Parkinson's Disease Tulip


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Old 11-16-2015, 10:21 AM #11
Niggs Niggs is offline
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Quote:
Originally Posted by johnt View Post
An update on PDMeasure. It's still chugging away:
135 registrations;
70 medication responses;
780 tap tests taken.

Latest results from my own data are:

Attachment 9265

Attachment 9266

My side-to-side tap test results are gradually improving. I put this down to long-term learning. This raises an interesting question: can you beat Parkinson's, if only locally, by exercising based on making rapid, repetitive movements?

John
Reading this John I immediately thought of the recent post regarding boxing as a therapy which also involves rapid repetitive movements.

Nigel
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Old 11-21-2015, 02:56 AM #12
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Default Can you beat PD by exercising

using repetitive movements, I believe the answer is yes. I believe you can force the brain to adapt and create new pathways by repetition.

I believe this applies more for younger rather than older PWP and is the route of the different types of PD suffered by younger and older PWP.

I myself recently completed "Insanity". This is a very hard exercise program, lots of repetitive movements, I was improving every day.

Glad someone raised this point, I will speak to my Neuro soon and ask his opinion.

Neil.
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Old 04-28-2016, 10:05 PM #13
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I continue to take the tests reported above.

The graph below shows the tap test scores for the 89 tests done by me at least 10 hours after the last medication was taken. This time should be sufficient to eliminate most of the "noise" caused by the difference, from test to test, of the time since I last took my drugs.

timeSinceDXgt10h.png
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Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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Old 10-14-2016, 07:12 AM #14
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The results described in this thread relies on measuring Parkinson's using a computer keyboard. Giancardo et al. [1] have taken the work further, making it more accurate. Their system "measures the key hold times (the time required to press and release a key) during the normal use of a computer without any change in hardware and converts it to a PD motor index ... This new approach discriminated early PD groups from controls with an AUC = 0.81 (n = 42/43; mean age = 59.0/60.1; women = 43%/60%;PD/controls). The performance was comparable or better than two other quantitative motor performance tests used clinically: alternating finger tapping (AUC = 0.75) and single key tapping (AUC = 0.61)."

Their "alternating finger tapping test" is very similar to the side-to-side (QP) tap test that can be run directly from my web site. There is a stand-alone version that does not store the results at:
Parkinson's Disease Measurement: PwP, surveys, trials, analysis
And a version that stores the results in a database, which you need to register with first, at:
Parkinson's Measurement > PDMeasure: home page

Reference

[1] Giancardo, L. et al. Computer keyboard interaction as an indicator of early Parkinson's disease. Sci. Rep. 6, 34468; doi: 10.1038/srep34468 (2016).
http://www.nature.com/articles/srep34468

John
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Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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Old 03-10-2018, 09:45 PM #15
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Two years later and I'm still measuring my PD.

timeSinceDX.png

The generally improving trend of the period 7.5 to 12 years after diagnosis seems to have gone in reverse in the last 6 months.

In my view, the side by side tap test is a good way to measure short term changes, such as monitoring the immediate effects of a change of drug regimen.

However, regarding the use of the side by side tap test to measure long term changes in PD, I'm not so sure. My subjective view is that my PD has worsened more than these tests suggest. What seems to happen is that a new symptom develops (e.g. drooling), which gets worse for a while, before stabilizing, only to be followed by a yet another new symptom (e.g. dystonia).

You can run these tests or access the data online, just go to my website:

Parkinson's Disease Measurement: PwP, surveys, trials, analysis

John
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Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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Old 03-11-2018, 12:56 PM #16
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John,
My route seems similar 11 years after dx in which I have been reasonably stable. I have been hit by the extra saliva over the past 3 months and then it levels off. Also, in the mornings my legs tremor/shake rapidly and my toe dystonia is more uncomfortable as well. I had two botox sessions 18 months ago for my legs/feet/toes which helped, but I decided not to put that poison in my body anymore. Who knows how safe that stuff will turn out to be in time. Hang in folks...

Best,
Eric
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Old 03-16-2019, 05:16 AM #17
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An update of my side-to-side tap test results. They now cover the period from just after 7 years to almost 14 years post diagnosis. The regression line is still going upwards. This suggests that I am improving. However, this is probably due to a training effect. My last few readings have been below average, possibly showing a progression in my PD. This is mirrored in my subjective assessment of my symptoms.

timeSinceDXgt10h.png

The decision only to show data which have been collected 600 minutes after the last dose, which in my regimen is Stalevo, L/C/E, was chosen to be almost certainly indicative of an "off" state. There will also be some benefit from the 8mg dose of ropinirole CR and the 1mg dose of rasagilene taken approximately 1200 minutes prior to the test.

John
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Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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Old 03-16-2019, 12:31 PM #18
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john this may interest you as UPDRS is in need of a rebirth.
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