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jul

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About jul

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  1. European Parkinson's Therapy Centre

    looks wonderful. thanks for your report!
  2. Restore Gold

    Regarding RG, color me skeptical. I happen to live next door to a con artist/sociopath who touts herself as a great humanitarian and runs a profitable 510(c)3. Most charities/ministries are probably legit, but the genre attracts an outsized share of sociopaths. I've learned that one the hard way - I didn't even know what sociopath meant before I moved here! Still, good luck to all - we all want to preserve our precious brain cells - every single one!!
  3. Swamper's word-of-caution article includes this: We are not clear on whether Exenatide is having a neuroprotective effect, or simply stimulating a dopamine-based positive motor outcome. And this is why the scientific research community are saying that it is too early to be getting too excited by the result and making judgements about the use of Exenatide in Parkinson’s disease.
  4. Extreme muscle tension. Dystonia?

    Thank you for sharing. I have a much milder (but still really annoying) distonia. I will keep this in mind.
  5. Hi all, I'm in pretty good shape PD-wise for now. But I have made some positive moves. 1) I booked a trip to Paris. I wasn't sure how well I would fare, but everything was great! We got back last night. 2) I bought a nice bike. I got up early this morning and rode. Cheers!
  6. Parkinson Glove Experience

    This is a clever & interesting invention. I guess we will find out in the next few years how the product does. I wish the company that is developing the gyro glove best of luck!
  7. Living Large With Parkinson's disease

    I also greatly appreciate that folks posted & reposted this article.
  8. delaying meds

    Thanks so much for the input - there's a lot of confusing, sometimes contradictory info out there. Luckily, I have the option of taking things slowly for now. In the meantime, I bought a new bike yesterday.
  9. delaying meds

    Hello - While medications for PD can alleviate symptoms and increase quality of life, the medications often have side effects. My inclination is to delay medication as long as reasonably possible - I am wary of medications in general. Also, I read that Levodopa loses it effectiveness - that's scary. But i read elsewhere that's a myth! Right now, my symptoms are mild, but my neurologist said he will put me on the dopamine agonist Requip when the time comes. Should I jump on the medications bandwagon sooner for quality of life, or follow my instincts and delay? Are there any reasons at all to delay medications once the PD symptoms are stronger? I like exercise - I'm willing to try and control my symptoms with lots of walking and biking and more. I appreciate any insights whatsoever on these weighty decisions!! Jul
  10. is coconut oil good for pd?

    I don't have much experience with coconut oil, but I am suspicious that the non-fat craze has not been good for our brains. Guacamole anyone?
  11. Mucuna Puriens - A Herbal Alternative

    Hercules - I'm wondering how this is going 6 months out. Thanks for sharing!
  12. Zandopa (Mucana Puriens)

    Hello - I know this thread is a little old, but I have a question. Is there any evidence, one way or the other, that mucuna prurient loses its effectiveness after the patient uses it several years. That's the problem w Ldopa - I'm wondering if the whole herb (not zandopa) is known to have that problem. Apparently mucuna prurient is a very old treatment for PD in India, so chances is the long term effects are known. Thanks!!
  13. hiking ?

    I hiked Acadia - some of the more challenging trails - in August. I already had a tremor but didn't get diagnosed until October. I knew something had changed for me as a hiker. My leg muscles were noticably weaker even tho I've been climbing 10 flights of stairs most days at work. I struggled to keep up with my 13-year-old daughter & husband. On the steep parts I felt uncertain of my balance in ways I never had before. I worried I would lose balance and hit my head if I rushed to keep up. Just a few thoughts - In national parks there's always a range of trails to chose from. If you realize you need easier trails, you can do that. On many parts of the Appalachian trail, you might not have so much choice. Consider hiking poles if you have any balance issues. My sister & her husband, experienced hikers in their mid-50s, usually use poles. They say it's to preserve their knees on the way down and to help cross slippery streams. I've been using cheap poles from Target - no problems yet! I'll be interested to hear how your hiking goes - enjoy!
  14. https://twitter.com/neurocritic/status/805010393424793600 i hope the link works! I really tried to embed it!
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