ALS and Wellness Blog: My ALS prognosis affects how I wrestle with making decisions

Decisions, decisions. When did making health decisions become so challenging for me? Well, it began after I was diagnosed with ALS. Scheduling annual health screens and medical treatments became complex decisions. Even purchasing a new pair of sneakers came with specific considerations.

ALS has created a whole new timeline for my life, plus health decisions with new rules.

A new ALS timeline

At one of the initial visits with my neurologist following my diagnosis, I asked my doctor if I should continue having an annual bone density screening. Her answer startled me. “Dagmar, we know that having ALS means that at some point in time, you’ll be using a wheelchair. And as a result of constantly being seated, your bones will naturally become soft and less dense. So, there’s no need to track your bone density levels anymore.”

Um, say whaat?

I then asked about annual dental exams and if the X-rays were bad for my ALS. She responded, “We know if you did absolutely nothing to take care of your teeth, it would take about 10 years for all of them to rot and fall out. Your teeth are certainly important, but Dagmar, your priorities have changed.

“For example, if you’re still here in 10 years and not totally relying on taking in nutrition through a tube in your stomach, we’ll gladly address whatever your needs are for teeth. Right now, we need to discuss what you should be doing within the next two months, what changes to expect in six months, and what to prepare for one year from now.”

Um, okaaay…

And that’s when she repeated the words “average life expectancy of two to five years,” and I left the doctor’s office with a whole new perspective on what I thought were simple health rules when making those decisions. I now needed to factor in my potential limited longevity.

Decision dilemma

Life expectancy and survival rates for ALS patients do vary depending on which symptoms first appear and how quickly the disease progresses.

For patients who experience a fast progression, their health decisions happen quickly and are focused solely on managing symptoms and slowing down the stages of ALS. Others like me, who are living beyond the five-year mark, have another perspective to weigh.

It was a learning curve for me. At first, I got caught up in trying to micromanage and consider my potential longevity in every decision.

For example, I had to replace my everyday sneakers, but I couldn’t decide between the higher-priced ones (which I really liked) and a cheaper pair. “I’ll never live long enough to wear out the expensive ones,” I told myself, visualizing my doctor’s prediction of my needing a wheelchair.

I spent days and days thinking about this decision, waffling and trying to justify one over the other. Finally, I picked the pricier ones and told myself they’d motivate me to keep at my daily exercises and not need a wheelchair for as long as possible.

I’ve since learned to make quick decisions about the “small stuff,” saving my energy for the more significant problems, like dental work.

Turns out I have lived beyond the 10 years that my doctor mentioned in our early visits. I have all my teeth, can eat normal food, and I’ve been visiting my dentist whenever needed. About five years ago, I had to have a crown put on a tooth, and wrote about my positive experience. At the time, I knew it was a good investment, figuring I’d be around for five more years.

Last year, that crown came loose, and as I sat in the dentist’s chair contemplating another investment in my teeth, I had to chuckle. I was proud of reaching this milestone and of my commitment to taking care of myself while doing the things that supported my health. I learned to accept, adapt, and live well with ALS.

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