Parkinson’s: IQ+YOU
Snarky Parky & me
Have you been to a Parkinson's Event? They are fun, you get to meet other people in the Parkinson's Community and they give you a lot to think about.
Last Month, Steven and I drove to Cleveland to go to the Parkinson's Foundation and the Cleveland Clinic's “Empower U” Event. It was the first time we had been to an event for Parkinson's. We had a great time.
This last Saturday we drove to Columbus to go to the event presented by The Michael J. Fox Foundation's “Parkinson's IQ + You”
The Parkinson's Foundation event was focused on the welfare of the individual. The Michael J. Fox event was focused on research and the end of Parkinson's. Both were wonderful. And amazingly, everything was free, from the event, to the parking, to breakfast, lunch, snacks and drinks .
The first one was carefully designed for the comfort of people with Parkinson's.
From the free valet parking, (so you didn't have far to walk)
to the short sessions in breakout rooms, that had generous time between them so you could use the restrooms or get something to eat or take your medicine,
to the food that was available all day, (to fit your eating schedule)
to the exercise classes that were offered between each education session
It was a lovingly crafted event for the person with Parkinson's.
The Michael J. Fox Event, had everyone in the same, large, conference room and you stayed there the whole time until it was break time or lunch time. I found it difficult to sit still that whole time.
But I was very moved by their choice to include as guest speakers, people who had Parkinson's and their care partners. The moderator was Jimmy Choi, He told his story first. “Diagnosed with young onset Parkinson's disease at age 27, he did nothing for the next 7-8 years to manage his Parkinson's. By 2010, he only walked with a cane, and hit rock bottom when he fell down a full flight of stairs while carrying his young son.” He held his son above his body and managed to keep his son unharmed. “Fear of the future and fear for his family made him vow to take back control of his life. Physical therapy led him to running and other activities that helped both his motor and non- motor symptoms. In 2012, he ran his first marathon.”
“In the last 5 years, he has competed nationally as an American Ninja Warrior.”
“Jimmy has participated in many clinical trials to further research on better treatments for Parkinson's. As a Parkinson's advocate, he serves as a Patient Council Member for the MJF Foundation for Parkinson's Research and a board member for Rock Steady Boxing.”
"He showed the world that Parkinson's will not stop him. And inspired many more to not let a diagnosis define them.”
On Saturday, he was a wonderful Moderator, who was relaxed and funny and asked insightful questions of the guest speakers. Jimmy you definitely were a 10!
(Jimmy had impishly suggested to us that when we received the survey from the Foundation to mark the moderator as a 10.)
The goal was to give us information about the latest in PD Research and Care.
They also showed a short film about what has been accomplished by the MJF Foundation over the last year. I cried through the whole thing, I think because of all the work done, by so many people with Parkinson's and the huge amount of money that they raised for research. And because there are now many reasons to hope that we will see the end of Parkinson's.
There is still much work to be done. More research volunteers are needed. If you want to learn more, you can get a Trial Participant Pack that has an easy-to-use guide and videos featuring people with Parkinson's and their loved ones. michaeljfox.org/Participant Pack
“ Fox Trial finder is a new online tool that helps patients and their loved ones get involved in research by matching volunteers to the trials that need them.” www.foxtrailfinder.org
You don't have to be a research volunteer to help. (I am a chicken, it is hard enough for me to agree to take another much needed, FDA approved medicine on top of what I am already taking.) There are many ways we can help in finding a cure for Parkinson's.
Next week. I will go into some other ways we can help, and some local support groups, (particularly one that looked totally cool) and some helpful classes that I picked up a ton of brochures for at the Partner Expo.
Take care,
Nancy and the Snark
P.S.
In the crowd, I saw a face I knew! Karen was there, a friend from Pam's Harmonica and Speaking With Purpose, Zoom classes. We had the chance to hug and to speak to each other. Hope you had a good time too Karen!
Just now I finally caught up on your blog, and did not see a follow up post about local support groups. I'd love to know more, in case my mom would be interested in one.
ReplyDeleteThat also reminded me that I swear I had a conversation with one of you about meeting the other. I'd love to take you both to lunch one day.