The tips and strategies that help me participate in life

Living with ALS for the past 14 years has taught me an important lesson on adapting to a new way of life. Before ALS, my life was filled with carefree movement. I spoke with ease and enjoyed endless physical energy. Now, even though my ALS symptoms include weak legs and feet, plus speaking and swallowing difficulties, I still haven’t given up on participating in life. So I depend on the strategies and tips I’ve picked up along the way.

I’m happy to share a few of those with you. Before I do, because ALS affects patients in different ways, there’s no one-size-fits-all process to living with the condition. I wish there were. We all do. I suggest you read through my various examples and think about how you can adapt them to your situation.

Predictable days

I’m a believer in having a daily routine. Knowing what lies ahead helps me feel relaxed and enjoy whatever activity I do. However, if my calendar has an out-of-ordinary day scheduled, then I set about preparing and planning as if it’s a trek up Mount Everest.

But ALS can be unpredictable. To help me answer the question, “What if?” As in, “What if my symptoms get worse?” I made a list of questions and possible solutions. Having the list at the ready has been an emotional relief.

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Banking my energy

Most ALS patients are told to conserve their energy. When I heard this advice, I felt I was being told to sit and do nothing. I decided to change the phrase to don’t waste your energy, because I knew I needed to use it somewhere else.

For example, we remodeled the shower area in the bathroom to accommodate a roll-in chair. That way I don’t have to waste energy standing with a death grip on the grab bar and wash my hair with the other hand.

Next, I added a chair to the area where I dress and moved all the clothing I wear most often to within easy reach. I now choose clothes for their comfort and the ease of getting myself dressed over struggling with zippers and fiddly buttons.

What do I do with my so-called extra energy? I use it for my favorite activities such as adding in exercise movements throughout my day, knitting scarves, and typing on my computer.

Rolling with ALS

Not wasting my physical energy also involves intentional trade-offs. I used to feel embarrassed at having to use a rollator to help me walk. But it’s a safe and energy-saving alternative compared to lurching through the house grabbing onto furniture. When I’m out and about, I’ve learned that pushing a rollator across parking lots or through the grocery store leaves me whooped. But riding a mobility scooter gets me where I need to go and saves my leg strength. These helpful adaptive devices don’t label me as “old” or “less than.” They keep me participating in life.

I hope my tips and strategies spark ideas for your creative solutions. I’d love to know what you do. Please share yours in the comments below. Together we can help each other learn 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, and are intended to spark discussion about issues pertaining to ALS.