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

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.

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.

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

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

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

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

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

Jaye you post here often and if I remember ocrrectly, you have mentioned you crochet. It's good to hear you are doing so well, and why! Keep it up!
My docs have also told me the symptoms I show are pretty mild, 4 years since diagnosis (with symptoms about 2 years prior to that).
I take carbi levo dopa 25/100 x4, detrol for bladder. No antidepressants yet. Exercise was helping so much, then I quit at the beginning of summer...lots of stuff going on. Am chomping at the bit to get back into it, after you stop for a hilwe, it's hard to go back.
One big thing for me is the meds; I am have been a horrible patient. Could never take them on time, would skip doses (or "forget" them) and felt physically, mentally and emotionally terrible. Not anymore...
And ditto every one on attitude...gotta keep a good one & try to hang around with other good ones, because a bad one can drag a person to the depths of despair.

For the folks who don't know, SherylJ and I created a website called "PDplan4life" that talks a lot about the things in this thread. Things like how exercise helps us, and about advocacy and the things we do to help us live with PD, and more.

This is a project that we both enjoy working on. And we hope that it offers hope and positive ideas about living with this disease.