Author Topic: 23 and Me and Parkinson's Research  (Read 9110 times)

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Offline Friendly Angel

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Re: 23 and Me and Parkinson's Research
« Reply #60 on: March 08, 2019, 12:47:57 PM »
In addition to offering my brain, post mortem, I volunteered to participate in a "wearable" study.  They'll give me a watch like this, but I won't have access to the data - I won't even know what data they're collecting... that's kind of weird and it'll interfere with my Fitbit, but OK.



https://mhealthintelligence.com/news/fox-foundation-to-use-mhealth-wearables-in-parkinsons-research
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Offline The Latinist

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Re: 23 and Me and Parkinson's Research
« Reply #61 on: March 08, 2019, 05:55:42 PM »
This is all very interesting, but I’m not sure I’d participate if I didn’t have access to the data gathered.
I would like to propose...that...it is undesirable to believe in a proposition when there is no ground whatever for supposing it true. — Bertrand Russell

Offline Friendly Angel

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Re: 23 and Me and Parkinson's Research
« Reply #62 on: September 13, 2019, 05:17:06 PM »
Visit #9 was yesterday; my 42nd month of involvement.  No spinal tap, no quizzes, just blood draw and a simple neuro exam.

I told the doctor and assistant that I was "ridiculously healthy". 
Assistant took my BP as 117/70 and said "Wow, wish I could get mine that low."
BP actually went DOWN when she took it again after standing up.
Usually my BP goes up when I see a doctor, maybe I'm getting good at biofeedback.

I agreed to wear the watch thing.  It tracks motion with an accelerometer, skin temperature, humidity; no GPS.  Things that might be a trigger or an indicator of a potential seizure or tremor... which I don't have.  The watch looks exactly like the picture except with a rubberized wrist band.  I wear it on my right so I can still wear my fitbit on my left.  They said it would provide useful data even if I never have any kind of episode.

Not related, but the assistant is from England and of Pakistani ethnicity - we talked about Blinded By The Light https://www.imdb.com/title/tt8266310/.  I said I hadn't seen it but heard an interview with the real guy and I thought it was a fun story but "How could it be that Bruce Springsteen sings the lifesongs of a Pakistani teenager from England?"  and then I realized "When I was a teenage farm boy in Iowa, a flamboyant queen from England was singing my lifesongs."  Sir Elton John is performing TONIGHT within sight of the exam room I was in at the time.
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