No Room for Pride when ALS Is Involved

Rick Jobus avatar

by Rick Jobus |

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“Humility is nothing but truth, and pride is nothing but lying.” ―St. Vincent de Paul

I never knew the comical extent of my pride until ALS hit me. Prior to its impact on my life, I prided myself on my independence and the manner by which I presented myself to the world. In my mind, I was fully self-reliant, and while not a fashionista, I was ever mindful of people’s perception of my appearance.

ALS led me to first become aware of, and later a fan of, ankle-foot orthosis. An ankle-foot orthosis, or AFO, is a support intended to control the position and motion of the ankle, compensate for weakness, or correct deformities. In addition to other applications, AFOs are used to control foot drop caused by a variety of neurologic and musculoskeletal disorders. By definition, they are conspicuous. By design, they are unnatural. By intent, one depends on them.

The goal of AFO use, to combat foot drop, is ideally accomplished by stabilizing the foot and ankle at a right or acute angle, thereby providing toe clearance during the swing phase of a gait. This helps decrease the risk of catching a toe and falling. As I was experiencing moderate-to-severe left foot drop, depending on my level of fatigue, my primary physical therapist recommended an AFO. Not only for safety but also to compensate for my thigh muscles having become quadriceps-dominant, thereby making me prone to knee hyperextension and related joint damage.

Rather than being thankful for the expert input, I was horrified by the anticipated visuals of the prospect. However, not wanting to risk alienating my newfound ally, I grudgingly agreed to proceed. In the off-chance circumstance that I would ever don the contraption, a pressing question emerged: Just how does one accessorize with a lone, large footprint, heel-to-knee, plastic, beige brace wrapping around 300 degrees of the circumference of one’s appendage?

The practical answer is by a trip to a shoe store. And not just any shoe store. You see, owing to the increased amount of space my brace-enhanced left foot was occupying, I went from an already clownish size 13 to a positively Mesozoic 16, EEE. Whether by coincidence or a savvy understanding (pun intended) of the AFO consumer market, an “extended sizes” shoe shop was just down the road. It was there that I was outfitted for one leisure, one dressy, and one cold weather “pair” of shoes. My receipt accounted for six pairs since each duo comprised dissimilarly-sized elements.

My impractical response to the sudden accessorizing dilemma was initially to not wear the $1,000 behemoth at all. Succumbing to pride, I somehow concluded that my spot on the local social spectrum would be irreparably devalued if I were to be spotted out and about sporting a left leg brace and wearing two shoes of different mothers. Mind you, l had lived in my community for less than a year, and only had extended conversations with a variety of work acquaintances, all of two neighbors and one periodic golfing partner. Yet, operating under a flawed, toppling dominoes theory (not unlike the one that compelled the U.S. to remain in Vietnam), pride kept on fighting.

All that it finally took for pride to concede was an embarrassing fall in a crowded gas station parking lot that the AFO would have prevented. As a throng began to form around me; as blood trickled from my forehead, chin, elbow, and knee; as pain began signifying that various locations on my body required attention; I had an unlikely (and, I’m sure, out-of-context to the onlookers) reaction. I began to laugh. By literally kicking me to the curb, my pride managed to motivate me permanently to return the favor.

From that point forward, l have gleefully gobbled up every invitation to avail myself of any mechanism or method that may make life even fractionally more livable. Oh sure, there are days when I must seem to be relying on something, or someone, to ambulate, communicate, bathe, eat, breathe; in short, exist. It’s true. My abundance of blessings keeps me afloat in what can be rather turbulent waters.

Blessings … now that’s the stuff to be proud of!


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.


Diana Garcia avatar

Diana Garcia

Thank you for putting my thoughts on paper.

Pat avatar


I could add to that....
I perfectly identify with your feelings Rick. First I was advised not to wear sandals, my right foot was showing signs of foot drop. In the middle of summer it was "unacceptable" in my view. And I fought it for a while.

After sometime I needed an AFO. I hated it, my gait was even more awkward.
Then... a few months later my left foot also needed one. Now I can hardly stand without them!

Goodbye nice looking boots in different colors, or those comfortable tennis shoes. Never wore stilettos but used to love my low heel shoes that went perfectly with certain outfits.
I feel like we are also destined to look less than our best. Drying and styling my hair eventually will not be possible for me to do. I am considering teaching my husband how to apply make a little makeup. His sense of humor keeps a light mood, he offered to take a short curse in cosmetology.... :)

I don't know about you but wearing an AFOs are not the only way that my pride is suffocating. Jeans are almost out of the question. I always took pride on dressing well, nice materials like linen were among my favorites. Try wearing linen while sitting all day. Looking fashionable is slowly giving room to being comfortable....

All those thoughts so vain, because ALS makes everything irrelevant. I would gladly give up everything and dress like a bum if I could move and walk as before.

Rick Jobus avatar

Rick Jobus

Pat....don't get me started about clothes.

James Smith avatar

James Smith

I am in the early stage of ALS diagnosis and still dealing with the demons of my newly found disease. I was always someone who was rarely ill and always rebounded in short order whenever I was ill.
I am currently dealing with the clumsiness in the changes in my walking gait and have played with different sneakers(New balance) with custom inserts that made my walking somewhat clumsier to another pair of sneakers with the Walk Fit inserts that I have used for over 8 years and found my footing suddenly seemed improved.

Patricia avatar


Thanks for bringing up this issue. When I got my AFO, I gave all my shoes away and now I wear “nun’s shoes.” I handled that okay but transitioning to a wheelchair has really hurt my pride. I used to run. I used to swim. Now I buy no-iron travel clothes for sitting in a wheelchair rather than traveling. The blessing is facing that pride and also all of the kind people around me.

Shelley Steva avatar

Shelley Steva

I have AFOs too. They might hurt the pride a bit but you can still live life with them. People have been so kind that it has been wonderful. It often feels so humbling to see all their kindnesses. yes new balance shoes are great!

Suzanne Lee Akerman avatar

Suzanne Lee Akerman

I love my two AFOs. I wear them with pride as I am now partly bionic with ALS. I have problems with pressure points the AFO puts on my main ALS foot. Not much room for thick socks. Can't get on two pairs of shoes I bought to wear with my AFOs after the Orthotics guy added arch support to take weight off of my heel. The pair I can wear has openings so I can move my big toe when it wants to turn under putting the shoe on. I had an AFO on my other foot 25 years ago, but couldn't function as an Rehab RN with it on, and subsequently had many toe catches and falls without it. Oh, well. Went from a 7 Narrow to 8.5-9 Wide for AFOs. Sometimes I have knee hyperextension in my "good" leg which scares me as I lose the support I need when going down stairs.

Joan Roy avatar

Joan Roy

I have just been diagnosed with ALS! I find that reading all the comments is very helpful and interesting! Thank you for posting!


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