My ALS Superhero Goal Is to Be Stronger Than My Clothes

Dagmar Munn avatar

by Dagmar Munn |

Share this article:

Share article via email
voice therapy | ALS News Today | Banner for

When I was diagnosed with ALS, one of the many things that changed was my relationship with clothes. I used to buy and wear clothes that caught my fancy. Now, living with ALS means I’m choosing comfort and the ease of getting myself dressed over the latest trend. Has this happened to you, too?

Following is how I’ve learned to stay positive, maintain my self-confidence, and be a secret superhero despite my ALS clothing problems.

A world of heavy

My ALS symptoms began with weakened feet and legs. When I walked, my feet felt like they were shuffling along in cement blocks. Even my clothes felt heavy, especially shoes, belts, and sweaters. Getting dressed for the day became stressful, as I wrestled my way into long-sleeved T-shirts and tugged up the zipper of a pair of jeans.

I began to imagine a huge cosmic trick had been played, transporting me to a Marvel comic book world ruled by super-sized gravity and resistance.

Recommended Reading
Human Support Robot | ALS News Today | motor neuron disease | illustration of man in wheelchair

Home Test in UK Shows How Support Robot Could Help Patients

A super solution

I saw two issues. First, I needed to ditch the buttons, zippers, and fussy closures. Loose-fitting pull-on shirts and pants with elastic waists soon filled my closet. Everything that didn’t pass my “light and easy” test went into the donation box.

But I knew if I made everything too comfy, too easy, I might lose valuable muscle strength and coordination that comes with the physical movements required in getting dressed.

Those movements fall into a category called incidental movements. For example, if someone else prepares your meals, makes your bed, and fetches the mail, you’ll miss out on simple physical movements that would have provided your body, muscles, and bones with healthy activity and muscle stimulation. That results in a condition many physical therapists refer to as disuse-induced atrophy.

So, my second strategy was to change my perspective and play off the idea of my comic book world. I invented an alter ego — a superhero with superpowers and the catchphrase, “I’m stronger than my clothes!”

I know it’s hokey. But weirdly enough, it works for me. For instance:

When I’m grappling with a pair of unruly socks that refuse to slide onto my feet, I stop, breathe deep, and think, “I’m stronger than my clothes.”

When I feel like skipping one of my pre-planned moving breaks to scroll through emails, instead, I stop, push away from my computer, and tell myself, “I have to do this. I need to be stronger than my clothes.”

When I’ve successfully changed from day clothes into sleepwear without a hitch, I pause and think, “I’m grateful I’m continuing to be stronger than my clothes.”

Like I said, hokey. But it works. Try it yourself.

Have you experienced clothing problems due to your ALS? Please share with us in the comments below. I’ve found good ideas by searching “adaptive clothing” on the internet. Some helpful online adaptive clothing resources include Buck & Buck and Zappos Adaptive.

Together, we can learn to live well with ALS. And together, we can strive to be stronger than our clothes.

***

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.

Comments

Gus Gustafson avatar

Gus Gustafson

Hi Dagmar,

I am an OT. I really like your Mantra! and the whole article was great.

Reply
Dagmar Munn avatar

Dagmar Munn

Thank you Gus!

frankciampitt avatar

frankciampitt

yes the same thing happened to me it started with my workouts getting harder my weight drop and just picking up my cloths to wear were heavy it started when i was 59 the weakness and i just got married in nov of 2019 ive been to so many doctors all kinds of tests some say als its a nightmare im to a point where im giving up im stuck in a bed i can still move when im not in bed when i start to try to excise the twitching and muscles start bouncing more i cant believe this is happing to all of us i was just about keeping up with the house before i got sick with this monster and now its to a point where i can just about feed my self and use the rest room my name is frank and im on riluzole it dont seem to do anything i have a bipap machine theres so many neurologist dont know what to look for

Reply
Dagmar Munn avatar

Dagmar Munn

Frank, I'm sorry that your ALS symptoms have been so severe in such a short amount of time. Your neurologist would still be the best person to go to for medical advice. Do check out the resources available from the ALS Association, MDA Association, and I AM ALS. Or join our ALS News Today Forums and chat online with others who also live with ALS. I'm wishing you well for connecting with someone to help you. Dagmar

Dave Smiglewski avatar

Dave Smiglewski

Thank you. Good advice and, as always, good inspiration!

Reply
Phan Hien Anh avatar

Phan Hien Anh

My mother has been an ALS patient for 4 years. I need your help, please!

Reply
Dagmar Munn avatar

Dagmar Munn

Phan, I'm sorry your mother has ALS. Do check out the resources available from the ALS Association, MDA Association, and I AM ALS. Or join our ALS News Today Forums and chat online with others who care for those who have ALS.

Susie Parkes avatar

Susie Parkes

Great and informative post! Thank you. I am beginning to struggle with clothes. My path started with my left hand and has progresses to my left arm and shoulder. Taking off a coat is now tedious, as are socks and buttons and zippers and everything else. Some not impossible, but all are slow and tedious. Thank you for the adaptive clothing links, I will check them out. Sheer stubbornness has kept me going :)

Reply
Dagmar Munn avatar

Dagmar Munn

Susie, know you are not alone in experiencing "heavy clothes." I believe the answer lies in the combination of adapting/changing our clothing, maintaining what strength we have, and a good dose of your stubbornness - - to not give in! Best wishes to you. Dagmar

Linda Lennon avatar

Linda Lennon

Like so many of you I also struggle with clothes. I have also gone to the loose fitting and elastic it's still difficult to dress but to date I can at least do it myself a small blessing in this very difficult condition.

Reply
Dagmar Munn avatar

Dagmar Munn

Linda, I'm cheering for you!

Will DeShone avatar

Will DeShone

Dagmar, I am a first timer to your your article's. What a great way to help others with ALS. Keep up the good writing and keep sharing. Thank you

Reply
Dagmar Munn avatar

Dagmar Munn

Thank you for your kudos, Will. All the best to you in 2022. Dagmar

Helia avatar

Helia

This is so heartfelt and wise. I use to tell myself "you can do this" if confronted with a challenging task like, e.g. getting dressed. And it does work well. But I'll switch to your mantra which comes with a funny spark we need so much in our everyday struggle. Thanks!

Reply
Judy Silman-Greenspan avatar

Judy Silman-Greenspan

What is the brand and style of the shoes you have that accomodates your AFOs? How much did you have to size up for the AFOs. in length and/or width.

Reply
Dagmar Munn avatar

Dagmar Munn

Hello Judy, The brand that worked best for me with my style of AFOs was Hotter Shoes: https://www.hotter.com/us/en/mary-jane-shoes and the shoe style "Shake." I normally wear a size 8 Med, but with AFOs, I wear a 9-1/2 Wide. There are so many different types of AFOs that it might help for you to see a photo of mine. The photo is at the top of this blog post: https://alsandwellness.blogspot.com/2021/03/how-i-learned-to-like-my-afos.html

I hope this was helpful to you :-) Dagmar

Leave a comment

Fill in the required fields to post. Your email address will not be published.