United We Stand, Divided I Fall

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by Rick Jobus |

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“It wasn’t me she was foolin’,

‘Cause she knew what was she was doin’,

When she told me how to walk this way.”

Run-DMC’s hip hop adaptation of the Aerosmith classic “Walk This Way” conjures up images of every therapy session I’ve had during the ALS portion of my life. Be it physical, occupational, speech, or respiratory therapy, it was the disease that we aimed to fool via the therapist’s imparted wisdom.

The first physical therapist (PT) I interacted with post-diagnosis literally instructed me how to walk, albeit with an ankle-foot orthosis (AFO). On a level surface, she’d have me practice walking a square path: forward, then side to side to the right, followed by backward, and finally, side to side to the left, which returned me to the starting point. She also guided me up and down both a ramp and several flights of stairs. Quickly, the AFO became second nature.

She clearly knew what she was doing, as did the 19 therapists who followed her as allies against ALS. They all have creatively applied their considerable acumen to both relieve burdens and add fulfillment to my life.

One speech therapist (ST) fashioned a mechanism to enable me to exercise my tongue and jaw. Her resources were two rubber bands, two tongue depressors, and a single board game playing piece. From those austere assets, she crafted a resistance device that the folks at Bowflex would envy. My chewing and articulation benefited as a result.

To address my declining ability to pronate and supinate my wrists, an occupational therapist brilliantly thought of a carpentry hammer as a facilitator. The weight of the hammer’s head as I turned my hand in either direction encouraged greater movement. Thus, my range of motion improved.

Those are but two of the numerous examples of novel therapy approaches taken with me. Beyond creativity, I’ve also received many generous overtures beyond the call of duty.

For example, after my Medicare coverage had been exhausted, one PT made arrangements to allow me “unsupervised” access to the outpatient facility. He then advised me of the times in his schedule devoted to paperwork. I would visit during one of those interludes and follow his prescribed regimen under a partially watchful eye.

Once an ST came to my rescue while interrupting a period of intense study in pursuit of her master’s degree. Upon learning that my speech-generating device was on the fritz, she dropped everything to focus — uncompensated — on restoring its function. After three hours, which included several phone calls with the manufacturer’s service department, it was a masterful mission accomplished.

I’ve received faithful sponsorship of my ALS fundraising goals from many in my therapist pool. An ST and her husband even accompanied me during a charity walk.

Recounting these priceless episodes leaves me beyond grateful. This is particularly true when an attending therapist is overcome with emotion after I accomplish a session goal that would be trivial by normal human standards. Twice, tears have flowed, and they weren’t mine.

The first time was when I achieved the improbable therapy goal of making my way outside to a balcony. Owing to foot drop, I couldn’t safely get over the modest height of a sliding door frame. However, that day, the attending PT ingeniously observed that while backing up prior to taking a seat, my heel rose high enough to clear the entry. Later, while sitting outside, I commented, “Thanks to your ass-backward idea, I’m in my favorite spot for the first time in over a year.” Tears welled up in the corner of his eyes.

The second time occurred four years later with a different PT. I was no longer able to walk. My legs had only the faintest trace of voluntary movement. During her final visit, as a byproduct of her yeoman effort, I was able to raise my legs two inches off the floor and hold them aloft for five seconds. She openly wept.

The World Health Organization describes rehabilitation — essentially therapy — as “a set of interventions designed to optimize functioning and reduce disability in individuals with health conditions in interaction with their environment.” Medicare is consistent, basing coverage solely upon the beneficiary’s unique condition and individual needs, without regard to prognosis.

That is precisely what my team of experts has done. They’ve optimized my functionality within my environment, irrespective of the ultimate endpoint.

In the “slip-sliding away” world that ALS promulgates, at best, it’s one meager step ahead followed by two large strides back. The therapists who’ve been assigned to me have lengthened forward progress while shortening, or postponing, setbacks. They help keep me upright — previously literally, and now figuratively.

As the prophet Isaiah wrote: “If you pour yourself out for the hungry and satisfy the desire of the afflicted, then shall your light rise in the darkness and your gloom be as the noonday.”

My therapists have. I pray that their divine reward is forthcoming.

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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

Ellen Brockway avatar

Ellen Brockway

I love reading Rick Jobus column

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chris john Beutler avatar

chris john Beutler

This is a profound view of creativity to help those with ALS. I too have been amazed with Therapy that is keeping me mobile.

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David Crellin avatar

David Crellin

Oh how I wish the US would understand the benefits of the UK's National Health Service. I also wish our conservative ( right of centre) government would also value it and stop trying to privatise it.
I have paid National insurance contributions throughout my working life, as an employee, a CEO and self- employed. This entitles me and everyone else to health care free at the point of delivery. I have been astounded at the unstinting support I have had. My rollator, riser/recliner chair, all the aids round the house were provided free of charge. I even receive state benefits and a free pass to allow me to park in reserved bays. All this is for someone who has a private & state pensions, owns a large property, etc.
This system was developed after WW2 by a socialist government. The word 'socialist' needs to be fully understood and not reviled.
End of diatribe.

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Tom Hehir avatar

Tom Hehir

Thanks so much Rick. I couldn't agree more. My therapists have been amazing. By the way, the cite from Isaiah is perfect.
Tom

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Brenda Brown avatar

Brenda Brown

My husband and I have been following you through your columns and we are always moved by your sincerity. We, too, have been helped by dedicated and creative therapists who have gone far beyond their call of duty. Thank you for lifting us up. Praying that you continue to find joy.

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Linda Miller avatar

Linda Miller

Thank you so much, Rick, for the heartwarming columns you write. You open our eyes to the lives of others and the difficulties you and others strive with daily and the wonders health care workers can achieve.

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