How my special ‘partnerships’ help me as I’m living with ALS
It's a mental shift that helps me ride the ups and downs of ALS
Living with ALS presents many challenges. For me, navigating life with a rollator, thickened beverages, and daily medication often feels like an uphill battle. There are days I wish I could go back to a simpler time, before ALS moved into my life. But since turning back the clock isn’t an option, I’ve created a way to shift my perspective: I’ve started treating these essentials not as burdens, but as special “partnerships.” It’s a mental shift that helps me ride the ups and downs of living with ALS.
Because one of my symptoms is weak legs and feet, I rely on a rollator to support me when I walk and steady me when I’m standing still. It’s easy to take for granted how much it helps me.
When my feet shuffle or stumble, my immediate reaction is to blame the rollator, forgetting that we’re in this together. It’s a partnership, so while my rollator reliably does its part, I need to remember to uphold mine.
My role involves paying attention to my surroundings as I walk and maintaining good posture. I’m also responsible for doing daily mini-exercise routines that strengthen my hips, legs, and feet. I see this as a shared goal of maintaining my mobility and stability.
Powder partners
This same philosophy extends to my beverages. Dysphagia, or difficulty swallowing, means every liquid I consume — even my morning coffee — requires adding a thickening powder. (Yes, it’s a bit of a “yuk” moment.) But simply adding the powder doesn’t guarantee that I won’t accidentally choke.
My part of this partnership involves being mindful of my body and my surroundings. That means avoiding slumping or slouching and avoiding distractions while I drink. These may seem like small actions, but they are my contribution to getting the most benefit from the powder and ensuring that I always safely swallow.
Pill partners
Finally, there’s my medication, a daily commitment that I approach with the same partnership mindset. My medication is Rilutek (riluzole). I’ve heard some ALS patients express disappointment with it, giving up too soon and saying, “It didn’t do anything.” This makes me wonder if they expected the medication to work in isolation, without the support of good lifestyle practices. For me, the medication partnership extends beyond just taking a pill. It includes a commitment to nutritious, wholesome foods, to reducing mental stress, and most importantly, to getting a good night’s sleep.
My unique, new mindset is a positive solution that helps me stay healthy despite having ALS in my life. I invite you to try out all of my strategies. Together, we can 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.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.