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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