Why I’m Cautiously Optimistic About My ALS Future

If a year ago you would have told me that going without a face mask would be an emotionally challenging thing to do, I would’ve had a good chuckle. But last week, as a fully vaccinated person, I did it, and several times to boot.

Although I felt confident being mask-free, waves of guarded wariness still swept through me. Those feelings of cautious optimism we all learned to adopt during a year of pandemic restrictions were the same that help me live with my ALS.

As the pandemic increased around the world, I noticed many parallels between the life lessons taught by living with ALS, and what my friends and family were experiencing.

Both events involve intense change, loss of unrestricted endeavors, and feelings of isolation. Both require us to slow down and redirect our focus from an uncertain future to noticing the present moment. Goals are reexamined, and we have to adopt new ways to stay connected with friends and family.

What worked for me

My strategy for coping with change was to adapt, learn, and survive. It served me well through 11 years of ALS, and continues to help me face the changes brought on by this global health crisis.

One challenge we all shared during isolation was how to spend our newfound time. Some learned to bake bread, while others tried gardening. I decided to double down on my personal commitment to practice mindfulness and follow a consistent program of daily exercise.

Following months of podcasts, YouTube videos on meditation, and practicing the techniques, I feel more relaxed and in control of my thoughts and emotions. A happy side benefit is that my sleep has improved as well.

During the pandemic, many ALS clinics like mine were forced to suspend in-patient visits. I had several positive virtual visits with my neurologist, but I think most ALS patients will agree with me that virtual just isn’t the same.

I’m looking forward to my first in-person, full ALS clinic visit, scheduled for August. To bolster my motivation for daily exercise, I’ve set the upcoming clinic appointment as a goal point. I call it my mini-Olympics day, because I’m asked to walk the hallway, push, pull, breathe in, and exhale hard. All while chatting with the clinic staff and maintaining energy throughout the three-hour visit.

I’m a realist and don’t expect to win any gold medals, and I know my ALS has progressed a little. But I can count on feeling cautiously optimistic about my doctor’s final evaluation of my performance that day.

A goal for ALS

It’s important to have goals, no matter the situation we find ourselves in. Recently, the ALS Association announced its goal of making ALS a livable disease by 2030.

Some in the ALS community were quick to scoff at the bold proclamation, complaining that a cure should have surely happened by now. But I believe a cure will be discovered only when advancements in technology allow ALS researchers to fully understand and “see” the disease source.

Will they reach their goal? I’m cautiously optimistic. Will I be alive in nine years to see it happen? I’m optimistic that I’ll be here, and it’s a goal we all should share. In the meantime, let’s aim to live well while living with ALS.

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