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

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

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