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Slow Progression

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Dr. Okun,

 

Knowing we are all snowflakes when it comes to PD how slow is slow when it comes to progression?

 

Can it be that a PWP can go three even five years with no progression on symptoms ? Keeping with just a mild tremor, rigidity and slowness.

 

Would you consider it rare or average? I know the PWP would consider it awesome!

 

How slow is slow?

 

Thank you

Discovery

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Some cases do progress very slowly and like you describe.  When I see slow or no progression I usually check a DAT scan to confirm the suspected diagnosis of Parkinson's disease.

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Thank you for your reply!

 

So if the slow progression or no progression was in play what other Neurological Issue (s) would you suspect?

 

Are there other diseases that run the same course showing mild tremor, mild slowness and mild rigidity?

 

Discovery

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With this in mind, when the progression IS slow, and Parkinson's IS confirmed, are there any studies being done or any interest in the WHY? It could be something the patient is doing, it could be in the bloodwork, food, drugs, etc. One would think that the powers that be would be interested in what might be affecting PD progression in those that are going slowly to see if there is any common denominator?

 

In MY case, I seem to be progressing somewhat slowly (knock on wood), but I certainly can't guess WHY. I am taking Azilect, for what that's worth, as well as sinemet. Other than that, I am living my life to it's fullest, and acting as if I don't even have PD. But it WOULD be interesting to be part of a study group, giving them my daily particulars, and seeing if, collectively, there is any relevance....

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In my case, I was diagnosed in august 2012 with a possitive DatScan. I,m taking pramipexol extended reléase 1,05 mg one pill/day and my symptoms are just a mild tremor in right arm and leg and very slight rigidity and slowness, not interfering with my daily routines. I imagine it can be considered as slow progression and I cross fingers!!!

 

Best regards from Spain!!

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Thanks for the questions.  Not sure anyone has the answers.  The NPF Parkinson Outcome Project is looking at why different phenotypes progress at different rates....still unknown, but PD is probably not one disease.

 

If you have no progression or very slow progression a DaTscan (as you did) can be helpful.

 

Stay tuned for more research.

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Thank you for your reply!

 

I'm wondering if you have an answer to my question below?

 

So if the slow progression or no progression was in play what other Neurological Issue (s) would you suspect if not Parkinson's?

 

Are there other diseases that run the same course showing mild tremor, mild slowness and mild rigidity?

 

Discovery

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Some other movement disorders such as tremor, dystonia, and also other medical illnesses with a tremor component (or movement component)....it is important to see a movement disorders doctor.  Occasionally the symptoms can also be stress or another psychological issue and may be completely treatable!

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Dr. Okun,

"Slow progression" seems so subjective.... Can you explain how you might "measure" or determine that?

Thanks,

Mary

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I see patients usually every six months and do a detailed examination and document the unified parkinson's disease rating scale.  If over the course of years I see no progression or slow progression with a very low score on this scale, I might question the diagnosis of Parkinson's disease and seek a DAT scan.  We follow thousands of Parkinson's patients and I want to stress that we do this rarely and not routinely.

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Since we're on the subject of "slow" progression of Parkinson's disease......has there been any new discoveries on "How to slow" Parkinson's disease?

I am aware of exercise but any new meds set to hit the market in the near future?

Thanks,

Michelle

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There are many therapies being tested.  I have reviewed most of them in the 10 breakthrough therapies book.  Many people are looking at vaccines, cancer drugs, and anti-malaria drugs.  We have a great deal of hope.  The trials open for enrollment are at clinical trials.gov.

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Dr. Okun -

 

Referring to your mention of symptoms occasionally being from stress or psychological reasons; If this were the case could these symptoms (especially tremor) be only one sided? 

 

Thank You.

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I don't know how typical my husband's progression has been. Medicated on sinemet, he functioned quite normally for nine years or so after diagnosis. He did have symptoms for about three years before diagnosis and would have likely been diagnosed a couple of years earlier by a MDS or neurologist. At about nine years, the decline began, both mentally and physically. Currently, at nineteen years, his Parkinson's disability is profound. Does slow progression mean that at nineteen years, he would still be quite functional, mentally and physically? If so, how common would that be?

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Slow progression is relative to each case.  If you get 9-10 very good years that is on the slower side.

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Isn't PD suppose to be a slow moving disease and those who quickly deteriorate within the first 5 or so years after diagnoses are the exception?  I suppose this is where the everyone is different part comes in right?

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Parkinson is not likely one disease; it is many diseases with similar manifestations....hence there are different progression patterns.

 

Hope that makes sense.  

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Sorry, it doesn't make sense to me...

 

Could you please elaborate on your above answer?

 

Thank you, as always you're our Rock Star!

 

Discovery

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Not all Parkinson's disease is the same.  About 10% of people have a genetic form and 90% it is unknown cause.  The symptoms and signs vary greatly from patient to patient as does the progression.  They say if you have met one Parkinson patient, you have met one Parkinson's patient.

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Is it a coincidence that a lot of people I've talked to that has PD have told me that their symptoms started after a big stress in their life or do you think that might have something to do with it?  Maybe it shows its ugly head when a person is at their weakest point much like people catching colds when their immune system is low.

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Dr Okun,

 

Below is a statement you made on this thread March 7, 2016.

 

"Slow progression is relative to each case. If you get 9-10 very good years that is on the slower side."

 

What constitutes "very good years"? Is it low doses of meds? No other symptoms other then tremor or others but very mild?

 

I'm courius as to how a Doctor of your high standards gauge "very good and slower side."

 

If one gets 9 - 10 years do you think another 10 years could follow with manageable symptoms? Or will all heck break loose to catch up?

 

What is your experience?

 

Thanks again !!

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Dr. Okun,

 

you mentioned above that 9-10 years is on the slower side for PD progression. I know all Parkinson's patients are different, but I was wondering if as a newly diagnosed 27-year-old, should I be keeping in mind that I may only get 9-10 years of being responsive to medicine, or 9-10 good years? I guess I'm just wondering what I can expect for the future--can hope/plan to live a fairly normal life for the next 10 years, or hopefully 20+ years?

thanks,

 

-s

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