amy
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What Faio said. There is a reason all these treatments are on small islands outside the reach of any regulatory agency. They are scams!
Stem cells for PD are still in the research stage–and if you are lucky(?) enough to get in a study it would be FREE. Otherwise, we just aren’t there yet.
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I haven’t had the surgery myself (yet!) but I’ve known several people who have, and ALL of them have improved an impressive amount and are glad they did it (though one friend told me the procedure is pretty scary, because you are awake) (And no I guess you don’t HAVE to be, but I’ve also heard you WANT to be, for the best results.)
So I know that’s not a very specific answer but maybe it helps?
Also, if this helps: my husband, who is an anesthesiologist, says this: Of course there is risk with any surgery, and there is risk of dying…everybody knows that. But to put it in perspective? Your risk of dying is much higher driving TO the hospital than with anything that is going to happen INSIDE the hospital. Tell your husband to wear his seatbelt :o)
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I still ski–both Nordic and downhill! I’m just very cautious–stick to green and easy blue for downhill, and open pretty flat trails for Nordic. But to tell the truth, I was ALWAYS cautious. Now I just have an excuse!
– Amy…also 5 years in :o)
PS. Disclaimer: I didn’t ski last winter–Covid kept us from traveling. I really hope to ski this year.
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Hands down, imho, is the website The Science of Parkinson’s. I don’t think you can find better, clearer information ANYWHERE. Check it out: https://scienceofparkinsons.com/
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Ha! I hum whatever I heard last–the phone ringtone, a stupid song from a stupid ad on TV, or the little tune the washing machine plays to let me know the clothes are ready. Whatever song floats into my head, I guess.
I tend to do it when I am happy/busy… bustling around the kitchen cooking dinner for example.
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Yes. I do not believe PD has affected my voice at all–in fact, I get told to pipe down all the time.
On the other hand, my PD seems to be progressing slowly in general. Five years in, still mild and one-sided, no dopamine replacement (yet). So I can’t say it’s the humming…unless we think humming is neuroprotective? THAT would be a kick!
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Oh, the minute someone points it out I realize I’m doing it. It’s always a song, but sometimes it’s as dumb as the ring tone on my phone.
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I hum constantly! It drives my DH nuts. I thought it was unrelated to PD, but if someone knows that it is I’d be fascinated..
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I also hum constantly, (the phone ringtone is a favorite) but I did it before I had (or before I was diagnosed with) PD. My dad and sister do it too.
Here’s something interesting–a neurologist once told me that kind of nonstop humming (and throat clearing) was a mild form of Tourette’s. I don’t know if he was right, but my dad had one other mild sign of Tourette’s, which was echolalia– where you have a tendency to repeat the last few words of other people’s sentences?
But, if it is/was Tourette’s, it is/was VERY a very, very mild case of it. Though now I wonder, is that at all associated with a risk of PD?
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Ditto exactly and everything you said.
Except as it has gotten into the high 90’s here in FL, I’ve turned to paper. I re-use them several times, but my (cute!) (homemade!) cloth ones are just too hot right now.
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Hi Michel,
Re Azilect: I wish I could answer that! I don’t THINK it does anything for my symptoms, at least not much, but I can’t be certain because my symptoms are very mild…and as I said I take supplements and eat a crazy diet. Who knows what does what?
The one thing I can say is as far as I am concerned it has zero side effects. And that includes eating all the aged cheese and home-fermented sauerkraut and kimchi I can (I love that stuff:o)
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Forgot to add one supplement, which is magnesium. I think it helps with cramps, and possibly restless leg type stuff.
But here is something else: I actually think it would hard to imagine avoiding dopamine replacement forever, for you or me or anyone…and I don’t care how well we take care of ourselves. Plenty of folks avoid gluten, or don’t eat dairy, or eat balanced diets or vegan or whatnot, in this quest. Even keto, which is probably more unusual because it frightens people…I couldn’t be the only one!
I think (someone out there want to disagree?) that if there was any self-care CURE out in the world it would be common knowledge by now. On the other hand, maybe you will figure one out? :o)
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Hi Michel,
I’ve had PD for five years now and still don’t need dopamine. My symptoms remain mild and one-sided. I DO take Azilect, 1mg/day, on the theory that it might be a little neuroprotective. I also take pterostilbene, reishi mushroom, baicalin, and omega 3’s.
I exercise, pretty faithfully (although covid has impacted that a LOT by closing my gym!) But the thing I believe has made the most difference is my diet, which is pretty strict. I eat therapeutic keto–that is, very high fat low carb. I also fast, intermittently every day and longer from time to time.
IMO treating PD is all about keeping mitochondria as healthy as possible–getting them off glucose, increasing autophagy as much as possible.
I don’t think it’ a cure. But I do think I have slowed my progression to a crawl. Though I am only a sample of one!
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I’m curious that so few people are willing to even try keto, given all the (research showing its neuroprotective promise (not just for PD, but for epilepsy, traumatic brain injury, MS, stroke, etc…)
Anyway, I am on a strict keto diet and I intermittent fast as well. (In the end it is all about controlling insulin, encouraging autophagy, and keeping your mitochondria as healthy as possible.) I have been doing this for nearly four years. I’ve had PD for five, it has not progressed, is still one-sided, and I take no dopamine replacement. Of course I can’t be certain it is the diet, because I am an experiment of one.
You do not need to eat meat on keto–that is a myth. It is NOT high protein. It is not difficult–if you willing to cook. It’s pretty tough if you are only willing to eat processed/fast food, though.
I wish someone else would try this, so I could compare notes!
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You can substitute mucuna-pruriens for part (or I guess all) of your dose, but that is because mucuna-pruriens IS dopamine. It is basically a natural source of the same stuff.
It is more likely to make you nauseated. The point of carbidopa/levodopa (C/L) is that the carbidopa keeps it from “converting” to dopamine until it gets into your brain.
Dopamine alone, in your bloodstream, makes a lot of people feel sick. Either way, if dopamine has toxic effects on neurons (some folks think it does) I imagine mucuna-pruriens would too.