Friday, July 16, 2010

Jamie Heywood: The big idea my brother inspired



It's three am and here I am with part of my family. October 7th of last year I had just finished my live setup for the 2.o Med conference in California when I went down with a grand mal seizure and once again I was in the Epilepsy World. After 13 years of dormancy, it was acting up again. Scary , huh? Yes, but what was different this time...The gentlemen setting on this stage, some of the men from PatientsLikeMe.com., were and are my backup family. After four years on their site and so few days without me logging in multiple times all day, they know me better than I know myself. I have often joked that when it is my time to pass on, Ben will know months in advance. The most important part of this family, is their heart...always there, always caring. I trust them above all else. Some day I will have to sit down and write about my experiences on PLM. There probably is enough for a very funny book. I have clowned around at night when no one else was posting or even up, just me and Mr.T, the moderator. When I have had questions about outside Parkinson's advocacy, I can and could always drop a letter to Jamie and the response would be, "What can I do to help. Pokie" After the seizure in October, I returned to the site from the hospital a week later to find an invitation to join a beta testing on their new Epilepsy site. I've Beta'ed the Moods Community which they launched on my Birthday and waited for me to sign on and surprised me with a picture of a rocket blasting off and a big on line celebration. When it came time for the 2010 Parkinson's Unity Walk, in NYC they sponsored our team, through me, with a huge donation. When I started with them they were just starting so we have grown and learned together and as I was talking to someone today and they said they could see the difference WE are making for chronic illness patients. In the past four years the shift has definitely been from doctor ego to patient needs. That "one on one" interaction is often much more important than medication of any kind. And I don't mean to put doctors down. I have had one of the best Neurologist ever in my estimation and hope to return to him as soon as I can travel to St. Louis for visits. We were, above all else, friends and he would always ask for my input and never over medicate. I neither want or need to be a zombie because of my medication. I have "X" amount of time left in my life and have no intention of spending it sleeping twenty four hours a day. Well, you get the idea, I hope. I am so proud to say I am associated with Patientslikeme.com and the crew there. I thank them for making everyday a new experience for me and showing the World just how important a social health network is towards finding a cure and furnishing a better quality of life as w suffer through......thanks again, Love always Pokie

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