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.
Rather than fight my new normal of living in the ALS slow lane, I decided to embrace it. I now follow a set routine of daily habits that can accommodate my body’s ebb and flow of energy. I can accomplish my important goals, and I don’t feel guilty if I have to move my 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 medical appointments and meetings for early afternoon.
- 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? Walkers and electric scooters are great for covering longer distances without taxing legs and feet. Boogie Boards help to conserve your voice in noisy environments.
I use an electric toothbrush to conserve the energy in my hands so that I can use them later in the evening for my favorite hobby, knitting.
- 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. 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 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.
- Exercise: Yes, it’s important to exercise to counteract sitting and 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 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.