Author Topic: 23 and Me and Parkinson's Research  (Read 3672 times)

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Offline superdave

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Re: 23 and Me and Parkinson's Research
« Reply #15 on: October 30, 2015, 10:28:47 AM »
My neurologist is too young for Spinal Tap jokes.

this is the most distressing part of your story so far.

Online Friendly Angel

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Re: 23 and Me and Parkinson's Research
« Reply #16 on: January 19, 2016, 09:05:33 PM »
Tomorrow I go in for my DaTscan - sort of a Parkinson's baseline brain evaluation.  There will be a lot of waiting around while the RADIOACTIVE IODINE SOAKS INTO MY BRAIN before I actually get scanned.

http://radiology.ucsf.edu/blog/neuroradiology/new-test-can-help-diagnose-parkinson%25e2%2580%2599s

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Offline superdave

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Re: 23 and Me and Parkinson's Research
« Reply #17 on: January 20, 2016, 08:00:46 AM »
anytime i get some sort of scan, I secretly hope something like this shows up in the image


Offline brilligtove

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Re: 23 and Me and Parkinson's Research
« Reply #18 on: January 20, 2016, 08:53:10 AM »
Very cool what you are doing.
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Online Friendly Angel

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Re: 23 and Me and Parkinson's Research
« Reply #19 on: February 29, 2016, 06:27:34 PM »
Going in Wednesday for Visit #1 (previous two visits were for consent, and baseline).

Visit #1 includes a spinal tap and an MRI.
They said I shouldn't exercise for 48 hours after... no more than walking.
Apparently the trick with a spinal tap is to hold REALLY STILL while they poke you.
I expect I'll have a story or two to relate afterwards.

There are a few neurological tests they're going to be giving me... do you think it would be cheating if I looked them up and practiced first?

Example: 
« Last Edit: February 29, 2016, 06:40:17 PM by Friendly Angel »
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Offline SQ the ΣΛ/IGMд

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Re: 23 and Me and Parkinson's Research
« Reply #20 on: March 01, 2016, 06:54:57 AM »
The only thing I can add to this discussion is that my neurologist prescribed a medication for me called Pramipexole to help with restless legs syndrome.
I have it bad. I kick and twitch all night. When I take this medication I sleep without problems.
I asked my doc what it's for and he said it's actually PD medication which stimulates dopamine receptors that weaken due to neurological disorders.
It has worked wonders for me and I definitely know when I forget to take it.
Hopefully it helps PD patients as much as it has helped me.

Good luck Friendly Angel - I hope all works out for you and the others you might help in volunteering for this research.
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Offline Andrew Clunn

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Re: 23 and Me and Parkinson's Research
« Reply #21 on: March 01, 2016, 08:15:23 AM »
This is super cool.  I had no idea that the consumer level genetic testing was used for anything like this.
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Offline stonesean

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Re: 23 and Me and Parkinson's Research
« Reply #22 on: March 01, 2016, 09:29:32 AM »
As a guy who dodged the Huntington's Disease bullet and is eternally greatful/hopeful to anyone helping kick neurological disorders in the balls, cheers to you, man!
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Offline Skulker

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Re: 23 and Me and Parkinson's Research
« Reply #23 on: March 01, 2016, 09:49:32 AM »
 :cheers: :science:
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Online Friendly Angel

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Re: 23 and Me and Parkinson's Research
« Reply #24 on: March 01, 2016, 12:51:03 PM »
OK I looked up one of the tests - six different lists of 12 words, don't know which one they'll give me.

I'm going to try to memorize them all... .  I'm not trying to screw up the research, I just can't resist the challenge.
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Offline HanEyeAm

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Re: 23 and Me and Parkinson's Research
« Reply #25 on: March 02, 2016, 09:09:39 PM »
Thanks you for volunteering for research. Folks volunteering for studies is the only way we will learn more about Parkinson as well as all matters of the human condition.

If you do look at those word lists, you will screw up the research. Please don't do it.

Did they name the tests on the consent form?

Honestly, them sending you a smell test by mail and giving you the names of the tests on the consent form suggests research integrity issues.

Online Friendly Angel

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Re: 23 and Me and Parkinson's Research
« Reply #26 on: March 03, 2016, 12:37:09 AM »
Thanks you for volunteering for research. Folks volunteering for studies is the only way we will learn more about Parkinson as well as all matters of the human condition.

If you do look at those word lists, you will screw up the research. Please don't do it.

Did they name the tests on the consent form?

Honestly, them sending you a smell test by mail and giving you the names of the tests on the consent form suggests research integrity issues.

Too late - yes I memorized 6 lists of 12 words.  Nailed that part of the exam, but they weren't impressed.

They sent me the smell test about 6 months ago - I think it was before I had even consented to the study, maybe part of the potential cohort screening or something.  Today they said they don't do that any more, and they gave me a more advanced version of the same test in the exam room.

ETA - yes, the smell test was part of the pre-selection process to decide which group I would be assigned to (genetic cohort, unaffected with PD):
Quote
Also of note, the smell test and self-report questionnaire that we mailed you are being phased out of the study so your study group assignment will not be made based on this assessment. 

During the consent visit they gave me a spreadsheet that shows which tests or procedures I'll have for each of my 12 semi-annual visits - so I just Googled them and this list memorizing thing kind of appealed to me as a hack.  I figure if I really did have a cognitive impairment I wouldn't be able to do that anyway - and what they're really looking for is deterioration over time, so I'll have to memorize them again next time or else I'll look like I'm losing it.  There were several other cognitive tests that would've shown any issues as well... for instance given a string of 3 to 6 letters and digits, sort them in your head and repeat them back numbers first smallest to largest, and then letters in alphabetical order.  Some of the tests have a specific name like "Montreal Cognitive Assessment", and some of them are more general like "semantic fluency".  My mom was a clinical psychologist, I remember her discussing a lot of these tests and how brain impairment makes people not be able to do them.

