She said 'Parkinson's.'

About 2 years ago, something happened. I don't know exactly what it was, but it seemed to have coincided with that heinous heat wave, with temperatures over 100 for what seemed like an eternity. I was working in an air conditioned office that wasn't as cool as it sounds. The a/c doesn't work where I live, the landlord knew it and told me, but at $1100 per month, a steal in this area, I wasn't going to argue.

Strange sensations and uncontrollable leg shaking became a nightly experience. I couldn't tell you if my right leg shook for 30 seconds or 5 minutes, but I sure could tell it was on it's way. It would eventually pass, but at work the next day, I would find my left leg shaking almost all day long when sitting at my desk. After about a month of nightly leg shaking, about 3 months after I first noticed it, I finally went to see my physician. The medication he gave me stopped the nighttime shaking the first night, but the daytime shaking continued. Always one to walk up 1 or 2 flights of stairs before taking the elevator, I found climbing those 2 flights of stairs to the office becoming more difficult. If I neglected to take the medication, I would know it. I found myself needing to take it earlier and earlier. The dosage went up. A referral to a neurologist was next, followed by MRI's, blood tests, cognition tests, sleep tests.....

I had already been thinking about an extended leave of absence in 2006 before all this started. I was tired every day. I would be lucky just to be in bed for 7 hours a night. Eight hours of sleep a night? What a joke! Slowly, the number of hours I slept on Friday and Saturday nights crept higher and higher in order to make up for the deficiencies accumulated during the week. Chronic and constant aches, pains, and fatigue were the norm. The pains were sharp, deep, and usually in the same dozen or so locations. The aches were all over. The fatigue made me want to crawl back into bed. It is like having a nasty flu, every day, but with a hangover. Medical appointments and many sick days became routine in 2007, so much that I had used up almost all my sick time. Finally, I convinced my neurologist that all I needed was about 8 weeks of rest, with no major plans, no agenda, no new projects, and no missions to finish old projects. All that, and a disability checque, I figured, and I should be as good as new. I started the leave in mid-November of 2007 and 6 weeks into it, I was still feeling like shit. "This is not good", I thought. Even though the MRI showed a small handful of small grey spots, my neurologist would not say if, or that I 'had' anything. I'm sitting in her office looking at all the neurology posters on the walls reading the symptoms of MS, Parkinson's, Alzheimer's, Muscular Dystrophy, among others, saying to myself, "check, check, check..." as I went down the various lists, noting that many of these afflictions share several symptoms. I remember the despair I was feeling when I pointed to one of the posters, and stuttered, "B-b-u-t what about all these symptoms I'm experiencing??"

At the UCSF MS Center in San Francisco, I received a 2nd opinion. This doctor said she didn't think it was MS, and that these symptoms were more 'Parkinsonian.' A sleep test revealed I had been suffering from sleep apnea and hypopnea (not to be confused with hip-hop-nea.) A 2nd MRI about 6 months after the first one showed no furthur advancement of the grey areas. Yet the symptoms persisted, and worsened.

I went back to work in January of this year when I said I would, still feeling like shit just about every day. One more trip to the neuro's office and it was decided that I would be going on disability, permanent this time, for Parkinson's, and not Fibromyalgia, as I had been thinking during my time off.

I can't say that the heat wave of 2006 was the culprit, only that it was a significant event just before all this worsened. There had been sports injuries, substance abuse, and psychological trauma that may have contributed to this. There was the tingling in my left hand that was noticeable only in the colder winter months that started about the time I started my first sit-down, 8-hour-a-day, computer job. Carpal Tunnel Syndrome had been ruled out. That tingling has now spread to the whole left side of my body. The twitching has become much more noticeable, especially when I lay still.

April 2nd was my last day at work. I had been there for 5 years and 1 month. The longest I had spent at any previous job was 5 years and 3 months and so wanted this one to last longer. I'm not sure how much longer I will be able to play drums in the band, but I'm hoping that I won't have to give that up, too. Sold the mountain bike, the skis are going next. Needing a creative outlet, I started writing. I had been writing in an on-line baseball discussion group, when Matt O'Donnell read my posts and invited me to be a contributor to his Red Sox blog, "Fenway West." Perfect timing.

I spend most of my days at home now, never knowing how I will be feeling from one day to the next. It's next to impossible to make any plans. So I stay home and write.