We discussed medications, side effects, nutrition and occupational therapy. I was very honest and did not hold back about the depression and side effects. When I told Kate she said, "...you cannot help anyone unless you're honest…" I am still a little worried about what reaction I will get it when the episodes go up on the www.
Researchers who work with Patient Advocates In Research (PAIRs) have access to $10,000 grants from the Parkinson's Foundation. Bas has offered to allow me work with him and submitted the grant application.
A few days later, I was invited to A World Without Parkinson's which was held on June 1 at Convene in NYC and sponsored by the Parkinson's Foundation. Convene is a swank place with great food and coffee and each event participant gets his or her own iPad. With a click, the presentation you are watching is emailed to you!
Dave Iverson opened up the day by pointing out that there were no African Americans present and that there very few other minority groups represented. He also pointed out that from a socioeconomic perspective we were a privileged audience. A quick look around assured me that other than some interns and gradate students, I was one of the poorest people in the room.
The day was informative and hopeful, but at times a a bit over my head. When a photo from Parknson's TV flashed across the screens, Ray Dorsey introduced everyone in the pic including Jori and then Bastiaan Bloem gave me a shout out and asked me to waive.
Below are two memorable quotes from the day:
"Parkinson's
is a disease of subtraction... ...you must add to your life. And hope
addition is stronger than subtraction.."
Dave Iverson
"In the last 25 years the # of people with Parkinson's disease has
doubled. If Parkinson's disease was contagious we would have an
epidemic."
Ray Dorsey
End the silence
A special thanks goes out to Karlin from the foundation for inviting me.
I am selfishly very sad that Jori, my doctor, is returning to Chicago. She has spent more time with me than all the other doctors I have seen over the course of my lifetime combined. She treats me as a partner in the effort to control my disease. She has also introduced me to many people in the Parkinson's Community. This is a community in which I am starting to feel at home, which is an odd feeling for a man who has been an outsider for most of his life. Thank you Jori.
Jori, your child should play with his cousins and be spoiled by his grandparents. There is nothing more important than family. Enjoy Chicago!
A final word about this blog: It is honest and therefore, it may not be the best method of promoting foundations, companies and individuals. If you would like your information omitted, please let me know. I may write about my depression or my most recent battle with fatigue, which is causing me to fall asleep in public and while I have reached a place of acceptance, these issues may be embarrassing to you. If so, you know how to reach me.
For the foreseeable future, however, I am going to be honest, because as Kate said, "...you cannot help anyone unless you're
honest…" I love that woman.
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