‘How rolling my ankle accelerated debilitating symptoms of my life-changing medical condition’

Jeff Harmon explained the moment he felt “pushed the fast forward” button on his Adrenomyeloneuropathy (AMN) after being diagnosed 7 years prior to the turning point.

Jeff Harmon reflects on his journey with Adrenomyeloneuropathy (AMN) which began more than 19 years ago(Image: Jeff Harmon)

Jeff Harmon was diagnosed with Adrenomyeloneuropathy (AMN) when he was 32-years-old in 2006, but the turning point of his condition didn’t come until seven years later, while he was visiting Princeton, New Jersey.

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AMN is a rare neurological disease that impacts the spinal cord and peripheral nerves leading to muscle weakness and difficulty in walking, and is a disease that Harmon’s doctor told him at the time he had only seen one case of in the past 30 years. Despite having the rare disease, Harmon will be climbing Mount Kilimanjaro in September – in a wheelchair.

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Harmon explained that while walking out of a parking garage in Princeton, New Jersey in 2013, he used a cane to help him walk as his gait was getting “wonky”. Harmon took a bad step, rolled his ankle and broke his tibia and fibula. Harmon explained that it was such a serious break that he had to stay at the hospital, undergo surgery and he was “entirely immobile” for some time.

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“What that did is it hit the fast forward button on AMN and its impact on me as I never got back to where I was. I think that was the moment when we really looked at our life, my wife and asked,‘What is this going to be? Is my life getting smaller? Am I going to be sort of on the sidelines of life?’” Harmon exclusively told the Mirror US.

Jeff Harmon will be climbing Mount Mount Kilimanjaro in September with his team More Heart Than Scars(Image: Jeff Harmon)

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After he broke his leg in 2013, Harmon witnessed a significant change in his walking over the span of the next three years. Even though he was using a cane almost full-time, his wife didn’t think that was enough to support him.

“My wife looked at me and said,‘you have to do something different’,” he explained.

Harmon added that the two of them started to make other changes to their daily life, like moving out of their 100-year-old home that had multiple floors and into a ranch style house in Parsippany, New Jersey.

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After some time, Harmon agreed with his wife and started to consider using a wheelchair. The decision came with many new changes for Harmon, like how he viewed himself – especially when it came to his height.

“I’m quite tall, taller than the average person. I’m six foot three. My height has always been part of my identity. And so the idea of going into a wheelchair, that was challenging as well. Really a dramatic shift in how I saw myself and my identity, I was no longer the tallest person in the room anymore.”

In 2016, Harmon decided to start the process of going into a wheelchair, saying it felt not only like a “natural thing” to do but “the right thing to do”.

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“But what I’ll say about that is that getting into that wheelchair was transformational. It allowed me to move freely and move quickly and do things in a more active way than had been really the case over the last three years or more before I got the wheelchair. So it really opened up a world of opportunity for me and what might be possible.”

Harmon says although transiting to a wheelchair was ultimately a positive experience, it still came with its challenges.

“Life improved dramatically by going into the wheelchair. You have to realize before the wheelchair, I was using a cane. I moved very slowly in everything I did… So in some ways, moving to being in the wheelchair just transformed my experience in a positive way of what I was able to do that I hadn’t been able to do for the previous years, a number of years. So in many ways it was extremely positive,” he explained.

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“It’s a little challenging if I have to get something from the top cabinet and the kitchen or I’m limited in some ways in some of the stuff I used to do, but by and large, it’s all positive,” he added.

Harmon gives credit to his friend Chris Kaag, founder of the IM ABLE foundation, who also has AMN, saying that meeting him during the transitional period of his life was “life-changing”

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“I met him, and that was life-changing, just to see him living his life the way he lives and the impact he’s having on people,” he said.

“He has the same disease that I have. There’s not a ton of us around. And so to have that as inspiration, to have him as a friend, was huge in this,” he added.

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Overall, Harmon said that he has no regrets when it comes to his journey with AMN.

“I mean, my life is amazing. Of course it was not fun to have a broken leg and be in the hospital down in Princeton an hour and a half away from home, and that whole journey being in rehab, I mean, of course there’s things that would be great if that hadn’t have happened, but I have no regrets”.