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Thursday, July 17, 2014

Parkinson's Humor: Three Years Later

July 17, 2011 was the date I started this Parkinson's Humor blog. Those three years have flown by. I am still amazed that people read my stories and even more amazed they come from all over the world.  

The red dots represent where my readers live

I am still friends with the first people I met in a Parkinson's Chat Room.  Karyn from Australia, who convinced me to start this blog and helped me decide DBS surgery was right for me. Steve and Linda from Kentucky, who headed up the chat room and Andrew from Australia who still has his pet snake named Pelorus. But, I have only met one of them in person; Mary L from Mississippi, who
YumaBev and Mary L in New Orleans, LA
arranged for me to be the guest speaker at a Parkinson's disease conference in New Orleans in April 2013. I've met several other Parkies that I have interacted with online at conferences in Southern California and Phoenix.  

YumaBev and Kip from Nevada

YumaBev and Michelle from Louisiana

Mick from Arizona and YumaBev

YumaBev and Roy from Florida

Davis Phinney and YumaBev
YumaBev & Laurie from Canada

Some things have NOT changed. My hair style is still the same except for some "wings" trying to grow out
YumaBev's wings

from the DBS surgery. I still use the same ancient desktop computer, which I hope lasts forever. My mouth still hangs open when I watch TV. I still wear Velcro sneakers. I still like to laugh and make others laugh. My Wonderful Husband is still wonderful.  

And some things have changed. My right foot no longer dances under the desk when I am trying to write.  I sleep later, have missed many sunrises and I've gained a few pounds. I walk more normally. My singing voice has gotten worse (I know, it's hard to believe, but it's true.) My voice has gotten quieter (I know, hard to believe, right?) and some times my speech isn't very clear, but I keep right on speaking. In fact, I've been invited back to speak to Dr Sherman's first year medical school students in November.

All in all, I'd say I am doing very well. I am looking forward to the next 3 years and hope to meet many more of you in person.

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Thursday, July 10, 2014

Knowledge is Power with Parkinson's Disease

Today, July 10, 2014 marks the 11th anniversary of my Father's death. Even though he didn't die of Parkinson's disease, it was a huge contributing factor. 

Back then, I didn't understand when the staff at the hospital said, "Parkinson's makes everything worse." I didn't understand that his dementia may have been caused by the many different medications he was taking. I didn't understand why he seemed to have lost his sense of humor. Why he no longer made witty, sarcastic quips. Why he no longer laughed like he used to. 

I didn't understand why it was painful for him to put his arms behind his back to put on a jacket or raise his arms above his head to take a tee shirt off. I didn't understand why he would just sit and stare off into space when he used to love to play golf or read books or go to shows and plays. I didn't understand why his nose would run or why he'd sometimes drool on himself and not seem to even realize it. I didn't understand how he could fall just by turning around in the kitchen. I DO NOW.

Back then, I didn't understand a lot of things because I didn't know much about Parkinson's. I only knew that people with Parkinson's had shaky hands. That was it. I knew nothing about the rigidity, slowness, cognitive problems, facial masking or balance issues. I was totally clueless

Heck, I didn't even realize, way back then, that I already had Parkinson's disease myself, for at least 5 years. I remember asking my Father's neurologist, if maybe my problem with my right hand was Parkinson's and his reply, "Don't waste my time, your problem is orthopedic not neurological." He was totally wrong and it makes me wonder, just how much about Parkinson's HE knew? 

The point of this story is knowledge is power. As a Parkie or their care-partners, you need to learn about this disease. You need to know that Parkinson's will even make getting over a cold take longer. You need to know that the medications we take can have serious side effects and that other medications can interact with them as well. You need to keep learning and fighting and laughing and forcing yourself to keep moving and interacting with others. If you don't, then Parkinson's will win.

I miss both my parents every day, and I have photos of them on my walls. When I look at their smiling faces, I remember the good times. I will not give up, I will not give in, I will not hide in the dark. If I can still do it after having this damn disease for more than 15 years, you can to. 

YumaBev's Mom and Dad

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