Stories

James

Blessed Every Step of the Way

Diagnosed at 43

October 31, 2005, after going without medical insurance for some time, I landed a great job-401K, full medical, vacation, and PTO. I chose a general practitioner at the time and he was treating me for an infection on my hind parts and I was urinating quite a bit so I was wearing Depends undergarments. The doctor game me antiobiotics for the infection and I came back for a follow up about a week later.  At this point I was having difficulty with balance and slurring of speech, and while on the follow-up at the doctor's office, I must have urinated 15 times in 30 minutes. She sent me to a neurologist who ran tests for Chorea, Myoclonus, Huntington's, even MRIs along the spine to look for damage because I had a couple of accidents as a youngster.

I moved to Dallas, TX and received a consult with UT Southwestern Medical Center - Movement Disorders Department. The medical staff thought it may be cervical dystonia with involuntary tremors. I went to work at a museum in Plano, TX and began having more difficulty with balance, dropsies, involuntary tremors through the entire body, bouncing off the wall, headaches (which had always been present), and the neurogenic bladder. The family decided I should return to Nevada after I collapsed on the ER counter at Methodist Hospital in Dallas. When I returned to Reno, NV, my oldest sister let me stay at her home, when on Christmas Eve of 2007, I was admitted to the ER of Renown Hospital, this time for the urinary swelling.

In 2008, SSA found me disabled with cervical dystonia with involuntary tremors. Since I am a Veteran of the United States Army, my sister admitted me to the ER of the VA Hospital in Reno where my life has been slowly but steadily changing. In the eight years that I have been disabled, there has only been one medication to relieve my involuntary tremors for a day and that is Sinemet. I've taken 15 or 20 different types of medicines, but Sinemet is the "gold standard." My neurologist at the VA got me orders for the PADRECC in San Francisco. I've been going to the PADRECC for about two years and I've taken Inderal, Zonegran, Neurobiotoxin, Sinemet, Trazodone, Clonazepam, and then my current physician at the PADRECC ordered a DaTSCAN.

On March, 27, 2013, after eight years of trying to figure out what exactly was going on, she called me with the most exciting news, "Your DaTSCAN is consistent with Parkinson's disease." I was joking with her on the phone, "At least I can stop groping around in the night to find an answer!"

I have been blessed every step of the way and I can't count the hours I've spent sending out prayer requests for every doctor who has taken on my medical history. This includes psychologists, neuropsychologists, audiologists, psychiatrists, pharmacologists, internal medicine doctors, urologists, nuclear medicine doctors, etc., etc. We're in the works for DBS now!

2 Comments

Hi,
Did you retire from the Army? I am just curious how you received VA benefits. I was in the army and was recently diagnosed. I was exposed to DU, toxic areas, however really didn't think about it until I was diagnosed.

Thanks for your insight.

Eddie, Sep 25, 2013

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I am 42 and a Army retiree and was diagnosed with PD June of 2014. The VA in my state has been a great asset for therapy and treatment.

Sean, Aug 11, 2014

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