Planning and Preparing Help Me Live With ALS

Even though I believe I’m a pretty good planner and can strategize with the best of ‘em, last week threw me into a planning frenzy. I was anticipating my first in-person ALS clinic visit after nearly a year of online appointments with my neurologist.

Pre-pandemic, I had many in-person visits under my belt. But now, I was out of practice in preparing for the three-hour visit. Would I forget to bring something important? What would be different this time? Would the clinic team include the same people as before? And what if they told me my ALS symptoms had progressed?

After taking a few deep breaths and making a list, then breaking everything down into smaller tasks, I felt back in control.

Living with ALS certainly forces us to develop our planning skills. Patients and caregivers alike gain the expertise of choreographing a marching band with the observation of an air traffic controller.

Of course, my planning involves only me — I’m a party of one. Whereas fellow ALS News Today columnist Kristen Neva, one of my ALS heroes, is a caregiver for her husband, who has ALS, plus Mom to their young children. She experiences planning challenges day in and day out.

For me, planning and preparation are essential for not only major activities in my life, but the daily, mundane things as well. For example, due to my ALS symptoms, certain expressions have dropped completely out of my vocabulary — phrases like “jump out of bed” or “throw my clothes on” or “dash out the door.” Even “oops, I need to go back, I forgot something.”

Nope, everything needs to be planned out, laid out, or at the ready.

How did the ALS clinic visit go?
It actually went very well. I knew it would be a three-hour visit, so I brought a drink in a travel mug, dressed for comfort, and anticipated sitting in hospital-grade air conditioning. I always bring a scarf!

Once there, after navigating the new COVID-19 rules at the check-in station, I felt relief seeing the familiar faces of the clinic team. They were their same friendly, helpful selves.

Then, we began the testing: the push, pull, deep breathing, and demonstrating how I could walk the entire length of the hospital lobby with a rollator and wearing my AFOs.

Throughout it all, I realized another phase of my planning was paying off. By spending all those months at home following my various exercise routines and treating my ALS clinic visit like an Olympic challenge, the team agreed that my symptoms hadn’t progressed since the previous year. I was maintaining!

What if …?
Is there room for spontaneous moments with ALS? Yes, but I still have to somewhat plan ahead. My mobility scooter is always charged. I dress in clothes ready for a day at home or a ride out and about.

What if things go wrong? When life throws a curveball, I rely on my mental games. I imagine I’m in a driver’s ed training film, or I’m the action-hero having to face challenges coming at me from the left, right, and center.

Try it yourself
Rather than viewing the planning of every detail as a hassle, try embracing the task. You’ll be doing a favor for your future self, reducing potential stress, and will be less of an emotional burden for those who love and care for you.

You will be expanding your positive living skills and learning how to live well while living with ALS.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.