Muhammad Ali: The Fight He Could Not Win

Yesterday evening, June 3, 2016, I heard the sad news; Muhammad Ali had lost his fight with Parkinson's disease. It had been a very long bout, 32 years long. He had fought a good fight, had always maintained his dignity and he's now at peace. I'm not sure he really lost, I think I would call it a draw.

I credit the Muhammad Ali Parkinson Center in Phoenix, Arizona, for this Parkinson's Humor blog I write. I never met the man, or visited the center named after him, but the staff came to Yuma at the end of March, in 2011 and put on a two-day seminar they called PD-101. I still have my big binder.

I learned more in those two days than I ever heard from my Doctors. I first heard the term "Parkie" at that seminar and I loved it. There were several people with tee-shirts that said "Have you Hugged a Parkie Today?" This made me decide to become a Happy Parkie. 

I also found out Yuma had a support group, which I joined and now lead.

I learned that being wide awake in the middle of the night was a common medication side effect and that there were chat rooms dedicated to Parkinson's where you could talk with other Parkies. Finding one of these chat rooms changed my life. I connected with Parkies from around the world and one in Australia, Karyn, suggested I write down the funny stories I would tell in the chat room and share them online. Hence, this Parkinson's Humor blog was born. 

I actually had an appointment, once, to see a Movement Disorder Specialist (Dr. Santiago) at the Muhammad Ali Parkinson Center. It took several months to get in and my appointment was for January 6th. Unfortunately, in December, my Medicare Advantage provider decided to drop the Muhammad Ali Center from their list of in-network physicians. Without insurance coverage, I could not afford to go and cancelled my appointment. 

Thank you, Mr. Ali, for all you did to help raise awareness of Parkinson's disease, and thanks to the Center named after you for changing my life. Rest in Peace.

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YumaBev becomes the Top Banana

For the last couple of years, I have been attending our local Parkinson's Support Group meeting. I am the youngest member and the silliest one, too. In January, our current leader, Greg, decided to step down and asked me to take over the group. I said yes and within an hour or so, all the official paperwork was done. So, now I was the Top Banana and even had the costume to prove it.

February was my first official meeting and mostly I just gave people information about upcoming seminars, what to do if you have to go to the hospital, the dreaded "exercise is best" talk and threw in some laughs as well. 

NPF's Aware in Care Hospital Kit

At the March meeting, I played my before and after DBS videos and we all sang along to my song parody called Winter Wondering. 

I try to keep the meetings upbeat and informative; this time handing out flyers for a little known benefit that might help some of our Parkies who are Veterans, and another about a USB Medical Bracelet from the Muhammad Ali Parkinson Center. 

I'm hoping to get the Mayor of Yuma to come to our April meeting and personally bring the Parkinson's Awareness Month Proclamation. And after that, who knows. Most of our members will be heading back north soon, but the rest of us will find something to do over the long hot Summer. 

You can find all my videos on my YouTube channel:

https://www.youtube.com/user/ParkinsonsHumor

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Breakfast with Dr. Santiago

Dr Santiago with the Yuma Parkinson's Support Group

On Wednesday morning, August 29, 2012, about twenty of us from the Yuma Parkinson's Disease Support Group had a breakfast meeting with Dr. Santiago. He is a highly respected Movement Disorder Specialist (a doctor who specializes in Parkinson's), researcher and teacher, based out of the Barrow Institute at the Muhammad Ali Parkinson's Center in Phoenix, Arizona (one of the NPF's Centers of Excellence ) and well loved by his patients. 


As he talked, I realized why his patients love him. He is kind, compassionate, and has a sense of humor; joking about his height (or lack of) and his Sicilian ancestry. My Wonderful Husband is also Sicilian, so he scored a few extra points right then.

Dr. Santiago

I actually had an appointment with Dr. Santiago on January 6, 2012, but, unfortunately, my insurance coverage changed on January 1st and he was no longer on the "list" of Doctor's I could see, so I had to cancel the appointment. I guess the insurance companies know best (yes, I am being sarcastic).

I was quick enough with my camera to catch, in my opinion, the most important thing he said as he talked with us and here it is. (click > to play)

As he answered questions from our group about side effects, blood pressure and pain problems; I came to the realization that most of the doctors we see don't know much about Parkinson's disease, but many think they can adequately treat it and that can make our lives miserable. Even most general neurologists know very little about the complexities of Parkinson's. I guess that's why you hear the term "practice" when it comes to the medical profession.  

A woman, new to our group, was just told that she has Parkinson's disease by a primary care doctor assigned to her by the hospital where she was undergoing heart surgery. Yeah, that makes sense. Add a bunch of stress to someone who is in the hospital for heart problems. Dr. Santiago listened to her, hugged her and said "Get a second opinion from a Parkinson's specialist." He scored a bunch more points.

I am my own advocate. I learn all I can about my disease. I know when my medications are to blame for my symptoms and push my doctor to fix it, and not necessarily by adding even more medication. You need to be your own advocate, too. If you think a medication is causing problems, speak up, loudly. And if your Doctor doesn't listen to you, find another one. It's too bad we can't copy Dr. Santiago and give one to every Parkie who reads this, we'd all be Happy Parkies.

So he wouldn't get bored on the three hour ride back to Phoenix, I gave him a copy of my book and a CD of my Parkie Songs. I wonder if he's singing "Laughing at Parkinson's" today? 

Dr Santiago and YumaBev

You can find all my videos on my YouTube channel:

https://www.youtube.com/user/ParkinsonsHumor

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