Author Topic: 23 and Me and Parkinson's Research  (Read 4441 times)

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Online Friendly Angel

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Re: 23 and Me and Parkinson's Research
« Reply #30 on: March 08, 2017, 11:50:29 PM »
Today I had my Visit #04 and second spinal tap. 

I think they modified the lists I memorized so that not all 12 words were there... that kind of messed me up - I'll have to practice some more.

The first lumbar puncture I had last year went pretty smoothly.  This one was more complicated - the neurologist kind of brushed a nerve or something with the needle and I got what felt like an electric shock going down my leg and fainted.  She said we could quit but I told her to try again and the second attempt was successful at extracting 18mL of cerebral spinal fluid.  She was impressed with my commitment and pain tolerance.

Neurology exam didn't find any symptoms of PD, but did reveal I have some dead reflexes in one foot.

It's embarrassing how much they thank me for going through this.

Bonus:  PPMI coffee cup and a frame-able certificate of appreciation.
« Last Edit: March 08, 2017, 11:52:46 PM by Friendly Angel »
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Online Friendly Angel

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Re: 23 and Me and Parkinson's Research
« Reply #31 on: March 10, 2017, 04:10:09 PM »
Update:

I just signed up for the brain and tissue donation program associated with the study; so when I die, they will remove my brain. 

They made a big deal out of how I could still have an open-casket funeral if wanted and nobody would notice ... that made me chuckle.

I asked how they find out I'm dead and they said my next of kin has to tell them... I'm not sure DW will be prepared to make that phone call.

Not sure why they want skin too... but they can have it.
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Offline Galactus

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Re: 23 and Me and Parkinson's Research
« Reply #32 on: March 11, 2017, 12:55:48 PM »
   

   My wife and I just sent our spit in a few weeks ago. How long did it take you to get your DNA reports?
From any finite collection of facts one may construct an infinite number of theories, and the probability approaches zero that any one of them is true.      - Michael Flynn

Online Friendly Angel

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Re: 23 and Me and Parkinson's Research
« Reply #33 on: March 11, 2017, 01:19:38 PM »
   

   My wife and I just sent our spit in a few weeks ago. How long did it take you to get your DNA reports?

I think it was about a month... that was over 10 years ago though so 1) I don't really remember and 2) it's probably different now.  It looks like they offer an ancestry only test, and an ancestry plus health test.  Website says 6-8 weeks.  Back when I did it there was only one test and it was on sale for $99 and it had all the health data from before whatever it was that got them in a little trouble about that.

What was your motivation?
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Offline Galactus

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Re: 23 and Me and Parkinson's Research
« Reply #34 on: March 11, 2017, 09:10:10 PM »
 


  We are more interested in my wife's family history. Her father claims some native american ancestors, so we shall see.
From any finite collection of facts one may construct an infinite number of theories, and the probability approaches zero that any one of them is true.      - Michael Flynn

Online Friendly Angel

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Re: 23 and Me and Parkinson's Research
« Reply #35 on: April 28, 2017, 04:56:02 PM »
And now, 23andMe is cleared to advertise health risk reports.

Quote
Recently, the U.S. Food and Drug Administration (FDA) authorized 23andMe to market genetic health risk reports to customers in the U.S. Our genetic health risk reports can help you learn about genetic variants that may increase your risk of developing certain health conditions.

Since they had already done all that on me before they got in trouble, I just got my report.  The specific conditions are rated by the confidence level in the test, and my risk vs the gen pop's risk. 

« Last Edit: July 27, 2017, 08:21:32 PM by Friendly Angel »
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Offline superdave

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Re: 23 and Me and Parkinson's Research
« Reply #36 on: April 28, 2017, 05:15:23 PM »
thanks for sharing.
« Last Edit: April 28, 2017, 05:36:26 PM by superdave »
I disavow anyone in the movement involved in any illegal,unethical, sexist, or racist behavior. However, I don't have the energy or time to investigate each person and case, and a lack of individual disavowals for each incident should not be construed as condoning such behavior.

Online Friendly Angel

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Re: 23 and Me and Parkinson's Research
« Reply #37 on: April 28, 2017, 05:55:32 PM »
I hope not to infringe too much on your request not to discuss the results, just a quick comment.
Everyone has to die of something, and there's no shortage of things that will do it.  So even the healthiest person out there will have elevated risks for some things and lowered risks for others.

Of course.

I think the conversation should be about how people can use these results realistically.  In my case, nothing really points to something I'd see my doctor about.  One of the other gene mutations PPMI is studying has a 50% risk of PD by age 80... I'm not sure what I'd do about that but it would certainly affect my attitude.  Some of these conditions might have preemptive things you could do if you had a high probability - others not.  I think most doctors wouldn't even want to consider a report like this in most cases. 
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Online daniel1948

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Re: 23 and Me and Parkinson's Research
« Reply #38 on: April 28, 2017, 07:27:25 PM »
I did the 23andme thing a few years ago. I browsed the risk factors, but most were of the form "there's a 40% chance that your gene gives you a 6% chance of thus-and-such. My risk of Alzheimers is slightly elevated above the average. My risk of something else is slightly less than the average. And so on and so forth. They correctly predicted that I do not like cilantro. Apparently there's a single gene for that.

