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bjenczyk

Pace of progression

7 posts in this topic

Dr. Orkin,

 

I realize that the pace of progression with Parkinson's is very individualized. That said, I am a 48-year-old man who was diagnosed in March 2012. I started off with a low dose of Mirapex and that seem to address most of my symptoms. Now that I am 10 months out from my diagnosis I noticed that my symptoms have definitely progressed. My neurologist has put me on Sinemet, and although that has helped I can still feel increased rigidity on my symptomatic side.

 

I'm curious if there is any way to gauge the speed of progression. Is it possible that you go through a period of progression and then plateau? Or is progression generally fairly consistent in its pace? I have a quarterly appointment with my neurologist this week, but I find this forum to be a very good backstop of information and I want to get your opinion. I am seeing in MDS, but that is an annual visit and I will not be back there until next fall.

 

Another factor that might be affecting my symptoms is that I am a CPA, and this time of year is obviously rather stressful. I deal with the stress well, but could that be a factor in my perception of progression?

 

I'm sure all Parkinson's patients are very anxious about their rate of progression. The more I can find out about what to expect, the happier I will be.

 

Thanks for all you do. This resource is tremendously valuable.

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The rates of PD progression are highly different among patients. NPF is running the largest PD study every attempted (longitudinal)- The Parkinson Outcome Project. We will hopefully have answers from this study. Stress definitely makes symptoms worse.

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Dr. Okun,

 

I look forward to the results of that study. I, too, am curious about progression. I don't want to over react, but I find myself obsessed with making sure that my affairs are in order even though I have been diagnosed for just 1-1/2 years with symptoms for about 5 years. I know that I won't die from this disease, but I'm worried about how much independence I'll have. Is there any reliable data already available ?

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I'm also interested in the rate of progression. I looked into the study and found the longest duration was 48 years! However, beyond that there's little information about rate of progression. Doctor, do you know if any kind of a survey of people with Parkinson's has been done, perhaps using the Hoehn and Yahr Scale, to at least get a general idea of progression rates? Thank you very much.

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You may look in the old literature for studies on disease progression (tremor dominant versus akinetic rigid) by using pubmed.org

 

PD is not one disease. It is a syndrome, with symptoms that look similar in a group of similar looking patients. This means there will likely be wide variability until we get subtyping data from better studies.

 

One suggestion I would offer is to consider with your doctor whether a SSRI (anti-depressant) drug would help you. The reason I bring this up is that many studies (including NPFs) have shown that undiagnosed and untreated depressive symptoms can impact quality of life in PD. Some patients will ruminate over certain things and will not be able to let them go long enough to enjoy their lives. Not sure if this is appropriate or would be helpful, but worth some thought as I would hate for you to worry and ruminate and miss some great living. Keep us posted.

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It actually doesn't matter, as long as the dose is adjusted appropriately especially after 6-8 weeks of therapy. They all work very well, and sometimes your doc will change or adjust based on side effects.

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