Author Topic: 23 and Me and Parkinson's Research  (Read 8832 times)

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Offline The Latinist

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Re: 23 and Me and Parkinson's Research
« Reply #45 on: September 07, 2017, 03:18:44 PM »
Thanks for keeping us updated.
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Offline Friendly Angel

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Re: 23 and Me and Parkinson's Research
« Reply #46 on: September 07, 2017, 03:48:59 PM »


Looks like they're still searching for participants.  I'm in the "genetic cohort" group; the "genetic registry" group is people with the same condition but they get a simplified version of the exams, mostly phone calls.

Turned in my expense report today - $39 - breakfast, lunch, and public transportation.  Some of the cohorts come from out of state and get airfare, hotels, and rental cars, so I'm pretty cheap data.

The researchers do update conference calls that they invite participants to listen in on, and they also make professional presentation materials available to look at; it's a nice way to thank us for being involved.







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Offline The Latinist

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Re: 23 and Me and Parkinson's Research
« Reply #47 on: September 07, 2017, 04:54:18 PM »
I’ve often thought of doing 23andme.  I was on the point of doing it before their spat with the FDA.  It looks like they’re now able to give some health-related genetic results. Has anyone down 23andme since the changes?

I am perhaps unreasonably concerned about the future uses of such data once its available, though.
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 HighPockets

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Re: 23 and Me and Parkinson's Research
« Reply #48 on: September 07, 2017, 05:46:30 PM »
I gave Zaros a kit for x-mas this year (last year...whatever) and got one for me for half price. the health info is really really basic, IIRC FA got approached individually  because of a genetic marker they found. but i don't know if that would have been in an initial report that me as an end user would have figured out. To be honest I looked at the original reports, said yeah, 98% European, good chance i'm not lactose intolerant, and then kind of stopped looking though the data.

The privacy concerns did cross my mind as well. but after actually seeing the checks and balances in place i'm pretty comfortable with it.
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Offline Friendly Angel

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Re: 23 and Me and Parkinson's Research
« Reply #49 on: September 07, 2017, 06:13:16 PM »
I’ve often thought of doing 23andme.  I was on the point of doing it before their spat with the FDA.  It looks like they’re now able to give some health-related genetic results. Has anyone down 23andme since the changes?

Check out this page for a description of what's included in the health reports - it includes genetic health risks and carrier status, but far fewer specific disease risks than I got from my pre-FDA spat report:

https://www.23andme.com/dna-health-ancestry/

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Offline The Latinist

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Re: 23 and Me and Parkinson's Research
« Reply #50 on: September 07, 2017, 11:06:31 PM »
I understand that one can still get that information by combining the raw data with lists of known genes using open-source software, but it requires a lot more work.

The other thing that makes me hesitate is the expectation that whole-genome sequencing will become much more readily available over the next 5-10 years.
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 #51 on: March 22, 2018, 12:27:41 PM »
UPDATE:

Had Session 6 yesterday, my two-year anniversary as a participant. (2.5 years since first contact)
Same cognitive testing as before:

  - I still had the lists of words memorized, but now they read them back again and leave off a few which sounds very much like they are controlling against people who memorized the lists... much harder to remember which ones aren't included.

  -  Another test that's really testy is giving a list of letters and numbers and then you have to memorize them and sort them in your head and recite them back in numeric and alphabetical order; increasing lengths of string up to seven characters.  It's a little frustrating because they won't tell you how you scored.  I think I could get better at this one with some practice.

Neurological exam went the same way - lots of tapping and pointing, doing two things at once, balance, gait, resisting pushes.

Doctor says I have no symptoms of PD, but my reflexes are not very good - she did a lot of hitting various body parts with her little hammer.  Also a little foot neuropathy which isn't new... some tingling and loss of sensation.  She wiggled my big toe and I couldn't tell if she was pointing it up or down.

Spinal tap went really well - best of the three I've had - I'll get six total for the program.  No after-effects like headache or soreness they said might happen.

Another $200 remuneration, and an autographed book by Michael J Fox.

I have to go back next week for the brain scan because of scheduling.

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Offline daniel1948

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Re: 23 and Me and Parkinson's Research
« Reply #52 on: March 22, 2018, 07:53:36 PM »
... my blood pressure is always higher in the exam room than at home.

Are you using the same method at home as they use at the doctor's office? I had one of those automatic ones that strap to your wrist, and the numbers were way off. So I got one that goes on your upper arm, and that one also was significantly off, but irregularly so. I finally got a manual aneroid sphygmomanometer, and that one gives me the same reading the nurse gets.

  -  Another test that's really testy is giving a list of letters and numbers and then you have to memorize them and sort them in your head and recite them back in numeric and alphabetical order

I'm terrible at that sort of test. I'm the world's worst scrabble player, because even though i have a very good vocabulary for speaking and writing, I cannot see words in jumbled-up letters for the life of me.
Daniel
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Offline Friendly Angel

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Re: 23 and Me and Parkinson's Research
« Reply #53 on: March 22, 2018, 08:49:18 PM »
... my blood pressure is always higher in the exam room than at home.

