Ordinary Outings Are Arduous with ALS

Ordinary Outings Are Arduous with ALS
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My Facebook friends post accomplishments like completing a 5K run. If I were to post my accomplishments, I would include taking my husband, Todd, to my daughter’s school concert. Going on a simple family outing with ALS can be challenging.

With about 200 inches of snow falling annually, traveling is touch-and-go during winters on Michigan’s Keweenaw Peninsula. Sometimes the roads are impassable in Todd’s front-wheel drive accessible van.

The snow had been accumulating fast the day before our daughter’s band and choir concert. I told Sara, “If it’s like this tomorrow, Dad won’t be able to come.” I’d still be able get her there in my all-wheel drive vehicle, but no event is worth the risk of Todd being stranded in his 400-pound wheelchair.

The snow had tapered off the next day, so it was possible to get Todd out of the house. I asked my cousin to plow our driveway again after he got off work. He said he could get it done in time for us to get Sara to the school auditorium by 6 p.m.

I left to pick up the kids from school. Sara’s school parking lot and sidewalk were covered by snow, but hopefully that would get plowed before the concert. I popped into the auditorium to reserve seats.

Last year, someone was sitting in the companion seat next to the wheelchair space. Todd pulled into the spot, and I asked the man if he could move down so I could sit next to my husband.

“I’m saving that seat for someone,” he said, even though there were plenty of open seats throughout the auditorium.

“Well, he’s paralyzed,” I told the guy. “So if he needs an itch scratched, that’s on you.”

“I’ll be fine,” Todd said.

My son, Isaac, and I found seats farther up. Todd said that after 10 minutes, the guy’s friend didn’t show up and he got up and stood in the back. Maybe he felt bad about not giving up the seat. Or maybe he was worried Todd would ask him to scratch an itch.

This year, I taped signs on the seats next to the wheelchair cut-out with our name and an explanation. “Reserved for the Neva Family. (Wheelchair).” There is only one accessible spot and Todd is the only one I’ve seen at the concerts in a wheelchair.

I dropped off Sara at dance class and rushed home to help Todd in the bathroom and get him bundled up for the winter weather. Earlier in the day, Todd had his bath aide put his snap-up pants under him, so I snapped up the sides and wrapped him in blankets. I put foam pads under his arms and hands, and his poncho around his neck. I put on his shoes and seat belt.

I hurried back to town to pick up Sara from dance, and I grabbed dinner from the grocery store deli. We ate as my cousin finished plowing our driveway. My son loaded Todd in the back of the van, and I drove cautiously out of the driveway, attempting to avoid ruts so Todd’s head wouldn’t bounce around too much.

When we reached the school, I surveyed the parking lot and sidewalk. There was still too much snow for Todd to traverse in his wheelchair, and too many people were shuffling in for us to back the van close to the door. Fortunately, I had previously figured out an alternate point of entry.

The kids got out of the van. While Sara went in to warm up with the band, Isaac walked through the school to open the door to the back parking lot. Todd and I drove around, and I parked his accessible van on the sidewalk next to the door. Todd wheeled in easily, keeping the snow off his footrests by tilting back.

Our seats were open, the choir and band were wonderful, and we enjoyed the evening.

Another few inches of snow had fallen during the concert, so I grabbed a shovel from the vestibule and cleared a path to the van. We had whiteout conditions on the drive home, but I was able to follow the taillights of the car in front of us, and I navigated in my lane with the help of the Michigan rumble strips along the middle and side of the highway.

As I pulled into the garage, Todd said it was the worst weather he had been out in since he had been in a chair. But we did it! It’s incredible how much work it takes to have an ordinary family outing, but it felt good to be a part of the community.

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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 Services, and are intended to spark discussion about issues pertaining to ALS.

Kristin Neva is an author, blogger, mother of two, and caregiver for her husband, Todd, who has ALS.
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Kristin Neva is an author, blogger, mother of two, and caregiver for her husband, Todd, who has ALS.

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8 comments

  1. KG says:

    You are an amazing caregiver & loving mother & wife! I can’t believe people, you got some who go out of their way to help & others who are clueless (like the guy who wouldn’t give up the chair).

  2. Mike Seward says:

    My wife passed away Sept. 20th after a four year battle with ALS. It is so hard to describe to people what it is like for our warriors. Only a few people understand what is going on or this just want to ignore it. I leave in Vermont so I know exactly what you are talking about. God bless you for what you are doing. I know I was the sole caregiver. Take care of yourself too.

  3. Marcie says:

    Kristen,
    You mentioned snap up pants. Where did you find them? This is something I definitely need for my husband who has ALS.

  4. richard fredericks says:

    We, (me as the patient and my wife as a caregiver), are learning these lessons. An outing in the cold New Hampshire winter is a Jack London style adventure. Removing snow and ice, dressing rigid limbs, fumbling with straps and lifts, and navigating icy parking lots are all part of the new normal. But the outings are valuable. Even a trip to the supermarket is a signal that I remain part of the larger world.

    We live in a small town. I’ve notice an interesting schism in my social network. While navigating the aisles of the supermarket, I bump into many friends and acquaintances. Some avert their eyes. After all, what do you say to a friend in a power chair with a hat that is a bit askance? I know the signals and am willing to let them off the hook. In other cases, friends will engage at length. Ultimately, I think about a sign saying, “talk to me, I’m fine.” After all, I’m still navigating the big world under the watchful eye of a beloved companion. She is always willing to undertake the arduous process of a winter’s expedition. I think the crooked hat is her way of saying, “we’re still having fun with all of this”.

  5. Dorothy says:

    You are all saints that care for your loved ones I was just diagnosed and am joining this group in looking to find tips and hints to staying healthy as long as possible.

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