Yeah, there’s no way around it….we still don’t have a cure. Parkinson’s sucks
Robert Cochrane, PhD
Think back to when you were first diagnosed. Were you shocked? Scared? Embarrassed? Afraid to tell anyone? All of the above?
So often, peope with Parkinson’s are more worried about the stigma of PD. Yes, the stigma. Why do we feel embarrased? Maybe it is the image of Parkinson’s that has been around for over 200 years. The older man hunched over, shuffling his feet. Can you identify with that? I couldn’t. I was a woman in her late 50s, looking relatively healthy except for that tremor that always acted up at the wrong time.
World Parkinson’s Awareness Month
So this month, we all need to get out and educate others about Parkinson’s Disease. Not just the clinical details, but what it is like to live with a chronic disease that has at least 57 possible symptoms, maybe even more. We don’t do enough to educate others, our doctors included, about how Parkinson’s affects each of us AND how it affects our family and friends.
Parkinson’s is the fastest growing neurological disease, surpassing Alzheimer’s Disease for that distinction. The number one risk factor for PD is aging. As our population ages, the risk becomes even greater. What is that going to cost us, our families and our government as more and more people require medical care for PD?
Some suggestions for Parkinson’s Awareness Month
- If you live in California and could not go to Sacramento today to meet with your state representatives in person, you can still make your voice heard. Start by contacting your assemblymember and senator about Senate Bill 895 (state research funding bill) in lieu of attending the Advocacy Day. To learn more about the issues and what you can do to help, click here to acess more information. It will automatically populate with your representatives’ information, so that you can contact them directlly.
- Educate yourself about Parkinson’s Disease. There are a lot of good books that have recently come out that can help you better understand what the future will bring. Two new recently published books that I highly recommemd are Sara Whittingham’s Oh Crap: It’s Parkinson’s and Steve Yellen’s Living Parkinson’s. The more you learn, the more you can share.
- Educate someone else about what it is like to live with Parkinson’s. Explain how they can support you now and in the future as the disease progresses.
- Tell your story. As Dr. Michael Okun explained to our group a few months ago, your story is a powerful tool in fighting PD. It doesn’t have to be your entire life history. Share it with others so that they can understand better what it is like to have PD.
- I am collecting your stories to share on these blog posts. It can be prose, a poem, haiku, a cartoon., collage, video. Any form that you are comfortable with.
Sharing our stories
The feedback on the stories that I have published so far has been amazing. One thing that I keep hearing is that you see yourself in other peoples stories. That you are not alone. Please continue to send stories to me at twitchywoman18@gmail.com
Here is my story, written a few years ago. (warning, it has not been updated for several years)
The Accidental Advocate
It was never my intention to be an advocate for women with Parkinson’s disease (PD). I just started writing a blog, Twitchy Woman, to help people who were newly diagnosed by giving them some resources and tricks I had learned living with the disease for 5 years. The accidental advocate gradually emerged.
I stumbled through the first year of the blog, trying to figure out what direction I was going to go with it. Fortunately, 6 months after I started writing, I attended a conference called The Women and PD Initiative, that was offered by the Parkinson’s Disease Foundation (now the Parkinson’s Foundation). I was excited to be part of this exclusive group of 25 women with PD, many of whom have since become movers and shakers in the Parkinson’s world.
After two and a half days of learning from many experts about women and PD, we were charged with doing something for women with PD when we returned home.
Continue reading here:
The Boys of Summer Shortstop
Yesterday, Robert Cochrane, PhD., held a screening of his documetary film Boys of Summer Shortsop, for Twitchy Woman, followed by a discussion about the film. The film follows Robert”s adventures visiting baseball stadiums around the country with his young son and his father who has Parkinson’s. This is the third film in the series and there are mjultiple screenings this month, leading up the the premier of the 4th film in the series at the World Parkinson Congress in May. Here is the recording of our meeting (without the actual film) and the discussion afterwards. For more information go to http://www.bosmovie.com
Have a great week
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