Don’t Let ALS Define Who You Are

Dagmar Munn avatar

by Dagmar Munn |

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Once in a while, a newly diagnosed ALS patient will reach out to me and ask for help in their adjustment to life with ALS. I’m always happy to share resources, motivation, and tips, and usually, I begin our online friendship with the question, “Tell me a little about yourself?”

Soon, I’ll receive their reply, which goes something like this: “Hi, I have sporadic ALS with lower limb onset, although I think it’s becoming bulbar. I have to sleep with a BiPAP machine because I have trouble breathing, and I’ve just started taking …”

As I’m reading and wading through the technical ALS jargon, I’m thinking, “Gee, I was expecting answers more along the lines of where this person lives, or about their interests and hobbies.”

Sometimes newly diagnosed ALS patients are bombarded with so many statistics and labels, and so much disease information that it overtakes how they describe themselves. Their focus is on the numbers, and that, in turn, dictates the course of their life.

I believe it’s important to know the difference between relying on numbers and when to trust yourself.

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Defining the day

For example, a while back, my husband bought a new digital clock for our bedroom. But beyond displaying the time, it gives us the indoor and outdoor temperatures, humidity, barometric pressure, plus a graphic image of what the sky looks like outside.

We know that all of those digital weather readouts won’t define our day or how it will unfold. Besides, we can just look out the window and get the same idea of what the weather is. Yup, it looks warm and sunny out there.

My point here is that the numbers don’t dictate our day. Rather, each day is defined by how we react to the events that happen around us.

It’s the same with my ALS — it doesn’t define me.

Adjust, adapt, and live

When I wake up in the morning, my first thoughts aren’t, “Oh, I have ALS, and here are all the ways it will restrict what I can do today.” Instead, I check in on how my body feels, I think about what’s ahead on my schedule, and then I get on with it. Sure, I move and talk more slowly than others around me, but I’m still me.

And throughout the day I make adjustments, to the events and to my ALS.

I know that whenever I pass by the refrigerated dairy case in the grocery store or sit under the cold air vent in a restaurant, I get a sudden case of top-to-toe shivers. That’s because ALS causes my body to be sensitive to sudden temperature changes. Rather than suffer in anger or avoid these situations altogether, I tuck a small hand-knitted scarf in my purse. At the first sign of a sudden cool draft, it’s quickly wrapped around my neck. It’s an easy fix, but it’s also the result of not letting ALS define me.

My goal, and what I tell my online ALS friends, is to focus on maintaining the quality of your life. Live with purpose, meaning, and joy.

Life can be challenging enough with its daily surprises. It’s even more challenging when we’re living with ALS. How do you define yourself? By labels, numbers, and the adaptive devices you use? Or by who you are?

Let’s reach out and help one another. Let’s 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.

Comments

Alejandra avatar

Alejandra

Thank you so much for your article. I live in Montevideo, Uruguay. I have been diagnosed ALS in february. I am trying to deal with the idea of ALS, but in a way that it doesn't hide the rest of my life. I found that the title of your article is what I need to focus on. A big hugh from the south. Alejandra

Reply
Dagmar Munn avatar

Dagmar Munn

Thank you for your kind words, Alejandra. I applaud you for wanting to not let having ALS take over who "you" are. If you need more inspiration I suggest you look over some of the posts I have on my ALS and Wellness Blog: https://alsandwellness.blogspot.com/2017/09/als-and-wellness-blog-archives.html

Shantanu chattaraj avatar

Shantanu chattaraj

I am suffering from ALS from 17monthS

Reply
Dagmar Munn avatar

Dagmar Munn

Best wishes to you Shantanu for finding your own way to live well while living with ALS. May I suggest some of my blog posts to give you strength and motivation: https://alsandwellness.blogspot.com/2017/09/als-and-wellness-blog-archives.html

Veronika Wuyts avatar

Veronika Wuyts

Hello Dagmar, again a stellar article. When we co ta yes you in tbe very beginning you already helped us at looking how to live well and this is now really our motto every day, consistently since 6 months. Yes the beginning was a bumpy ride but now we are doing well. The morale is good even when the disease takes its course …live well, here and now. Thank you, keep well youraelf

Reply
Mark Reavis avatar

Mark Reavis

I go thru the News Today post and look for your name. Yours are the only ones I read, every day. I read others sometimes, but always yours. In another life I think we would be great friends. Thanks!

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Kelly avatar

Kelly

Wow , you nailed it! The last 3 months after beginning a trial. I wake up and instead focusing on the day . It was , I feel bad, I have to take this medicine , and this medicine a hour later . I look in the mirror and find everything the disease is slowly taken away, which brings on the tears …
I have forgotten what it like to smile and although I am surrounded by the most amazing family and friends, I find myself withdrawing from all the activities I once’s enjoyed as I worry what I can’t do instead enjoying it , even if it’s in a different way. Today I dropped out of the trial, as my body just was not accepting it. Once again I felt like I was letting my clinic down and what would they think. But I also realized I need to get back to living, not just for me but my family! Your mindset plays a huge part in any situation. So when I read this I realized that Tomorrow is another day and we can make it great .

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Pauline Kaza avatar

Pauline Kaza

I live in assisted Living and trying to find my purpose in life and also trying to figure out a life style..

Reply
Dagmar Munn avatar

Dagmar Munn

Pauline, just knowing you are open to finding purpose will bring opportunities to you. You are in my thoughts :-) Dagmar

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