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Thursday, August 30, 2012

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
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