MS -- My Story

When people hear the words multiple sclerosis, many think wheelchair. While this is ultimately true for some afflicted with this disease -- a good many will not have this experience. Take me for example. If you met me knowing I have MS you would say to yourself he looks fine.

My first experience with MS that I was aware of happened on a very bright sunny day on the golf course. I noticed that something was strange with the way I was seeing the ball in flight. It was difficult to follow and I was a little dizzy. A few days later I was making a presentation to the Board of Directors at my bank -- something I often did. In response to a question from a board member, I looked up from my papers and the whole room split apart and I felt very dizzy and nauseous.

I learned later that I had a nystagmus of my left eye which had the effect of locking that eye in place only allowing it to slightly oscillate. An MRI (of my brain) disclosed lesions and plaque formations that three neurologists diagnosed as possible MS which is usually how the early diagnosis is made. After eight weeks or so the symptoms almost cleared up and I was back to driving a car. I only missed one or two days of work. This was in 1989.

Naturally, I thought the doctors were mistaken and that I didn't have MS. After all, I was fine, wasn't I? When I was tired I simply said "everyone's tired"; when I felt a little uneasy gazing to my right I ignored it blaming it on eyestrain; when I had sudden equilibrium problems and bumped into walls or doorways I dismissed it as being distracted; I rationalized everything because after all, I didn't have MS.

In 1992 things became progressively worse. I was often very tired -- in fact I was sometimes so tired that I took vacation days, personal days, or sick days to rest. I didn't tell anyone at the office. By the time August came around I had taken 18 sick days, all four weeks of my vacation and all of my personal days. Many other days I didn't go all the way (25 miles) to the office but would go to a near by branch and do my work by phone or fax. My denial was powerful. My fatigue, I said, was a result of stress even though very often I couldn't stand for more than a minute or two. And my driving! I was driving over curbs or onto shoulders because I wasn't concentrating: I was distracted by work. The double vision I was routinely experiencing was a result of eye strain. And the equilibrium problems -- well, you know...I had an excuse for everything.

Then one day I was driving home and got about eight blocks from my house when I realized I didn't know how to get home. I was lost! For perhaps a minute, a very long minute, I sat there in my car frightened because I didn't know which direction to go. I eventually got home and I now believe that this temporary dementia was not a direct result of MS but a consequence of the stress caused by my denial.

A very cooperative Board of Directors, reassigned me to a position that had less pressure and stress. In effect, although I didn't realize it then, my career was finished, ultimately a difficult pill to swallow. I was no longer in the front lines managing a 150 million dollar department -- a person of modest influence who often worked 12 hour days. On September 15, 1992 I went on full disability -- what a bleak day. I just left the bank (snuck out might be a better description of how I left) not feeling too good about myself. That was the reality of acknowledging I had an incurable disease and an uncertain future.

Since that time I have been holding my own. On June 12th 1998 I went on a drug called Copaxone. It must be injected daily and, hopefully, will accomplish two main goals. First it is supposed to reduce the number of exacerbations and second it might stop people with relapsing/remitting MS from getting worse. The 'Jury' is out and my optimism is tempered by the mixed results I've heard from others who are on this medication.

I keep on a fairly strict diet, maintain a modest physical therapy regimen and, to battle the ever lurking possibility of depression, have taken up the challenge of learning to play the (French) Horn. I still need a lot of rest. It takes me a longtime to read a book that a few years ago would have taken one night. I still have modest right gaze problems and my eyes play tricks on me when I read music so I often see the wrong note! The message from one eye takes a little longer to get to my brain says the neurologist. But I have a very supportive, non-patronizing wife, two wonderful children and good friends. What more could I ask for? Oh, and yes, I look fine!