Thursday, March 27, 2008

Martin's Story - An Uneasy Truce

I will always equate the peak of my career in banking, as the day I was made a corporate officer, with the title of Assistant Vice-President. I knew I had gotten a position through perseverance, struggle and my sense of independence.

Of these three qualities, the one that is most damaged by my life with amyotrophic lateral sclerosis, is independence.

It was somewhere in the middle of 2006, that I was shopping with my wife at a local grocery store. She commented on the fact that I must be tired, as I was dragging around the store. Since I had had vascular problems with my left leg for some time, I mentioned that my foot seemed to be dragging. But she was right in that I was feeling fatigued.

Looking back on it now, I clearly see that particular event was the herald of ALS! Each time I discovered my left foot dragging and felt fatigued over small things, I shrugged it off.

It was the beginning of 2007 when I realized that I seemed to be losing power in my right hand. Naturally, I didn't associate the dragging left foot and a weaker right hand. I bought an exercise training ball and worked my weakening hand with it.

Little by little weakness became more apparent. At about the same time, my cardiologist was concerned over the fact I couldn't do the treadmill during a stress test. Combining that with the weakness in my hand, he referred me to a rheumatologist. That doctor ran a couple of tests, but said she couldn't help me any further. She referred me to a neurologist. Of course all of these referrals took time, and the months were going by.

When I finally got to see a neurologist, he ran numerous tests... carotid doppler, EMG, EEG, blood work, etc. Finally, he told me that in his opinion, I had ALS. When he briefly explained to me what that was, it was as if the floor had fallen out of his office. My wife gasped and I just sat there feeling very cold.

I went home and immediately got on the Internet, finding out all I could. I registered, online, with ALSA and MDA. I ordered all kinds of literature on it. I called my local ALS clinic and scheduled an appointment. I was lucky, in so far as I live only 20 minutes away from New York State's University Hospital were the clinic is held.

Of course, I was now totally positive that the neurologist had made a big mistake. Once I had gone to the clinic, they would set the record straight. But that was not to happen... the diagnosis was confirmed.

I won't go into all the nitty-gritty, as we all know what it is. Suffice it to say, that at this point in my life, my right hand is almost useless and my right arm is atrophied. My left hand is still viable, but weakening and that arm is quickly becoming useless. My left leg, the culprit that was the first to go, now frequently feels like so much dead meat, while my right leg is weakened.

The three qualities that made my career and in which I placed so much trust, have all come to play a part in this unique disease. Struggle is the most obvious and I am finding the simplest things in life, now require a struggle. I cannot get to my feet from a chair without often breaking a sweat. Reaching for my drink at dinnertime requires Herculean abilities. And so each day, becomes a struggle.

I know I must strive for perseverance, for, while the end result is always the same, the knowledge that you are persevering can give one the direction and focus to carry on, which is of the utmost importance.

But above and beyond all, is independence! I have fought, kicking and screaming, against losing my independence. My caregiver-my wife-would ask me, "Can you do this?" to which I would reply, smiling, "Marty can do anything!"

As time goes on, however, and my wife is helping me to walk, to brush my teeth, to comb my hair and to dress, the phrase changed into "Marty can do almost anything!"

I cannot let anything steal my independence, but ALS seems to always have the last word. With that in mind, ALS and I have called an uneasy truce. I am learning how to live with ALS and maintain an "independent dependence".

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