it.
It is so good to read a positive and happy post, and so encouraging to see that things can improve. We are not falling head first into the abyss, we are on a slide that can be slowed down.
I made a startling discovery: I increased my carb/lev. 25/100 from one and a half pill to two pills a day, and that little half pill extra gave me offs for the first time ever. So more sinemet is not always the answer, it can be the problem.
Thanks to Amantadine, and to very close attention to what pills I pop into my mouth and what each one of them does to me, I am also feeling really well again.
Today I baked breakfast muffins and apple cake with only a little help from my husband: he greased the pans......nasty job.
Willpower also helps.

birte

[pegleg]

I loved hearing your story. We all walk a different walk with this disease, appropriately tagged as the "Designer Disease." It's different for all of us.

Some of us have been round and round about PD and the depression link. Which came first? Did one cause the other?

Your brought out how taking care of ourselves can make a difference, and research is showing this. Exercise, diet, sleep, and maintaining a healthy mental status is what it's all about.

By the way - I scored about a "C" and sometimes an "F" in some of these areas!

Peg

[Judith]

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

[Howardh]

thread. Ditto to what you guys are saying. And for a 12 & a half year veteran of the disease who is brisk walk/jog 3x1 hour per week, plus 2x 45 minute resistence training with weights, combined with a caffeine/wheat free and near sugar free diet including supplementation from the ginseng thread, this body is being in the best condition it possibly can be leading up to and beyond a cure. Attitude is everything in my book.

keep on pumping gang your're doin good.

www.harbourfitness.com

GO HARD...... SCIENCE