Prepare and Prevent: My Strategy for Living With ALS

During my first year living with ALS, I spent a lot of time researching and learning whatever I could about the disease. I came across long lists of medical equipment that patients like me could expect to use when ALS symptoms progressed. Books written by medical experts with in-depth explanations of the effects symptoms had on the body. And patient blogs sadly chronicling the progression of their own ALS symptoms. At the time, nothing addressed my burning question: “What can I do right now?”

Through trial and error, plus connecting with like-minded ALS patients around the world, I developed a personal plan that worked for me. It’s one that I believe can be of help to you, too, no matter if you are newly diagnosed or have had ALS for the past few years.

My plan follows the thought process of what goes into preparing for a natural disaster. We hope they don’t happen, but if a hurricane, flood, fire, and yes, even ALS symptoms are on the way, advance preparations are advisable. Preparation is important, but so is holding on to the mindset of prevention.

ALS symptoms progress differently for each person, and we may not be able to prevent the inevitable, but there’s a lot of research pointing to ways to slow down symptom progression. So I include these in my plan as well.

Recommended Reading

December 14, 2022 News by Margarida Maia, PhD

NP001 May Slow ALS Progression by Limiting ‘Leaks’ of Gut Bacteria

The 1st step: Prepare

I began by drawing a line down the middle of a sheet of paper, and on the left I listed all the areas of my home that I used. My list included the bathroom, bedroom, dressing area, kitchen, entry doors, and even transportation.

Then, for each area, I asked the question, “What if?” As in, “What if I had trouble walking, balancing, or standing? What if I had to use a walker or a power chair, or relied 100% on a caregiver in order to use this space?”

As I thought of possible answers or solutions, I jotted them down on the right, next to the area in question. These were the modifications or changes in that area that needed to be made (short-term and long-term) to prepare for the eventuality of my ALS symptoms progressing.

For example, my husband and I decided to install grab bars in the bathroom. We also added an ADA-height bidet toilet and remodeled the shower area to accommodate a roll-in shower chair. Next, I added a chair to the area where I dressed, and I moved all the clothing I wore most often to be within easy reach.

In the living room, side tables and chairs were spaced to allow easier access for a rollator to move through. Then, I moved my laptop computer from a small space in our office area to the dining room table. This gave me more space to have a rollator nearby, plus, I could sit on a sturdier chair. And so on. We continued making small changes throughout our entire house.

Over time, I’ve really appreciated the various modifications we had made early on. They helped ease my anxiety as my symptoms progressed and made the transition to using a rollator much easier.

The 2nd step: Prevent

As I mentioned earlier, research exists on ways to slow down ALS symptoms. These are so simple many patients overlook them entirely, but I encourage you to include them in your daily routine. I follow four strategies and wrote about them in more detail in a previous column.

• Medication: Follow your doctor’s advice and take all prescribed medications.
• Mindfulness: Practicing mindfulness has helped me feel that I am in control, have more awareness, and am moving safely.
• Motion: Moderate exercise can improve life span and ease ALS symptoms.
• Mood: When I notice that I’m having trouble coping with change, I ask myself what has changed, what I need to do, or who can help me.

Now, 12 years later, I’m still researching the latest information on ALS, but I’m doing it with the knowledge and confidence that I’m prepared for future changes — and doing what I can to slow down those changes. Take a test run with my plan, it just might be a perfect project for you going into 2023.

My New Year’s wish for all my readers is: Let’s keep learning 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.