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jul

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jul last won the day on July 4 2018

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About jul

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  1. jul

    Mired in Muck

    This is not a political forum - but politics have consequences. Who here wants to leave a polluted world to their kids? Who here thinks dirty water & air are a-ok for PD patients? Nobody. Meanwhile, our govt has been on a tear - reversing all sorts of environmental policies. But with the daily on-slaught of news, it's easy to miss. Pay attention or get played!! Here's just one article - link. Done.
  2. jul

    Dystonia

    I like Merrill Encore link
  3. Cooking - because it's fun to find and try new recipes. And it's healthy and cheap! In the winter I like cooking soups. Also, most vegetables are delicious roasted - and it warms up the kitchen nicely. Roasted brussel sprouts, carrots, onions, caulifower are all incredibly delicious!
  4. Hi - as soon as I was diagnosed with PD, I was on the internet trying to figure out how to slow progression and preserve those precious brain cells. I'm not a doctor, and everything I read on supplements and what not was just confusing. My new(ish) neurologist (at a PD specialty center) says basically no one knows what slows progression. He put me on Azilect because there is *some* evidence it slows PD. And, of course, he notes there is clear correlation with exercise and slower progression. If your medical expertise allows you to discern supplements or anything else likely to slow progression I'm all ears!
  5. jul

    Vitamin B3 ????

    Are you all still using this? If indeed it might slow progression of our PD, it's a bargain. Thanks for providing the information!
  6. This is a really interesting article. Here's another one by the same researchers https://www.alzforum.org/news/research-news/lysosomes-take-center-stage-parkinsons-and-frontotemporal-dementia. The comments at the end are interesting. Here's an article from 2018 w a picture of Dr Krainc - https://news.feinberg.northwestern.edu/2018/05/early-synaptic-dysfunction-found-in-parkinsons-disease/ It has more about the toxic effects of oxidized dopamine.
  7. Years ago i suffered from pretty bad insomnia. i didn't want to take drugs for it. acupunture worked really well for my sleep problems. (placebo says my husband - I say, ok, I'm happy with placebo if it lets me sleep!) I would assume that acupuncture can help with PD symptoms. i kinda doubt it can slow PD progression except possibly by contributing to overall energy and health.
  8. jul

    Tremor when nervous?

    I resisted taking the meds because of some things I had read. My neurologist talked me into them. I am very happy - tremors are almost gone, my hand no longer feels like clay, I type better, I walk better, I have more stamina. Tremors do return when I am stressed, but the tremors aren't too bad.
  9. Hi Maral - I also thank you for sharing. Please take extra good care of yourself - it is what your husband would have wanted for you!
  10. I am interested in learning about anything that helps dystonia
  11. Is the retreat appropriate for people in the early stages of parkinson's?
  12. My local Y has a lot of classes. I try to mix it up. Cycle classes are great because it's easy to get a good workout without hurting yourself. At the same time, you can choose to hold back and go at your own pace. If I walk in the door of the cycle class, I'll do a vigorous workout for an hour. At home, chances are I would quit after 15 minutes. There are also cardio, zumba, step, and kick boxing classes that to me seem to be good for coordination and using lots of different muscles. It is super important to prevent injury - you can put yourself out of commission for weeks! I am not trying to work out to 100% of my ability. I figure 80% more days a week is better.
  13. This is good advice, but I am a little wary of the herbs. what does your doctor think of the herbs? thx!
  14. I've become something of a gym rat. This was a less good week - I only made it to the gym 4 times (work was insane). My eating has gotten worse because I don't feel like cooking when I come home. And my house is pretty messy. Sometimes when I'm in spin class or yoga class or whatever, I just feel thankful for what my body is able to do. I wonder what lies in store but hope for the best. My neurologist said - if you come through my door the diagnosis you want is Parkinsons - we know how to treat it, you might be lucky and have slow progression. So... may all of us be lucky!
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