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MusicMan

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Everything posted by MusicMan

  1. MusicMan

    Vitamin B3 ????

    Maybe I missed it, but there doesn't seem to be much discussion about the report on vitamin B3 and it's effect on PD. To me, it seems pretty remarkable that it may be greatly beneficial, but there's not much buzz... https://parkinsonsnewstoday.com/2018/06/12/vitamin-b3-may-prevent-motor-decline-parkinsons-study/?utm_source=PAR+E-mail+List&utm_campaign=c90727791f-RSS_WEEKLY_EMAIL_CAMPAIGN_DAILY_US&utm_medium=email&utm_term=0_62dd4fb5e3-c90727791f-72025897
  2. MusicMan

    Vitamin B3 ????

    I stopped taking it, based on the negative news...
  3. MusicMan

    Nilotinib clinical trial

    Has anyone here been a participant in the Nilotinib trial? According to UF, some have already participated in the 2nd trial and have finished the 9 months either on 300 mg, 150 mg, or the plaebo. If anyone has, can you give us your impressions.
  4. MusicMan

    Nilotinib clinical trial

    I backed away when they wanted to do 3 spinal taps over a 9 month period. Yikes! Even those on the placebo would be getting the spinal taps.
  5. MusicMan

    Struggling with family relationships

    I also often have fatigue, but I do tend to rally when I have to. I seem to always expect to have trouble, but once I'm engaged in an activity or trip I seem to do okay.
  6. MusicMan

    PD is not the end

    Don't know about that. I've had an easy, wonderful life. So fantastic that, when I got Parkinson's at 58, I said..."okay, that's a fair trade for having 58 wonderful years beforehand".
  7. MusicMan

    PD is not the end

    I was diagnosed 4 years ago. Been having a pretty good time since....
  8. MusicMan

    DBS and the future

    I asked my local MDS what he thinks will be happening with this disease in 10 years (being that I'm recently diagnosed) I was particularly interested in what he thought medicines would look like in a decade. He said that DBS is the more exciting direction that treatment is headed,...that it will be much more common, accepted, and helpful. Even for those in earlier stages of PD. As they do more and more of them, and more research is gathered from each surgery performed, that it will continue to get much better and more targeted to the individual needs. Of course, there is that whole COST issue... Pretty interesting, but still a bit scary to imagine having it done. Thanks all you "pioneers" who have gone before me
  9. MusicMan

    Vitamin B3 ????

    This is interesting. Unblocking the mitochondria buildup is what Niagen is supposed to do https://parkinsonsnewstoday.com/2018/08/03/mitochondria-transport-disruption-causes-parkinsons-study/?utm_source=PAR+E-mail+List&utm_campaign=5a1e1ce152-RSS_WEEKLY_EMAIL_CAMPAIGN_DAILY_US&utm_medium=email&utm_term=0_62dd4fb5e3-5a1e1ce152-72025897
  10. MusicMan

    Vitamin B3 ????

    I see you are taking 250 mg of niagen 3 times a day. The dosing I saw was for 250 mgs ONCE a day. You may be taking too much, and too much of most B vitamins can be bad.
  11. MusicMan

    insomnia

    I somehow survive on about 5 hours of sleep per night, and have for a very long time. I might awaken a 4 am, but I lay in bed calmly and have relaxing "dream-thoughts" and pass the time away until 6 or so. I go to bed at 11 pm and get up at 6 am, regardless of whether I'm asleep the whole time or not...I just don't worry about it.
  12. MusicMan

    10 good years???

    Probably the "10 good years" is an average based on ALL PD patients. Many aren't diagnosed until age 75 or so, and are already on the decline in general. 10 good years for them would be great! Remember, the average of 100 people age 75 who get 2 good years and 100 people 40 years old who get 20 good years is.....11! So, don't sweat the numbers. Exercise and stay positive.
  13. MusicMan

    Shot in the dark

    Start with a neurologist. For maybe $200 he/she can give you some insight on whether you should be worried or not.
  14. Diamond joins Linda Ronstadt as another celebrity with Parkinson's https://www.nytimes.com/2018/01/23/arts/neil-diamond-retires-parkinsons.html
  15. MusicMan

    PROTEIN WITH RYTARY

    I don't understand the difference between Rytary and regular extended release sinemet???
  16. MusicMan

    inhaled levadopa

    I've read that your body needs acid to activate the sinemet, and that taking things like Zantac, Tums, Pepcid, etc negates the absorption of levadopa. If that's not true, I'd love to know so I can take Zantac too!!!!
  17. MusicMan

    Trying Sinemet

    There's no "cut and dried" treatment for PD, but I think it wouldn't hurt to add it at the same time. I think it has slowed down MY progression, but can't prove it...
  18. MusicMan

    What drugs? supplements like inisine?

    I would highly question anything that says Azilect may cause you to fall asleep while driving. Ridiculous....
  19. MusicMan

    Music and Parkinson's Disease

    I'd be interested in hearing more...
  20. MusicMan

    inhaled levadopa

    Great! PWP will be able to eat protein high meals, maybe gain needed weight.
  21. MusicMan

    Rasagiline and other drugs

    I get brand name Azilect from Canada....$300 for 90 day supply
  22. MusicMan

    Are you happy with your PD healthcare

    It is what it is. There's no cure for PD, so it comes down to managing your disease the best you can. Here's the real problem.....Doctors in the USA want to make $250,000 a year (at least), so to do that, they need to see LOTS of patients........for as little time each as possible. A doctor can't spend TOO much time cradling each patient......they need to move on to the next patient. So, you are just not going to get lots of hands on care and concern for your condition. That's just the way it is.
  23. MusicMan

    Parkinson's patient abusing opioids?

    I was on clonazepam for about 4 months, 1/2 of a pill once a day. I ended up so screwed up from that small dose that it took me 6 months to kick it. I would say that if your mom is taking 2 pills at one time, that is a problem. This is the drug that Stevie Nicks (Fleetwood Mac) got strung out on. It has a very quick "tolerance withdrawal" effect.
  24. MusicMan

    Rasagiline and other drugs

    I think that Azilect has slowed my progression of PD, but have no proof of that. I don't notice any side effects. Start with .5mgs for 4 weeks, then up it to the 1mg....you should be fine.
  25. MusicMan

    Parkinson's patient abusing opioids?

    You don't mention how old your mom is. PD can be painful, so give your mom a break. Clonazepam is a BAD drug, and very tough to get off of. That may need professional involvement. The opiods are another matter. You need to find out how much she is taking. A few a day is not THAT big of a problem in reality. Lots of pills is a BIG problem. So you need more info.
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