Parkinson's Disease Tulip


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Old 10-08-2018, 10:07 PM #1
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Default Measuring your motor symptoms using the side-to-side tap test

People with Parkinson's (PwP) often find new symptoms developing or old methods of treatment that worked well in the past are becoming less effective. For instance, your 3 times daily 100mg levodopa/carbidopa drug regimen, that used to work fairly well, is now leaving you with longer and longer "off" periods.

StalevoVitC.png

The side-to-side tap test gives a good, but not perfect, measure of the intensity of your PD motor symptoms at a particular point of time. It involves sitting in front of a lap-top and first using your left-hand index finger only, seeing how many times you can type q followed by p in 30 seconds, and second repeating this procedure using just your right-hand index finger. For a free app to run the test use:

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

Note: high scores are good.

Important. As you repeat the test you learn how to do it better. This learning effect will distort the results. Most of the learning will take place in the first 10 times that you do the test. So, to eliminate this effect do the test 10 times for practice, throwing away the scores, before doing the test for real. You only need to do this once: once you start doing the test regularly the impact of the learning effect is negligible.

You should do this test at a time when your environment is stable. That is: you are not eating and all doses of the drugs that you take are either "finished" (e.g. levodopa/carbidopa has a half-life of about 90 minutes) or having almost constant effect (e.g. rasagiline). To test that this is the case and to get baseline data, run the test three or four times at 10 minute intervals.

If these precautions are followed, the test should be accurate enough to pick-up the effect of taking a dose of levodopa: first nothing appears to change, then after about 30 minutes (it varies from person to person) you notice a distinct improvement, reaching a maximum after about 60 minutes, then plateauing for 3 to 4 hours, before quite rapidly going "off". To test for this take the test at 10 minute intervals throughout this whole period.

What the test does less well is to measure the differences between people. This is because different people attack the test with different levels of enthusiasm.

What the test doesn't do is test for non-motor symptoms.

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 10-10-2018, 11:40 AM #2
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John,

Have you observed any patterns or cycles using your tap test as base frame of reference? For example are there seasonal patterns ? Soo many variables to consider here. Thanks for sharing your work! MD
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Old 10-11-2018, 02:15 AM #3
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moondaughter,

I've not got aound to doing that analysis, but it needs doing.

PDMeasure contains the results, as of now, of 1024 takings of the test by people who have registered for it. See:

https://www.parkinsonsmeasurement.or...Statistics.php

(PDMeasure is my attempt to create an environment where people can give objective data on PD. And where the data is easy to access.)

You may also be interested in this thread from 2013 to 2016 on temporal epidemiology:

Temporal epidemiology

Post 14 shows a seasonal variation using Wonder mortality data from the CDC.

John
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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 10-13-2018, 01:15 PM #4
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Hi John,

How about daily cycles -morning to night?

This video mentions tap testing - also things like a heart rate variability ring that will tell you if you are in sympathetic or parasympathetic dominance ..also mentions that we can improve our BBB integrity with hot/cold alternating showers...ways to finesse the edges and get a read on tolerances .

24 Ways To Hack Your Biological Age From Ancient Wisdom & Modern Science | Ben Greenfield - YouTube

Kind regards,
md
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Old 10-15-2018, 11:59 AM #5
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Default unexpected results

John,

I'm right hand dominant- or at least I thought I was....apparently not when functioning on endogenous dopamine...am taking this tap test before morning dose of med to see how long I should go before taking it. Several tests yesterday and early this morning yielded similar result showing right hand dominance.....but...72 minutes later (testing again after a walk) and no med yet my left hand yielded the higher score even though I feel a bit shakier.....hmmmmm though overall motor coordination I can't yet discern the reallly super subtle fluctuations...I was suprised!! perhaps I should try using my left hand more often-considering the mirror neuron process used in rehabbing stroke patients just maybe I could build new pathways? MD

it does seem typing overall is abit easier with left hand now-never noticed that before tho once i take my med i am pretty sure i will go back to right hand dominance.
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Old 10-16-2018, 07:17 AM #6
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moondaughter,

There are two variables:
- dominant hand (the one you write with);
- worst affected by PD hand.

If we simplify the situation, by making it binary, that gives four types of persons: LL, LR, RL, RR.

I'm LR, left hand dominant, right hand most affected by PD. (But strangely my tremor which started in my right hand is now worst in my left hand).

I can only remember one time in the hundreds of times that I've done this test that my right hand score was better than my left hand score. But, notice that by my being LR both components are in favour of the left hand. I would expect something similar with RL people. However, where the two components have opposing affects on the scores, LL and RR, I would expect the crossover of scores to be more common.

In interpreting the results we must also take into account the noise in the data. If you take the test again immediately after taking it once, you would expect the results to be identical, because nothing in your condition is likely to be changed in that short period of time. But, in practice, you will find a difference that is just noise.

John
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Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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Old 10-16-2018, 03:24 PM #7
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Quote:
Originally Posted by johnt View Post
moondaughter,

There are two variables:
- dominant hand (the one you write with);
- worst affected by PD hand.

If we simplify the situation, by making it binary, that gives four types of persons: LL, LR, RL, RR.

I'm LR, left hand dominant, right hand most affected by PD. (But strangely my tremor which started in my right hand is now worst in my left hand).

I can only remember one time in the hundreds of times that I've done this test that my right hand score was better than my left hand score. But, notice that by my being LR both components are in favour of the left hand. I would expect something similar with RL people. However, where the two components have opposing affects on the scorores, LL and RR, I would expect the crossover of scores to be more common.

In interpreting the results we must also take into account the noise in the data. If you take the test again immediately after taking it once, you would expect the results to be identical, because nothing in your condition is likely to be changed in that short period of time. But, in practice, you will find a difference that is just noise.
g
John
I fall into the RR category...but it was a bit of a Eureka moment...an awakening when I became aware that my left hand was typing more easily -even if for just that short time period and it was
a fairly subtle difference...before then my scores averaged approx a 4 point difference between left and right (right scoring higher).

Late afternoon yesterday produced highest right hand score ever....is it typical that we score higher at that time of day? It seems that I need to take more med in the midday -is this also "typical"? thx md
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Old 10-16-2018, 05:57 PM #8
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moondaughter,

You ask about the timing of high tap test scores (lower symptoms). This will depend on your medication regimen, your endogenous dopamine production, your exercise and your diet.

So far your experimentation has been in the area of pharmacodynamics (what the drug does to your body).

But, you may wish to explore the pharmacokinetics (what the body does to the drug) of your drug regimen. I have written an app to do that:

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

This draws a graph of levodopa equivalent plasma levels on a minute by minute basis throughout the day. See examples of the output from that app in the recent thread:

Sunovion Expects APL-130277 Will Ably Treat Off Episodes, Awaits FDA Decision

You can enter the data describing your own regimen, and also play "what if" by moving around doses and timings etc..

Please note that this is just a mathematical model implementing a theory, a simplification of the real-world. But, it may be sufficiently accurate to give you some pointers as to how to go forward.

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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