At the Wisconsin Parkinsin Symposium on June 12, 2009, the first speaker, Dr Nausieda, MD, made a very interesting statement.

If I remember correctly, he said that after 10 years of Parkinson's, there is no more disease progression. When he didn't say (and I didn't get a chance to ask) was:

- when does he start counting the years?

-- time of diagnosis? - this would vary widely
-- time when you first lose sense of smell or stop arm swing? (I lost sense of smell 20+ years ago & stopped arm swing 15+ years ago)
-- when you get that first tremor? (but not everyone has tremor)

I'd never heard this before and plan to ask my MDS what she thinks.

Has anyone else ever heard this?

We are told that we don't exhibit symptoms until 80% of the cells in the SN are lost. We are also told that this is confirmed upon autopsy. It has been seventeen years since my first tremor. Something doesn't add up.

it doesnt make sense to me!

I have had PD for 29 years, the first 17 there was little progression then it progressed rapidly.

Anything happen at Year 17 for you? Stressors, drugs, etc?

Did progression accelerate and then slow again? I mean, 12 years is a long time...

(before exhibiting symptoms) always confused me. Perhaps other areas of the brain come into play at this point ?? How does this map to other similar diseases such as diabetes ??

Great question !!

Neil.

I will be at 10 years post dx in January. I progressed slowly until the last year, and now it's falling off the cliff.

Found Dr. Nausieda web site and asked him to explain. Will post his responce if received.

Interesting. So is he saying that by year 10 all the brain cells that are going to die have died?

Vicky, I look forward to you post of his response.

Yes, very interesting. I think that we all have this expectation of an endlessly plummeting line on our graphs, to one degree or another, and so far inevitable. I really believe that that expectation plays a huge part in how we view our bodies and what happens to them. After all, if in studies patients do better with pills that they are told cost $2.50 a pill than the patients who are given the same pills and told they cost ten cents a pill - this is a true study- our ideation about our conditions has got to have an enormous effect.

Yesterday an old friend of mine whom I see rarely told me that it seemed to him as if I were surfing my condition. I thought that was a really more accurate description, and I wanted to present it to you all because I think it's probably true for many....and if we looked at it that way, that alone might generate a different sense of the direction of our health.