• This topic has 6 replies, 4 voices, and was last updated 1 year ago by Ally.
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    • #23835
      Mary Beth Skylis
      Keymaster

        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?

      • #24125
        Ally
        Keymaster

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

          • #24136
            Mary Beth Skylis
            Keymaster

              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

          • #24138
            Barbara
            Participant

              I checked with my library and discovered the few books they had shelved under Parkinson’s were either  out-of-date or not really pertinent, so I made an appointment with the person responsible for the PD section.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?

              • #24159
                Ally
                Keymaster

                  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!

              • #24142
                Krukar
                Participant

                  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

                   

                   

                   

                   

                  • #24160
                    Ally
                    Keymaster

                      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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