There are also physical tests looking for fine motor skills, balance, coordination and things, and blood work.

The MRI was much less traumatic (noisy) than the last one I had.

And the spinal tap wasn't awful either... a couple moments during the procedure were painful enough to make me wince , but overall, just not that bad.  Can't exercise for 48 hours though.

Next visit in 6 months.
« Last Edit: March 03, 2016, 03:37:07 PM by Friendly Angel »
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Offline HanEyeAm

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Re: 23 and Me and Parkinson's Research
« Reply #27 on: March 03, 2016, 06:49:14 AM »
Thanks for your detailed reply. Your guess about the use of the memory test data is likely partially correct, but they will use the data in other ways that you are not aware of. Unless the sample size is very, very large, making your data an outlier, training for the test will not only throw off the science but could have negative consequences for Parkinsons patients in the future in ways you can't guess (for example, if they use data to create norms which patients will be compared against).

I'm not sure about this particular study, but often investigators have to put considerable resources into recruiting very few subjects that fit a particular genotyoe or phenotype. And I'm guessing that the have compensated you hansomly fir your time.

If you care about the science, please contact the research coordinator and tell them that you prepped for the cogitive tests. Sorry if that seems judgmental, but tens of thousands of dollars are often spent per patient in these projects, and the impact of one patient's bad data can have very negative effects on the science.

Online Friendly Angel

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Re: 23 and Me and Parkinson's Research
« Reply #28 on: March 03, 2016, 12:12:21 PM »
Of course I care about the research - that's why I'm doing this.  HanEyeAn - you sound like you understand study protocols and research integrity, and I appreciate and value your advice.  I'm not going to report myself now, but maybe I will at the conclusion of the study.  If they get suspicious though, I'd be completely open.

The study is looking for biomarkers and progression markers for Parkinson's.  The stated goal is for 1300 participants in 5 different subject groups, so far they have about 900 (200 registrants out of 600 goal in my group).  I get my travel expenses reimbursed - just public transit fees for me, but some participants get airfare and hotel depending on where they live and where the closest associated facility is located.  On the ODD numbered visits (lumbar puncture and MRI), I get a $200 gift card, and on the EVEN numbered visits (mostly interviews and cognitive) I get a $50 gift card. 

The Hopkins test has been given to hundreds of thousands of people for all kinds of reasons, the norms are already well-known.  I am confident my datapoint won't change that at all.  I do all kinds of fun memory games just for entertainment and to enhance memory skills - I probably am an outlier.

The physical tests include things like tapping your foot - I "practice" that all the time.  I also practice standing on one foot sometimes, just for fun... maybe that makes me better at the balance test they give me in the exam.  Also they have some physical tests that look for Parkinson's type tremors - there'd be no way to disguise that of course.

I find the whole process interesting - it's usually clear what each test is trying to reveal about the subject, and the methodology they use is usually quite clever.  One of the tests was sort of a cipher with symbols assigned to numbers and then you have to "de-code" a string of symbols using the key - I could see why someone with spatial orientation problems would have trouble with that - especially because the same symbols mean a different number depending on the rotation. 

The "schedule of activities" includes 50 items - some to be completed on every visit, some at 6-month intervals, and some at 12-month intervals.
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Offline stonesean

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Re: 23 and Me and Parkinson's Research
« Reply #29 on: March 03, 2016, 01:37:08 PM »
Of course I care about the research - that's why I'm doing this.  HanEyeAn - you sound like you understand study protocols and research integrity, and I appreciate and value your advice.  I'm not going to report myself now, but maybe I will at the conclusion of the study.  If they get suspicious though, I'd be completely open.

The study is looking for biomarkers and progression markers for Parkinson's.  The stated goal is for 1300 participants in 5 different subject groups, so far they have about 900 (200 registrants out of 600 goal in my group).  I get my travel expenses reimbursed - just public transit fees for me, but some participants get airfare and hotel depending on where they live and where the closest associated facility is located.  On the ODD numbered visits (lumbar puncture and MRI), I get a $200 gift card, and on the EVEN numbered visits (mostly interviews and cognitive) I get a $50 gift card. 

The Hopkins test has been given to hundreds of thousands of people for all kinds of reasons, the norms are already well-known.  I am confident my datapoint won't change that at all.  I do all kinds of fun memory games just for entertainment and to enhance memory skills - I probably am an outlier.

The physical tests include things like tapping your foot - I "practice" that all the time.  I also practice standing on one foot sometimes, just for fun... maybe that makes me better at the balance test they give me in the exam.  Also they have some physical tests that look for Parkinson's type tremors - there'd be no way to disguise that of course.

I find the whole process interesting - it's usually clear what each test is trying to reveal about the subject, and the methodology they use is usually quite clever.  One of the tests was sort of a cipher with symbols assigned to numbers and then you have to "de-code" a string of symbols using the key - I could see why someone with spatial orientation problems would have trouble with that - especially because the same symbols mean a different number depending on the rotation. 

The "schedule of activities" includes 50 items - some to be completed on every visit, some at 6-month intervals, and some at 12-month intervals.

My very favorite side effect about doing something similar was that I got to meet and become friends with two brilliant neurologists.

Well.  There it is.

 

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