Mark’s Journey - Living With ALS

May 3, 2022, one of the darkest days of our lives, my husband Mark was diagnosed with ALS.

We had driven 30 miles through a torrential rainstorm, nervous to meet with the neurologist yet confident we had figured out what was causing Mark’s muscle atrophy: a disease that was severe, yet treatable and even reversible. We were looking forward to the relief we’d feel once the doctor confirmed our diagnosis.

So we were stunned when the neurologist said ALS. I actually argued with him, pointing out that many diseases can mimic ALS. As if he didn’t know that already.

Instead of being offended, the doctor, a kind and gentle man, patiently explained that he had considered all those possibilities as well, but based on Mark’s symptoms, test results and physical exam, he was pretty certain it was ALS. He also said he certainly hoped he was wrong, as this was not his specialty, and encouraged us to get a second opinion.

It’s impossible to explain what it’s like to receive news like that. To explain what it’s like when the very bottom of your world falls away. All the air was sucked out of that little room, the colors swam. We couldn’t get out of there fast enough. But the world outside offered no comfort. We got lost in a torrential downpour driving home, the sky a leaden gray that matched the depth of our despair. There was no light, anywhere.

The diagnosis was confirmed a month later when we did get that second opinion, this one from the specialist at the ALS Clinic at the Ohio State University. He told us it was time to stop testing and start moving forward.

In the year that has since passed we have been trying to move forward with strength and grace, and are figuring out what moving forward even looks like. If you know my husband, you know him as a kind and loving father, brother, husband, and friend, as the gregarious neighbor always waving hello from his garage. You know he is a sculptor with immense talent, a lover of music, and an avid Steelers fan. To me he is my husband, my best friend, my MacGyver. If something was broken, Mark would find a way to fix it.

He is also my business partner. Twenty years ago I started a specialty foods business with Mark’s help, then fourteen years ago he quit his job to work with me full time, side-by-side. It’s a very physical, hands-on, occupation, as we produce everything ourselves and do six to seven farmers markets a week.

But now Mark’s participation in the business is minimal at best. I try to stem my anxiety as I confront the future of our business and face the uncertainty of it.

We are trying as well to face the reality that disease is robbing us of the dreams we had always held for our future. Time is precious, and we are spending it making memories with our family and friends as we face the uncertainty of the future.

What is not uncertain is the cost of the challenge we face. ALS is called the “bankruptcy disease” for a reason: it is a disease that can leave your family with a legacy of debt. The estimated annual cost per ALS patient in the United States is $143,000, with direct costs such as the supportive equipment Mark will need as this disease progresses, hospital stays, and medications, including possibly the newly approved Relyvrio. And then there’s the fact that we will need to modify our home to accommodate Mark’s decreasing mobility, from railings to ramps to a major overhaul of our bathroom to make it accessible. And then there are the indirect costs of loss of productivity and the need eventually for in-home caregiving help.

I would like to think we could handle all of this by ourselves. After all, we created our own business and remodeled our own house in 2005. But I am realizing now that we cannot. The thing is, every person has their own challenges, so to ask for help feels selfish at best. Yet I have been encouraged to do so by friends and family, people whose opinions I trust.

So I ask, humbly, that if you are able to give, please help us face this fight.

“Once in a while

you get shown the light

in the strangest of places

if you look at it right.”

~from “Scarlet Begonias” by the Grateful Dead, Mark’s favorite band

With sincere thanks,

Kyla and family