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06-17-2009, 07:04 AM | #1 | |||
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Senior Member
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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?
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Jean B This isn't the life I wished for, but it is the life I have. So I'm doing my best. |
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06-17-2009, 08:51 AM | #2 | |||
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In Remembrance
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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.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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06-17-2009, 10:16 AM | #3 | |||
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Senior Member
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it doesnt make sense to me!
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Jean B This isn't the life I wished for, but it is the life I have. So I'm doing my best. |
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06-17-2009, 02:59 PM | #4 | |||
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Junior Member
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I have had PD for 29 years, the first 17 there was little progression then it progressed rapidly.
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. later......DB |
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06-17-2009, 03:53 PM | #5 | |||
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In Remembrance
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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...
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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06-17-2009, 06:21 PM | #6 | ||
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Member
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(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. |
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06-30-2009, 03:38 PM | #7 | ||
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Junior Member
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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.
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. A day-to-day record of my life. . |
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06-30-2009, 10:50 PM | #8 | |||
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Member aka Dianna Wood
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Quote:
Found Dr. Nausieda web site and asked him to explain. Will post his responce if received. |
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07-01-2009, 12:44 AM | #9 | |||
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Magnate
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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.
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You're alive. Do something. The directive in life, the moral imperative was so uncomplicated. It could be expressed in single words, not complete sentences. It sounded like this: Look. Listen. Choose. Act. ~~Barbara Hall I long to accomplish a great and noble tasks, but it is my chief duty to accomplish humble tasks as though they were great and noble. The world is moved along, not only by the mighty shoves of its heroes, but also by the aggregate of the tiny pushes of each honest worker. ~~Helen Keller |
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07-01-2009, 08:27 AM | #10 | ||
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Member
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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. |
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