A Facebook Post-of-the-Day: My Call to Action

HEY, over here. Yeah, YOU, my FB friend who might know me through some shared aspect of our professional or personal life. If you didn’t know it before, you are going to know it now: I have PARKINSON’S DISEASE (PD). Why am I telling you this? You need to know that, if you didn’t already know it, lots of people are living and struggling and working WITH PD. Including me.

There are predictions that, as the population ages, there’s going to be an EXPLOSION in the number of people affecting by PD. It’s not just people in nursing homes. It’s not just Michael J. Fox or Muhammed Ali. It’s some people, like me, who take their medication and exercise in ways that allow their motor symptoms to be hidden or parts of disease progression to be slowed.

But meanwhile,  whole chunks of my life are changed by PD. PD affects my ability to think as quickly as I used to think. PD affects my ability to stay awake past dinner or do anything social, if it will end after 7 p.m. PD affects my ability to swallow or be away from a bathroom for very long. PD directly affects my relationship with my family, and not in great ways. And now and then, my medication –for some reason I don’t understand– doesn’t work. And my body tremors violently. And every muscle in my body knots up. And the pain is not something I want you to ever have to experience. I cannot move at all.  Frozen.

Everyone living with PD has a somewhat different constellation of symptoms and shows them in different patterns. It’s really a syndrome, not a single disease.  There are multiple causes and multiple symptom manifestations. That’s why there won’t likely be a single path to a cure.

And you might have heard the line: “Parkinson’s disease doesn’t kill you. You have to live with PD.” It’s not true. It kills many of us. My Dad died from PD.  It’s right on his death certificate.

So, now more: Why I am I telling you this?

FIRST, so that you can ask me questions about Parkinson’s Disease and know that I will tell you what I know. SECOND, so that, if you have any ‘connections’ who can write big (or not so big) checks to organizations that support Parkinson’s Research or who can lobby somebody in Congress for more federal funding, PLEASE HELP ME to STOP PD. THIRD, help me to help myself and others with PD by copying and sharing (or forwarding) this post.

If you are my friend, please do that. If you are also another person living with PD, feel free to copy and edit this post, to express your own experience of living with PD. Some of us aren’t mobile and can’t organize in quite the same way that people who have/had HIV did.  But the message can still be ‘marched’ electronically. Thanks for reading. Now, please, do something more.

Karen Raphael    Brooklyn, NY, USA

Originally published on my Facebook Homepage

January 24, 2018

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Karen Raphael

I've lived as a PwP for about 8 years and shared with my siblings in the care of my father who also had PD. He passed away two summers ago at age 91. I am still working f/t as a Professor and Clinical Research Scientist in an area unrelated to PD. I hope that my training in epidemiological and clinical research can help others to understand how the clinical research literature can be translated for personal use (or not). I first became deeply symptomatic and unable to take a single step, trekking toward Everest Base Camp about 8 years ago. Even in my 20s, I experienced hour-long episodes of bradykinesia. So I am a weird young/older onset Person with Parkinson's. When not working on my research or working out HARD in the gym every day (go for neuroplasticity!), I hang out with my partner/spouse in Brooklyn, NY, with my older son and very old and still-happy dogs.

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