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Thursday, February 18, 2016

A Parkinson's Symposium in Yuma

The APDA Power over Parkinson's symposium in my hometown of Yuma, Arizona, had been in the planning stages for months. A suitable venue had been booked. Email invitations had been sent out. Flyers were printed and handed out at our support group meeting. Members took extra flyers and posted them in their Doctors offices and in the clubhouses where they lived. The Yuma Sun newspaper ran a detailed story about it on the top of page A2 and continued to run a smaller notice in the "What's Going On" section every day. Public radio station KAWC ran a PSA about it. RSVP's were rolling in like crazy.

Everything was going great, until the day of the event. Two Parkinson's Specialists from Tucson would share their expertise with the Yuma medical community at a "professional lunch" event prior to the public event. I had provided a long list of area physician groups, neurologists, clinics, rehab places and even the Professors of the Nursing and EMT programs at the college to the APDA. Space had been reserved at a restaurant near the hospital. Lunch would be provided free. Everyone on the list was contacted and invited to attend. Guess what? Only FIVE responded! An endocrinologist and 4 non-medical staff from the rehab hospital. 

I live in this town. I know these medical offices close for lunch. The restaurant was near to their offices and yet, none of them wanted to learn anything NEW about Parkinson's. I felt bad for the visiting Parkinson's specialists, but we had a nice visit over lunch. Doctors are normal people when not at work, they tease, laugh and tell jokes! And then it was on to the public event.        

By the time we got to the venue, the parking lot was full and we had to park half a block away. All 150 seats were taken and the staff scrounged up some more chairs and squeezed them in around the perimeter of the room. 

Dr. Kathryn Bradley spoke first. She went to the University of Arizona Medical School in Tucson and did her Movement Disorder Residency at Vanderbilt University in Nashville, Tennessee, before returning to Tucson to work at the Center for Neurosciences. She gave an easy to understand presentation and answered lots of questions. 
Dr. Bradley

After a short break, Dr. Thomas Norton spoke. Dr. Norton is the neurosurgeon who did my DBS surgery and has worked at the Center for Neurosciences in Tucson since 1973. His presentation was a bit more technical, but after all, you can't make talking about drilling holes into peoples skulls humorous, can you? Well, I probably could!

He answered questions and then he got asked the one question that comes up at every Parkinson's seminar I've attended: What about medical marijuana?  

His answer was the same as all the others who've been asked. He's heard anecdotal stories, from patients, that it helps them with tremor, rigidity, pain and sleep issues, but that there hasn't been much clinical research done on it.

I spoke last. I told the people about our support group and that I had some of my Parkinson's Humor books for sale and it was over. The Docs headed back to Tucson and I came home and wrote this story. 

PS: Why isn't more research done on marijuana?
Even though use of it, either for medicinal or recreational purposes is legal in some US States, it is still illegal FEDERALLY. 

Why is this? Back in 1970, the US Government decided that marijuana (cannabis) should be declared a Schedule I substance. This classification means that it has a high potential for abuse and no accepted medical use. Because of this classification, the researchers don't want their grant monies rescinded, or face federal fines, so not much research is done. Getting the classification changed is unlikely any time soon, though researchers have been trying since 1972.

FYI: Here in Arizona, medical marijuana is legal with a State issued ID card, however, if you drive through a US Customs & Border Patrol check-point (they are on all the roads near the southern border) and they find your medical marijuana, they will confiscate it, because they are a Federal agency. 
YumaBev and Dr. Thomas Norton

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Monday, February 8, 2016

Disability Review: Do You STILL Have Parkinson's?

The last job I had was back in 2003. My step-daughter got me a job as a banquet server at the country club where she worked. If it hadn't been for her, they'd have fired me the first day. My hands shook too much to carry trays of food, pour wine or even refill the guests water glasses. I was a glorified busboy and not even good at that. I quit, much to their relief, after about three months.

I had given up trying to work in banking or do any kind of office work the year before. I could no longer write, my right hand couldn't use a computer mouse, and the pain in my upper back from trying to use my right hand was excruciating. As much as I wanted to work, I was physically unable to. I would have applied for disability benefits back then, but was told, "No diagnosis, no disability."

So, I kept going from Doctor to Doctor and finally applied for Social Security Disability on the same day my Parkinson's disease diagnosis was confirmed, September 11, 2007. My Wonderful Husband filled out pages and pages of forms because my writing was illegible. Medical records were requested from all the Doctors I'd seen since 1999, when my motor symptoms began to interfere with my ability to work. 

Stress makes Parkinson's symptoms worse and there is nothing more stressful than dealing with government agencies. We filled out all their forms, attached copies of all the medical records I could get my hands on, and waited.

The first denial letter came, with instructions on how to appeal their decision. We appealed, added more medical records, statements from past employers and waited. The second denial letter came, with instructions on how to appeal for a judicial hearing. I contacted an attorney and appealed, and waited. My hearing before a judge finally happened in April of 2009, and the judge ruled in my favor. She was friends with former US Attorney General Janet Reno, and had watched her Parkinson's symptoms progress, so she understood the disease. This is the end of the story, right? Wrong.

In February of 2012, I get my first Disability Update Report form. They want to make sure I am still disabled. They want to know if I am better or worse, and want me to list ALL the medical appointments I've had for the previous two years. More stress. Fortunately, I have a file with all my medical records in it, so by the time all my appointments had been listed, there were 27 of them. A few weeks later, I received a "We've decided that we don't need to review your medical records as this time" letter.

In October of 2014, the second Disability Update Report form comes in the mail. It is a carbon copy of the first one. We learned after the first one to keep all my appointments recorded on a computer file. Having easy access to a list reduces the stress for both of us. This time, we list 50 appointments and 7 surgeries. A few weeks later, I get the "no medical review will be necessary" letter. It's pretty obvious, I am NOT getting better and will NOT get better in the future.

Parkinson's is on Social Security's official list of disabling conditions considered severe enough to qualify someone for disability benefits. "Parkinsonian syndrome with the following signs: Significant rigidity, bradykinesia, or tremor in two extremities, which, singly or in combination, result in sustained disturbance of gross and dexterous movements, or gait and station." Maybe someone should also inform Social Security that Parkinson's is a chronic, progressive and degenerative disease with no cure.

I am writing this story to help all the others with Parkinson's disease who are receiving Social Security Disability benefits. You will most likely receive these Update Forms every few years, so start keeping a list of ALL your medical appointments to reduce your stress. 

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