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  • Did you celebrate Parkinson’s awareness month?

    Posted by Mary Beth Skylis on May 16, 2022 at 1:43 pm

    April is Parkinson’s awareness month, which is a great opportunity for the community to come together to fight the disease. I spent it learning about new technology, and potential treatment options. Did you celebrate Parkinson’s awareness month? If so, what did you do?

    Ally replied 1 year, 11 months ago 4 Members · 6 Replies
  • 6 Replies
  • Ally

    Moderator
    May 31, 2022 at 6:58 pm

    I’d love to know more about what you learned, Mary Beth! Could you share a few resources or links?

    • Mary Beth Skylis

      Moderator
      June 2, 2022 at 11:08 am

      Sure thing!

      I spent quite a bit of time learning about Neuralink (a brain-computer technology that Elon Musk’s team is working to develop for movement disorders and paralysis): https://neuralink.com

      There are a few competitors that are out there, too. Synchron Inc just went to human trials, outpacing Neuralink by about a year. https://synchron.com

  • Barbara

    Member
    June 2, 2022 at 4:59 pm

    I checked with my library and discovered the few books they had shelved under Parkinson’s were either  out-of-date or not really pertinent, so I made an appointment with the person responsible for the PD section. I had a list of suggestions including Parkinson’s Diva, book written by a PD neurologist who then was diagnosed with Parkinson’s; she wrote from a woman’s POV. Excellent. We collaborated, and four books (printed 2020) have been ordered. Also next April, there will be a Parkinson’s table display and write-up in the library newsletter. I do realize that the Internet has unlimited access, but the library will also provide individual information and a good amount of PR. Have you checked your local library?

    • Ally

      Moderator
      June 8, 2022 at 7:54 pm

      That’s awesome, Barbara! I’m sure your effort and advocacy will help someone else the next time they’re at the library looking for resources and good for you for planning something for next April, too. I love my local library. What great ideas!

  • Krukar

    Member
    June 3, 2022 at 2:15 pm

    We were super blessed to be a part of the 30 day campaign. I was featured in day 4 and then my wife Fraya and I had an on-line interview with Ally.

    When I spoke with my old pal Tim yesterday about my condition he said that it can give us renewed focus….and it has.

    My life must be more than just my illness.

    Also as a result of all these shootings I have begun my own campaign of calling my legislators asking them to advocate for gun control.

    I really think it is all about taking my power back using multiple methods. Through exercise , medication communication etc. it has been possible for me to fight the demon that is Parkinson’s. Thank you for the campaign. Blessings, Mike

     

     

     

     

    • Ally

      Moderator
      June 8, 2022 at 7:56 pm

      Mike, it was so great to chat with you and Fraya in April. I’m glad to hear you’re reaching out to your elected officials about gun control, too. The news recently has been absolutely devastating. Thank you for channeling your energy into such a good cause.

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