Are you using the same method at home as they use at the doctor's office? I had one of those automatic ones that strap to your wrist, and the numbers were way off. So I got one that goes on your upper arm, and that one also was significantly off, but irregularly so. I finally got a manual aneroid sphygmomanometer, and that one gives me the same reading the nurse gets.


Yeah, I have an automatic elbow sleeve...I'm just more relaxed at home.  They took my blood pressure sitting and then right after standing up and it went down when I stood up.  I'm not worried about it - it's not that high, but I'm rather proud of my cardiovascular conditioning and it'd be nice if the doctors would acknowledge it.

For the brain scan, I get an injection of radioactive juice first.  They're looking for dopamine irregularities.  I've only had that test once before... it's relaxing if you're not claustrophobic (DaTScan / SPECT imaging).  The brain MRI I had a few years ago for dizziness was awful - sounded like fireworks inside my head for an hour.



Neurologist said I had a good spine for lumbar punctures - I told her my objective was to be her easiest and most charming patient.

Title of his book is revealed to be a joke about short people... with double entendre for optimism.




« Last Edit: March 22, 2018, 09:17:39 PM by Friendly Angel »
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Offline Friendly Angel

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Re: 23 and Me and Parkinson's Research
« Reply #54 on: September 14, 2018, 02:18:30 PM »
My Month-30 visit is next week... interviews and testing, no spinal tap.  This will mark the half-way point of the 60-month program.

Since my last visit though I've lost 25 pounds, they'll probably notice that.

Also I started a new job and my closest colleague has had PD for 10 years; he knows my researcher-neurologist although she's not hs regular doctor.

Should be plenty to talk about.
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Offline The Latinist

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Re: 23 and Me and Parkinson's Research
« Reply #55 on: February 02, 2019, 01:32:56 AM »
I understand that one can still get that information by combining the raw data with lists of known genes using open-source software, but it requires a lot more work.

The other thing that makes me hesitate is the expectation that whole-genome sequencing will become much more readily available over the next 5-10 years.

I've been continuing to watch the web for the status of whole-genome sequencing prices.  It's now possible to get 30X whole-genome sequencing with MtDNA for about $300.  One lab I was looking at recently offers 130X whole-exome (coding regions) and 30X whole-genome and MtDNA for $999.  You can get a VCF showing all variants present in 20,000 genes, and you can get your entire DNA sequence on HDD for a small additional fee (200-250 GB of data).
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 #56 on: March 05, 2019, 03:46:11 PM »
My Month-36 visit is tomorrow.  I'll be getting the full battery of tests with the spinal tap (#4 of 6).  It'll be raining so I won't get to enjoy that beautiful San Francisco weather and campus grounds.

The newsletter said they had now completely populated the 1400 participant spots they were hoping for.

Quote
The Parkinson’s Progression Markers Initiative (PPMI) has reached an important milestone: the study completed enrollment. We have now met the ambitious goal we set back in 2010 of enrolling 1,400 participants, including 600 with rare genetic mutations.

One of the advantages of PPMI is that the depth and breadth of the data it contains can lead to unexpected findings. A group of researchers using several datasets, including PPMI, found that removal of the appendix was associated with lower risk of developing Parkinson’s disease as well as a delayed age of onset. The findings were published in Science Translational Medicine. MJFF’s Vice President of Medical Communications Dr. Rachel Dolhun says of the study: “It’s a piece to the puzzle. It suggests protein misfolding might happen in peripheral organs to be an initiating factor in [Parkinson’s] disease, and that the appendix might be an organ that could contribute.”



And I saw a news story that Michael J Fox is not doing well; had spinal surgery and a long recovery.  He said he's losing hope that he'll be around long enough to benefit from any new science.

« Last Edit: March 05, 2019, 03:50:11 PM by Friendly Angel »
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Offline CarbShark

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Re: 23 and Me and Parkinson's Research
« Reply #57 on: March 05, 2019, 04:13:06 PM »
 :(
and Donald Trump is President of the United States.

I'm not a doctor, I'm just someone who has done a ton of research into diet and nutrition.

Offline bachfiend

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Re: 23 and Me and Parkinson's Research
« Reply #58 on: March 05, 2019, 05:02:37 PM »
... my blood pressure is always higher in the exam room than at home.

Are you using the same method at home as they use at the doctor's office? I had one of those automatic ones that strap to your wrist, and the numbers were way off. So I got one that goes on your upper arm, and that one also was significantly off, but irregularly so. I finally got a manual aneroid sphygmomanometer, and that one gives me the same reading the nurse gets.

  -  Another test that's really testy is giving a list of letters and numbers and then you have to memorize them and sort them in your head and recite them back in numeric and alphabetical order

I'm terrible at that sort of test. I'm the world's worst scrabble player, because even though i have a very good vocabulary for speaking and writing, I cannot see words in jumbled-up letters for the life of me.

So, yu’roe ubnlae to raed tihs stnnecee,  whtiuot it mkanig ssnee?
Gebt ihr ihr ihr Buch zurück?

Offline Friendly Angel

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Re: 23 and Me and Parkinson's Research
« Reply #59 on: March 07, 2019, 11:59:28 PM »
My own personal "brain in a vat" experiment.




"Removal Specialist"  .... that would make a good short story.
« Last Edit: March 08, 2019, 12:02:22 AM by Friendly Angel »
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