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Comment by c3534l | Hacker News Reader

My grandmother had Parkinson's and it was awful. How long until I can go to the doctor, get some blood drawn, and see if I'll develop it one day?

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What would you do if you found out you would? (I ask as someone whose great-grandfather, great-uncle, and grandfather all had Parkinson’s.)

I’ve avoided any testing because, as far as I know, there’s nothing preventative to be done. I’d love to hear otherwise. I’ve broached the subject with my last two primary care physicians and both advised that there was no point in knowing.

Yes, the age old debate of knowing versus not knowing.

I think I’ll skip it because it’s not productive.

However, I will point out that your average billionaire with a few decades of advanced notice might be willing to fund research:

https://www.forbes.com/sites/kerryadolan/2022/12/09/exclusiv...

I think if you find out young enough you can probably try to follow a different trajectory in life. Maybe abstain from stuff like finding a partner, having kids, buying a home or saving for retirement. Make plans to end up in circumstances where you're eligible for MAID and just vibe until you're ready to use it.

Well, Michael J. Fox was diagnosed exceptionally young. Most people only suffer when they're of retired age.

That's a good question. I'm not sure. But it feels like something I'd want to either prepare myself for or just have the relief it won't happen to me.

>What would you do if you found out you would?

There's quite a few big decisions to make, no? Preparing financially, making plans for when you're going to retire or what to do before, whether you want to have kids and put them through this, and so on.

If I found out I had a degenerative disease at the very least I'd opt for an egg or sperm donation and not delay having kids. You probably don't want to be in declining health while they're growing up.

> I'd probably opt for an egg or sperm donation

so that any kids produced would have a high probability of having the disease too?

no, so that they don't have a high probability of having a disease because I'd not be passing it on. How did you read anything else into that statement?

It could be more clear. Something like "use a donor". "Donation" can go either way (giving or receiving).

If you know for certain, then you might do things you otherwise wouldn't.

E.g decide to have children or not, plan a will. Live life to the max. Potentially get a head start on treatment if one were ultimately available, even if super experimental and maybe even not working in the end.

Honestly, there are many reasons to know beforehand and not a lot of reasons to not know.

Ignorance is bliss

Parkinson’s does not prevent any of those.

So if you gonna die anyways you won’t live life to the max? Probably better off not finding out and live life to the max without the thought of it

Things like deciding when to retire. You might want to retire earlier and spend time doing things instead of waiting to retire to get maximum retirement payout.

But will you really enjoy your days with that cloud over your head, if I were to choose I wouldn’t want to know

> I’ve avoided any testing because, as far as I know, there’s nothing preventative to be done. I’d love to hear otherwise.

Parkinson's is a nutritional disorder combined with genetic risk.

Zinc and Parkinson's https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8125092/

Pyridoxine (B6) and Parkison's https://onlinelibrary.wiley.com/doi/abs/10.1002/ajmg.b.30198

Riboflavin and Parkinson's https://www.frontiersin.org/articles/10.3389/fneur.2017.0033...

Nutrition and Parkinson's https://link.springer.com/article/10.1007/BF02938409

https://www.frontiersin.org/articles/10.3389/fnagi.2014.0003...

https://www.sciencedirect.com/science/article/abs/pii/S00747...

https://link.springer.com/article/10.1186/s12883-014-0212-1

There are lifestyle factors that are supposed to slow the onset and progression. Granted most of those, like exercise, are supposed to be things we do anyways.

Pick up a nicotine addiction.

Seriously, it has long been understood that people who smoke have dramatically lower levels of parkinsons. It comes from the neuroprotective properties of nicotine. You don't have to become a smoker, you could theoretically use any of the other forms (vape, gum, patch)

https://www.apdaparkinson.org/article/smoking-and-parkinsons...

Smoking and Nicotine addiction are still bad.

You don't have to smoke cigarettes to get nicotine. Using a patch just gives you nicotine in a very safe way, and nicotine itself isn't particularly harmful.

Nicotine is wonderful. 2mg and 4mg lozenges are readily available, you don't have to take up smoking to get it. It's excellent for many, many things: cognition, focus, appetite control, positive habit formation, etc.

Addiction is literally its only downside.

Curious if you have any links to support lower incidence of Parkinsons for smokers. I found this, which states that nicotine does not slow the disease once started: https://www.michaeljfox.org/news/nicotine-patch-not-benefici...

I'd encourage you to just search google scholar for "nicotine and parkinsons" there are dozens and dozens of studies. It's been well established for decades now, as it stood out, especially in the past, that cigarette smokers weren't developing parkinsons as expected. Here is a recent meta study though:

https://www.sciencedirect.com/science/article/abs/pii/S01674...

There have also been numerous studies that have found that starting nicotine once symptoms begin is too late, with little or no effect. It is hypothesized that there is some critical point that once crossed, nicotine no longer has an effect. Parkinsons is believed to slowly develop over years or decades, and nicotine stunts this early progression.

You could do a genetic test, Parkinsons has well associated genetic markers and consumer level companies can do testing of this (and others). 23 and me have a bit on it.

https://www.23andme.com/topics/health-predispositions/parkin...

it's not a trivially heritable disease, genetic testing can't tell you with any real confidence if you'll develop symptoms

edit: you may be able to contact a parkinson's genetics counselor specialist which may be more useful

Although if 23andme say you don't have the genes, you might still have them. Also they'll probably sell your data.

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