Marking the 15-year anniversary of an ALS diagnosis

A week ago Wednesday, on the 15th anniversary of his ALS diagnosis, my husband, Todd, had a dentist appointment.

He dreaded the outing because he’s paralyzed below the neck, uses a power wheelchair, and needs breathing support. He hadn’t rolled outside of the house, not even to go onto the patio, since his last dentist appointment in the fall. Now his neck is weaker, he can no longer drive his chair using a head array, and he’s even more dependent on his noninvasive ventilator.

I began preparing that morning for the afternoon appointment, gathering everything we’d need.

I found his snap-up pants in his closet. (He usually wears shorts at home.) I pulled the travel bag for the ventilator out of the closet and packed a Resmed AirFit P30i mask, which works best for dental cleanings because the ventilator tube goes up the sides of his cheeks rather than hanging in front of his mouth. I then began searching for his Headmaster collar, a supportive frame for his neck. After pulling everything off his closet shelves and digging through all his dresser drawers, I finally found it tucked in a basket of pillows and blankets.

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Getting ready to leave the house is an ordeal, but for Todd the problem is the actual travel.

Because Todd’s neck is so weak, his head bounces uncomfortably over the smallest bumps. The Headmaster collar helps keep his head from bobbing forward, but it doesn’t entirely prevent it from moving left and right. Perhaps it’d help if I could recline him back in his wheelchair, but the accessible van that we purchased for him 11 years ago forces him to sit in a more upright position.

For many years, we were happy with our 2011 Toyota Sienna rear-entry conversion, which had a short cutout for his wheelchair and the full middle row of passenger seats that allowed us to occasionally transport our children and a friend for each of them. Because it had a manual ramp, there was nothing to break down, which was important since we live in Michigan’s Upper Peninsula, hours from the nearest mobility van dealer. And with the rear entry, we could park in any space.

Todd’s accessible van was the most affordable option, and it worked well for us for years. But he’s no longer comfortable in it.

I cringed as I looked in the rearview mirror and saw Todd’s head bounce every time we hit a bump. I wondered if we should’ve chosen a different conversion option.

A long-cut, rear-entry van would have reduced our passenger seating, giving us only two smaller middle-row seats. But Todd would be farther forward, possibly making his ride smoother and allowing him to recline.

A side-entry van would’ve allowed for a full row of passenger seating in the far back, and Todd may have had a smoother ride and the ability to recline. But the side-entry vans generally have power ramps, and I’ve heard stories of them breaking down.

I think we made the best decision we could back in 2014. And now, at this stage in the disease, Todd leaves our home so infrequently that it doesn’t make sense to purchase another van.

Our anniversary lunch

We made it to the dentist, and Todd got his teeth cleaned. No cavities!

Afterward, Todd suggested we get lunch from Culver’s, and since it was a balmy, 70-degree day, I asked if he wanted to eat at the park by the canal. He agreed, and we headed there with our food.

I unloaded Todd and drove him to a picnic table. The concrete path was smooth, but we had to traverse a short, grassy patch. I cringed again, watching his head jostle as we crossed it.

As I fed him, the Ranger III, returning from Isle Royale, blew its foghorn and stopped short of the Portage Lake Lift Bridge. We watched the bridge go up and the passenger ferry pass beneath it.

I thought of all the memories we’ve made in this park over the years, such as spending time at the beach with our children and celebrating birthdays. And now we have another — lunch on the 15th anniversary of Todd’s ALS diagnosis.

We didn’t stay long. Although it was sunny, a brisk breeze chilled Todd. I snapped a picture to remember the occasion, and we headed home.

The Portage Lake Lift Bridge, where we had lunch on the anniversary of Todd’s 15 years with ALS. (Photo by Kristin Neva)

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