My journey began sometime between 2003 and 2006. In the beginning, the symptoms were subtle and sporadic. When you are in otherwise fairly good health, it’s easy to dismiss or overlook the changes in your body. First, it started with severe muscle cramps in my legs. I was somewhat immobile due to recent surgery, so I just attributed the cramping to that. After about a month, it was gone. Then I started to notice weakness in my thighs. I complained to my doctor about it and he thought that it was due to a medication I was on. After switching my meds, still no improvement. I just thought I’m getting older (at this point I’m in my mid 40’s).
I was always a big walker. My dog would not allow a day to go by without us going on a long walk. The first time I tripped and fell, I didn’t think anything of it. There was a slight rise in the sidewalk. Anyone would have tripped on it, right? But then a few weeks later, I tripped on it again. I thought I’m getting clumsy or lazy, but I still didn’t think much of it. Much to my dog’s dismay, our walks became shorter and shorter. My legs were tired and I was exhausted.
The tripping and falling became more frequent. On walks, at home, in stores, at the mall, etc. Then I tripped and fell at work, and I realized how it happened. When you walk, your foot goes from heel to toe. My legs were becoming so weak that I wasn’t picking up my feet and my toes would catch and I would fall forward. After telling my doctor about this episode, he felt it was time for me to see a neurologist. Thus began my endless doctors’ appointments.
Over the course of two years, I went through four different neurologists. I went through multiple exams, MRIs, CT scans, EMGs, etc. All agreed that there was a problem, but no one could make a diagnosis. All they could do was rule out what it wasn’t – MS, Parkinsons, and some lesser known diseases.
Finally, during my third EMG (what I call the pins and needles test), the doctor who was conducting the test started talking about ALS. When I was officially diagnosed, I was only 50 years old. I still had things on my bucket list. I was still working. We had a sailboat, that I loved. I wanted to travel. I had things to do. You find yourself going from planning your next vacation to planning your funeral. Suddenly all of your dreams go right out the window.
There is the emotional and mental toll it takes on you (and your family) in addition to the physical toll. During the first year, my husband and I didn’t tell anyone of my diagnosis. We were trying to come to terms with it ourselves. Sharing this information with family and friends would only lead to questions for which we didn’t have the answers to. I found myself in a serious funk, where it was difficult to find pleasure in anything. I was so miserable I couldn’t stand being in my own company, so I can only imagine that others didn’t enjoy being in my company either.
Then there is also the financial aspect. It is a very expensive disease that have left many families in financial ruin. Consider modifying your bathrooms so it is accessible for a wheelchair, ramps, stairlift, grab bars, a lift van, hoyer lift, etc. Some things are covered by insurance, but some are not.
Now, don’t cry for me. All things considered, I am doing very well compared to most. I was diagnosed in October 2010 and I’m still here. While I am in a motorized wheelchair and scooter, and our house has been modified to fit my needs, I do live a semi-normal life. Although I am no longer working, I was able to work for 6 and a half years after my diagnosis as a tax accountant, before I had to give it up. We no longer have our sailboat, because it became too dangerous for me. I am resolved to the fact that I will not be able to travel to many countries, because they cannot accommodate my needs. But then I look at those in our support group. Those who joined after me…watching them deteriorate….who are now gone. So you see, I am one of the “lucky” ones, since I am progressing at a very slow rate and I am still able to talk about it. Most are not as fortunate.
Editor’s note: Allison and her husband Kevin serve on the board of ALS of Michigan.