How Pivoting My Perspective Helps Me Live With ALS

Dagmar Munn avatar

by Dagmar Munn |

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I spent most of my life following daily habits and routines that shaped my perspective about how life ought to be. When ALS appeared, it brought change and created imaginary roadblocks in my mind. I didn’t want things to change, to learn new habits, or to adapt to my new way of living.

I discovered that the only way to regain control was to change my perspective. How did I do that?

I redefined the rules

Those early morning lab appointments are something else! After diagnosis, gone were the days when I could just roll out of bed, throw on some clothes, and head out the door. ALS has thrown my life into slow motion. Not only does dressing take longer now, but I also have to strap on my ankle-foot orthoses (AFOs).

And for me, life doesn’t begin until I’ve had my morning cup of strong coffee. But my eureka moment really came when I realized that fasting ahead of lab appointments doesn’t always have to be at night — daytime fasts are OK, too.

Whenever I’m scheduled for a lab test, I get up early, leisurely drink my coffee, and have a bite to eat. Then, I fast for the rest of the day. By the time my late afternoon appointment rolls around, I can show up calm and stress-free.

We all have different health needs, so if you want to try this method, please check with your doctor first.

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I embraced a new perspective

Although my AFOs helped improve my ability to walk, I’ll admit that I hated the way they looked. When viewing myself in the mirror, all I saw were clunky, white polypropylene tubes encasing both lower legs.

My mind raced. What would people think? Would they stare? Would they cringe at the sight of me?

I decided to pivot my perspective of me. If people were going to stare, why not give them something fun to look at? So, I gathered up my courage, shortened a few of my favorite slacks, and began wearing bright, colorful, knee-high “happy socks” with my AFOs.

Rather than being an embarrassment, my AFOs and socks told the world, “I own this look!” When anyone caught sight of my colored socks, they smiled. And I smiled right back.

I gave my goals a pivot

I go to the ALS clinic several times a year, which basically is one-stop medical care for ALS patients. In my case, in a span of three hours, I see my neurologist, speech therapist, physical therapist, respiratory therapist, dietitian, and sometimes more. And the best part is that I stay in the same room while they all come to me!

The staff test and make notes of my breathing, muscle strength, speech, and more, along with answering my many questions. But after 11 years of attending these clinics, I realized there’s only so much advice everyone can give me. So, rather than not going altogether, I decided to add my goals to theirs.

I thought, “Why not use the clinic staff and their testing equipment to help validate my at-home exercise and practice sessions?” To achieve this, I adopted an athlete’s mindset and envision each clinic visit as a mini-Olympic event. Between visits, I’m motivated to make good decisions about my exercise routines, meals, sleep, and self-care.

Do you have ALS and feel stuck in old beliefs and ways of living? Try changing your perspective, pivoting your thinking, or even adopting a few of my examples. Together, we can learn to live well while living with ALS.

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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

Trevor Bower avatar

Trevor Bower

Dagmar,
Thanks, I've been there, same routines, not much has changed... and that's good thing. I'm trying to keep positive and a sense of humor. I think that goes a long way when you have this diagnosis. The blind people are very well organized nationally. If the want something they press a button and Congress seems to get it done. Is there such an organization in Washington DC for persons with ALS?

Reply
Dagmar Munn avatar

Dagmar Munn

There are several organizations in Washington focused on ALS... Besides the ALS Association, I AM ALS https://iamals.org/ is a very dynamic one you should look into.

Gwen McMartin avatar

Gwen McMartin

Thanks for your uplifting article! I was just diagnosed in October (19th) and am still getting a handle on the changes ALS has brought and will be bringing to my life. I'm 71, with lower limb onset, using AFO's and hope I will last at least 8 years so I can hang out with my grandsons as they grow. I am trying to think positive and am thankful for my ALS clinic team, Family and friends, especially my dear friend Lolo who is now living with me and is a HUGE help around the house. Changes are coming . . .packing, selling my house, buying something 1 level that can be adapted as this progresses.

Reply
Dagmar Munn avatar

Dagmar Munn

Sounds like you are taking the right steps Gwen. Your symptoms parallel mine... perhaps my posts on my personal blog ALS and Wellness Blog https://alsandwellness.blogspot.com/2015/01/welcome.html, will give you helpful tips on how I've managed my ALS these past 11 years. Best regard, Dagmar

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