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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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  1. I just wanted to compliment you on another beautiful, touching blog. Thank you for sharing your life and thoughts so candidly. I know it helps so many readers. For sure, it helps inform me to be a better social worker. Anna

  2. Bev, your blog hit home with me! I lost my Dad (who had PD) to a stroke...eight years ago? I try not to remember, it was so hard. I have a few pre-PD symptoms, and I watch myself carefully. Your words bring me closer to you, thanks!

  3. I, also, was not aware until my diagnosis less than a year ago! Thanks to you and others, I have learned volumes! Now I know I have had symptoms for the past 5 years! Hard to believe that I am a retired RN!

  4. Mario's mom here: This is a very interesting post for me. My husband has PD, and I was also diagnosed with it. After trying the med for 9 months and having all sorts of problems, i went to a "Movement Disorders" specialist who specializes in PD. MS, etc. You might be interested in my blog

    That doctor gave me a DaTScan, which proved I had Essential Tremors - not Parkinson's. Unfortunately, my husband still has PD. Maybe there is a Movement Disorders specialist near you.

  5. I love to read your blog you have a wonderful way of bringing information to us all thank you x

  6. This is a wonderful blog Bev. It is amazing how much you learn from others and by reading. As you did, I always thought Parkinson was just shaking. I know better now and I know a lot more then my GP does for sure. We must keep fighting any way we can. Thank you Yuma Bev!!