After my last post, I started thinking about the support network we have built because of the people we have met while attending the Kripalu Wellness Retreat, the Partner’s in Parkinson’s event and the Grand Challenge meeting. The more I thought about them, the more I realized how every one of us has been impacted differently by the many symptoms of PD and how we hunger for information from each other. As Bill Wilkins said in Atlanta, I can meet a person with PD and immediately strike up a conversation and that conversation often gravitates to questions like:
- When were you diagnosed?
- What symptoms do you have?
- What medications are you using?
- How are you dealing with….?
- Do you belong to a support group?
- What kind of exercise regimen do you follow?
In the past year we have met many other PwP’s, care partners, researchers, representatives of organizations supporting Parkinson’s patients and others involved in Parkinson’s care or research. And I have realized how many everyday heroes we have met, for example the couple whose son was diagnosed with early onset PD and can no longer work, or the school teacher who had to retire because she lost her voice, or Soania who was diagnosed at 27 as she was just starting her medical career and now writes a blog for about.com health including one about another hero we met, Steve, who has come up with an innovative way to transport PwP to clinical trials, or Saul from Atlanta whose daughter / care partner was diagnosed with MS and Sandra who started our local support group because she saw a need and many, many more. All heroes in my book.
Then there are the many people we have met that work or volunteer for the Michael J Fox Foundation (MJFF) or the Cure Parkinson’s Trust (CPT) or the National Parkinson’s Foundation (NPF) or Parkinson’s Disease Foundation (PDF) or Brian Grant Foundation (BGF) or Parkinson’s Action Network (PAN) and others. These individuals are dedicated to the cause of finding a cure for PD and they are passionate about it. Some have PD and some have relatives or friends with PD but they all want to be involved in research or fund raising or developing educational materials or advocating on behalf of PD patients at the state and national and world levels. They include Tom Isaacs whom I mentioned in the last post and Jon Stamford of CPT, Claire and Claudia from MJFF, Joyce from NPF, Steve and Linda from PDF, Bill of the Wilkins Foundation, Brian Grant from BGF (duh), and Israel from PAN.
And while we didn’t meet Michael J Fox, I know I am not alone in viewing him as a hero, in fact, he was just selected as the first WebMD Health Hero Hall of Fame winner for his significant accomplishments, both personally and through his foundation, to raise awareness, expand funding, develop treatment options, and advocate for patients in his tireless quest to find a cure for Parkinson’s disease.
And there is the online community which includes some of the same people I’ve already mentioned that I follow on Twitter along with Robert who writes the blog Tremors in the Universe and has just published a book of the same name with part of the proceeds going to MJFF and NPF, and Grove who represents PAN for the State of Idaho and Kaitlyn whom we first met at Kripalu and many, many more. Again even more heroes.
These are just a few examples of the many dedicated PD advocates I have met in the past year. I could easily fill several more pages with examples of the people we have met and the actions they have taken to live with Parkinson’s or help someone else live with PD or the research they have done to find a cure, or the actions they have taken to raise funds for research and education and they are all everyday heros.
Finding a cure or even a way to slow the progression won’t happen without this patient involvement and advocacy. As Tom Isaacs said in Grand Rapids, “We must make patient involvement the rule, not the exception.” He found that PwP’s who are involved in any constructive way benefit from an improved sense of wellbeing and fulfillment. Being able to go to Kripalu and Atlanta and Grand Rapids has resulted in having expanded my network of supporters and increased my understanding of PD. My online community helps me stay current on PD news, new medications and therapies, how others are dealing with the many symptoms of PD and provide me with another support network.
We plan to keep on traveling to Parkinson’s events while I still can and we will continue to be advocates for PD. This includes advocating for increased patient involvement in all aspects of PD from clinical trials to pushing for increased funding for PT & OT visits and for changes that will allow PwP to take or get your medication on time while hospitalized.
I am honored to report that my last blog post – Increasing Patient Involvement – was featured on the Parkinson’s Movement website! Thanks for reading, and if you tuned in to find out about brewing beer at home, maybe I’ll get to that one next !