Living in the Slow Lane of ALS

There’s no doubt about it — living with ALS has sure slowed me down! And if you have ALS, you probably feel your life slowing down as well.

It’s good to know that you’re not alone. Moving, eating, and talking more slowly, and feeling fatigued are common symptoms for people living with ALS.

During my first year of living with ALS, I tried to match the productivity levels of my previous zippy self. I’d throw myself into the day, expecting to accomplish many things, but I always ended up utterly exhausted by early afternoon. My feet felt like cement blocks, and my brain was burned out.

What I believe helped me tremendously throughout the past 11 years is rather than fight the new normal of living in the ALS slow lane, I embraced it.

Early on, I created and began following a set routine of daily habits that could accommodate my body’s ebb and flow of energy. I can still accomplish my important goals, but don’t feel guilty if I have to move some of the less essential tasks to another day.

Here are a few of my tips:

Firm up your daily health habits

Make sure you eat nutritious food, stay well-hydrated, and get enough sleep. Follow a daily routine, waking up, going to bed, and eating meals at the same time each day.

Around 3 p.m. each day, I take a break from the computer to drink a small fruit smoothie. This gives my brain and eyes a rest, plus it boosts my energy for the remainder of the day.

Adjust your day to match your body’s bio-rhythm

I’m slower in the morning, and I don’t like feeling rushed, so I try to schedule all medical appointments and meetings for the early afternoon. This is also appreciated by my caregiver-husband.

Use assistive devices to conserve your energy

Why waste the strength in your hands and feet doing tasks that could be accomplished with an assistive device? Adopting and using assistive devices is not a failure or giving up, but a sign of wanting to stay engaged in life.

For example, Boogie Boards and personal microphones help to conserve my voice in noisy environments. I use an electric toothbrush to conserve the energy in my hands so that I can use them for getting dressed or gripping my walker. My walker-with-wheels helps take the stress off my feet and body. My mobility scooter is great for covering longer distances like parking lots and big-box stores.

 

Plan as much as possible

Make a list of your goals and break them down into smaller, more manageable tasks. Plan ahead for each day for clothes, medications, and meals (more dining tips here). Let others know how they can be of help.

I keep a wish list of low-energy projects that I can choose from on my low days so that I can end the day knowing I’ve done something worthwhile.       

Simplify and eliminate decision fatigue

Your clothing should be easy to choose from, so eliminate what you don’t wear anymore and keep everything within easy reach.

I stopped wearing earrings because my poor balance hindered me from standing at the dresser to select and put them on. I’ve since moved my earring holder to the area where I sit and get dressed. Now I can take my time and not feel stressed. I also eliminated shirts with buttons and pants with zippers. T-shirt tops and pants with elastic waists making getting dressed quicker and less taxing.

Exercise

Yes, it’s important to exercise to counteract hours of sitting, the tendency to slump with poor posture and to keep weakened muscles healthy.

I break up my exercise sessions into 10- and 20-minute sessions throughout the day. The routines vary from sitting, standing on the floor, and even lying in bed. I also do specific breathing exercises that help me maintain a high lung function score.

Finally, before going to sleep, remind yourself of all you’ve accomplished that day. Be grateful for the good things that happened and mentally thank those who were there to help you.

If ALS has you living in the slow lane, try my tips and your day just might go a little smoother.

As I always say, we can learn to live well while living with ALS.

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For more inspiration and motivation on how to embrace living slow, I recommend this quick read: Unrushed: How to Feel More Spaciousness in Your Day, Instead of Time Scarcity

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A version of this post first appeared as my column on the ALS News Today website.

Photo by Morgane Le Breton on Unsplash

Dagmar Munn
ALS and Wellness Blogger

 “Simplicity boils down to two steps: Identify the essential. Eliminate the rest.”

Leo Babauta