It’s hard for me to believe that it is nearly 16 years since my MS diagnosis. I had seen a neurologist and had an MRI. The neurologist referred me to a neurosurgeon. I told each of them that I thought I had MS but I didn’t present with the usual sudden onset of symptoms typically seen in patients with relapsing remitting MS. The neurosurgeon had a better idea. He explained that my condition could be surgically treated. “I cannot make you better but I do think I can stop you from getting worse.” So I had surgery for a chiari malformation in July 2000. I was back to work in September feeling pretty good but still not right. Deep down inside I knew I was still in trouble by the end of the year.
2001 was a crazy year. I had become a vice president years before I could have dreamed. Problem is, it was anything but a dream. Frequent travel was expected and I was really struggling. I began falling more frequently. Worst fall? How about walking up the jet way, and getting off the plane, lugging my briefcase full of stuff including a laptop computer in front of a long line of people! Priceless. That was in the winter, early in the year. My wife, Becky, and I took what would be our last vacation without a wheelchair in the summer of 2001. It was a seven day cruise. Walking in the sand was no longer possible. The longer I walked, the worse my walking became. It just sucked!
Despite all of thI kept going. I wasn’t going to stop. I had been scooping fries in 1978 and now I was a corporate vice president. I had achieved my goal well before my plan. I wasn’t going to let any of these health problems get in the way. It would be mind over matter. I had worked too hard for too long for it to be spoiled. Traveling was getting so hard that I cut back wherever I could. It was hard for me to work in the back of the restaurants. I just couldn’t do much without sitting frequently. The corporate organization chart was shuffled again and I wound up with a different boss. I had a very strong relationship and years of service with my current boss. It wasn’t the same with the new one. I could see what was happening. My position was in jeopardy. The terror attack on 9-11-01 distracted the corporate world for a little while but I was eventually released on 12-10-01.
I started 2002 on a mission to get answers about my physical struggles. I went back to the neurosurgeons and neurologists. More and more, it was looking like I was right all along. The lumbar puncture was the last step. The doctor told me it was more to rule out other diseases such as ALS. Great! I got a phone call less than a week later. Yes, Joe, you have multiple sclerosis. Surprisingly enough, I was more relieved than anything else because I finally knew what was wrong with me.
Several months later I had my first appointment with Dr. Barbara Green in September or October ‘02. She concluded, after a very long medical history discussion, that the numbness in my fingers 20 years or so ago and was probably the first symptoms of my disease. She confirmed my hypothesis and officially designated my MS as primary progressive. The original, diagnosing neurologist had gotten me started on Avonex. She told me, as I had read, that there were currently no treatments for this form of MS. She told me that I had a rare form of MS and that there wasn’t a lot of work being done to find answers because the drug companies want to find drugs that work for a lot of people not just for a few that have the more rare form of the disease. She said that she would help treat my symptoms in the meantime.
For me, the writing was on the wall. There is no cure and there is a very good probability that my disease will continue to progress and make me more disabled as time passes. What was I going to do? I wondered how I would find another job in my current condition and then how would I hold it. Thank god Becky still had her job and it was a very good one but we couldn’t survive on that alone. I applied for SSDI on my own with no help from advisers or attorneys. I simply followed the directions and answered the questions. My application was quickly approved. Not only were they going to give me my retirement benefit, they would also fulfill the remainder of my child support obligation until my son turned 18. I also saw an attorney to discuss any opportunities I might have had with any discrimination lawsuits I might bring against the company. She did not advise a lawsuit but she did give me some tips that I was able to use to negotiate a higher severance package
It took some time for me to wrap my brain around all of this. It seemed like I was going downhill quickly. I started using a cane but that really wasn’t much help. I was getting frustrated because I couldn’t get out of the house. Finally, I gave myself permission to get an assistive device. I went shopping for a scooter but I came out with a wheelchair thanks to the advisor. For the long haul, I couldn’t have made a better decision. We had to buy a van so we could get the wheelchair out with me. We couldn’t afford one of those vans with a ramp built in so we bought a lift to get it in and out of the back of the van. At the time I was still able to drive and get the wheelchair in and out but that didn’t last long.
Mostly, I sat at home and did the best I could to make contributions around the house. I cleaned the house every week and did the grocery shopping for as long as I could. I could use the cart at the grocery store like a walker and that worked well for a while. Then one day the cart got away from me. I fell forward, flat on my face. It’s a good thing there was a good strong young man there to help me out. I think that was the last time I did the grocery shopping on my own. A while after that, I gave up driving. That was tough.
Yes, there is more. A lot more. More to come as soon as I can get it done.