But I did the test because I was curious about my ethnic background. My grandfather insisted that in spite of a thousand years of the diaspora in Eastern Europe, we were 100% Jewish. That seemed unlikely to me, given that the Jews of the Middle east are much darker-skinned than we are. Turns out I am 94% Ashkenazi. I'm 3% Neanderthal (twice the average). And a couple of percent mixed European. According to Wikipedia, the Ashkenazi line was probably formed from a relatively small population of Middle Eastern men who went to what is now Italy and took European wives, and after that there was very little mixing with the locals. So my grandfather was right that we are nearly 100% Ashkenazi, but I was right also because Ashkenazi has a large European component, and wrong because apparently, for the next thousand years, there was not much mixing.

I'm not sure what good it would do me to know that I have a 6% greater chance of getting this, and a 4% lowered chance of getting that.

Occasionally I get emails from 23andme asking me to take an on-line survey, which I do. Then a bot thanks me for helping research. I think I might balk at getting a spinal tap. That just sounds really scary. I have a very low pain tolerance.
Daniel
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"Anyone who has ever looked into the glazed eyes of a soldier dying on the battlefield will think long and hard before starting a war."
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Offline Soldier of FORTRAN

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Re: 23 and Me and Parkinson's Research
« Reply #39 on: April 28, 2017, 07:46:06 PM »
It's been a while since I looked at 23andMe.  Turns out, I have one Neanderthal gene variant actually associated with a trait, and that trait is reduced back hair. 

Nice! 
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Offline Galactus

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Re: 23 and Me and Parkinson's Research
« Reply #40 on: April 29, 2017, 11:58:40 AM »


  Finally got our results. My wife has no Native American ancestry but I do(0.3%). I also have about 15% Irish/British ancestry that no one in my family ever mentioned. And some Yakut(0.1%).
From any finite collection of facts one may construct an infinite number of theories, and the probability approaches zero that any one of them is true.      - Michael Flynn

Online Friendly Angel

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Re: 23 and Me and Parkinson's Research
« Reply #41 on: July 27, 2017, 06:58:54 PM »
Study Visit #5 next month.  Not a spinal tap visit, just blood and urine samples, questionnaires, and movement disorder testing.

New though, is that I have agreed to let them take extra blood for stem cell research in an unrelated study.


Quote
Induced pluripotent stem cells (iPSCs), which greatly circumvent the ethical issue of human embryonic stem cells (ESCs), can be induced to differentiate to dopaminergic (DA) neurons, and hence be used as a human disease model for Parkinson's disease (PD). iPSCs can be also utilised to probe the mechanism, and serve as an ‘in vivo’ platform for drug screening and for cell-replacement therapies. While iPSCs hold great promise for PD, there are still numerous scientific and clinical challenges that need to be surmounted before any clinical application can be safely introduced.

Also - in the 23andME topic, they have identified a "second cousin" member who appears to be related to my biological father (who abandoned his family when I was very young - no contact with him or his relatives since).  I'm not looking for connections... not sure if I would respond to a request to share info.  It might be nice to know if the sperm donor has/had Parkinson's.
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Offline 2397

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Re: 23 and Me and Parkinson's Research
« Reply #42 on: July 27, 2017, 08:14:32 PM »
Finally got our results. My wife has no Native American ancestry but I do(0.3%). I also have about 15% Irish/British ancestry that no one in my family ever mentioned. And some Yakut(0.1%).

So does 0.3% mean that approximately 1-2 out of your 512 great great great great great great great grandparents were Native American?

Online Friendly Angel

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Re: 23 and Me and Parkinson's Research
« Reply #43 on: September 07, 2017, 02:16:43 PM »
Visit #5 is in the books.

No memory testing or puzzles.  Just blood and questions and physical/neuro exam.  Doctor watched me walk, tap my foot, pat my knee, recite the months of the year backwards, repeat back a complicated sentence, etc.

Although I have a little shake in my hands she says it's not a PD tremor.  I think I only have this in her office, my hands are usually steady.  She has an accelerometer app on her phone so I held the phone and it produced a vibration chart.

And my blood pressure is always higher in the exam room than at home.

She lingered a little bit when I told her about some infrequent episodes of double vision.  She didn't think it was neurological but she had to assign some kind of score to what I was describing and was unsure what score would be appropriate.

In the waiting room I watched quite a few real neurology patients come through with all sorts of symptoms...sad and creepy.

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Re: 23 and Me and Parkinson's Research
« Reply #44 on: September 07, 2017, 03:04:40 PM »
This is really cool.
common mistake that people make when trying to design something completely foolproof is to underestimate the ingenuity of complete fools.

 

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