I remember the day I was diagnosed with Parkinson's disease. My reaction was not one of resignation, nor did I come to the knowledge I had this incurable disease with fear or trepidation. The very first, initial reaction I had was relief. Yes, relief.
"That's it? That's all I have, Parkinson's disease?" I asked my family practice doctor, incredulously.
"What do you mean that's all?" Parkinson's is a pretty significant medical condition," he reminded me.
"Yeah, but not as significant as what I thought I had. I thought it was something really serious, you know scary and almost instantly debilitating and certainly a lot more fatal and a lot quicker to kill than Parkinson's. I thought I had Amytrophic Lateral Sclerosis, you know, Lou Gehrig's disease," I replied.
"Nope, you have the classic Parkinson's robot walk and all the symptoms you are exhibiting are classic Parkinson's, but it will take a consultation with a neurologist to make the diagnosis," the doctor answered.
It turns out, the benign essential tremors my Army neurologist diagnosed me with three years before were probably the precursor to Parkinson's. He told me that all of us will get these tremors as we get older.
"But I'm only 44 years old." I told the specialist.
"Some people get it younger than others," was his answer.
The medication he started me on worked at first. Then the symptoms slowly, insidiously and actually unnoticeably began to become more severe. The tremors got worse. My movements became more and more stilted.
Over the three years that preceded my Parkinson's diagnosis, I had been experiencing annoying symptoms that were slowly getting worse and limiting the physical movements and activities I performed to get through the day. It was impossible to rise from bed in one movement as I could in the past. My walking became more of a shuffle.
After three years, I finally realized it was not normal to need to grasp the top of my car door and pull myself out of the car. My peers and fellow workers didn't lose their balance and sometimes fall or seemingly trip over something that was not there. I noticed myself "freezing" as I hung up my coat in the closet or tried to step over the bathtub.
However, the fear that what I was experiencing was the fatal neuromuscular disease A.L.S., kept me from going to the doctor with the symptoms. When I finally did, I realized how foolish I had been. If it was the disease that killed Lou Gehrig, it was certainly terminal and debilitating, but it would have been terminal and debilitating no matter what I did. The Parkinson's could be controlled, it was incurable but treatable.
When I had my appointment with the neurologist a week after being tentatively diagnosed by my family practice physician, I was found to be in Stage II Parkinson's disease. I was started on a medication called Senemet, a combination of L-Dopa and Carbi-Dopa. My first tablet gave me what I can only describe as an incredible rush. Within 15 minutes, the chains that caused me immobility and robot-like movements, the freezing and stilted movements, even the tremors were instantly gone. I became younger again. Although I was warned that the drug would only last 10 to 15 years, I immersed myself in my new found freedom. I began bowling again. I ran and swam. I was like a kid again, for a couple of years.
The Parkinson's symptoms, which would sometimes return between doses of medication, now haunted me all the time. A simple medication adjustment and the addition of another drug, pramipexole, helped for a while. The pramipexole caused me to become a compulsive gambler and I lost my job, my wife, the respect and relationship I had from and with my children and family, my car and became a hopeless homeless derelict, but the tremors and Parkinson's symptoms were under control.
In 2001, a neuropsychiatrist at the VA Hospital in San Antonio warned me about pramipexole. He said there was a theory that it caused compulsive behavior and tried to wean me off of the drug. But by this point in my life, having lost everything that was important to me, when the weaning did not work, I told the doctor I preferred to be a nonshaking compulsive gambler than a homeless person with tremors. I stayed on the pramipexole.
By 2004, I was in Indiana and I began seeing another neurologist. He took me off of the pramipexole and put me on Amantidine. The new drug worked and I no longer felt the urge to gamble. I also must thank a 28-day residential compulsive gamblers program I participated in at the Brecksville, Ohio VA hospital just before getting off the pramipexole as well.
It is now three years later and sure enough, the Senemet is not working as well as it used to. In fact, it is quickly losing its potency and my symptoms are back pretty much the entire day. In the morning, I have a difficult time getting out of bed and getting dressed. I take my first dose of Parkinson's medication at about 3 AM and it doesn't start working until about three to four hours later. I have started losing my balance again and freezing. I have fallen a few times.
I have been forced to quit a job I dearly love. I am not the man my wife married a little over a year ago and I cannot provide her the intimate moments she would like. Making love is a chore for her and that hurts me deeply. I won't accept pity sex and she is 16 years younger than me and deserves more. I am not a happy camper and I don't want to live like this. The people I love do not deserve having a burden like me imposed on them. I don't know what I will do.
I am scheduled to return to the United States on May 31 after completing my last day in a job I had hoped I would die doing. I am totally miserable and feel like a failure. I am toying with the idea of getting off the airplane in Detroit on June 1 and not getting on the final leg of my trip home to Indianapolis. I think that would be a better outcome than the misery I expect will occur should I continue to be part of my loved ones' lives.
I have three grown daughters who won't have anything to do with me. Perhaps the best thing I could do for my new family is disappear. I started this essay intending to create a positive picture of how to cope with Parkinson's disease. I am afraid I have failed.