Circling Back Around: Finding Patterns in Life With ALS

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by Kristin Neva |

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I remember those days when it was hard to get out of the house with our newborns. Two weeks after our daughter was born, my husband, Todd, and I celebrated Valentine’s Day with dinner at home. Todd bought jewelry for both Sara and me.

Life has patterns and seasons, and sometimes it circles back around. We’re at that stage again where it’s hard to get out since Todd has been paralyzed due to ALS.

finding patterns | ALS News Today | Kristin holds her newborn daughter, Sara, while looking at jewelry boxes next to a vase of red roses.

Sara’s first Valentine’s Day. (Courtesy of Kristin Neva)

Two years ago on my birthday, I took Todd and our two kids to a nearby state park that has an accessible path down to the beach. Todd drove his power wheelchair close to the water, where we watched the kids play in the sand and walk on the breakers guarding the north entrance to Michigan’s Portage Canal.

Last year, we celebrated my birthday at home. Todd didn’t have breathing assistance at that time, and it was too humid to even consider an outing. He didn’t get to see Lake Superior at all last summer, and he didn’t get to the county fair, which was typically a favorite summertime activity for him, because his neck had become too weak. It’s difficult for him to ride in the back of our van, because his head bounces around every time I hit a bump. And it’s hard for him to drive his wheelchair on anything other than a smooth, level surface.

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Todd has since started to use noninvasive ventilation most of the time, but he doesn’t feel comfortable being out in public with a tube attached to his nose. He prefers to stay home in the comfort and privacy of his air-conditioned office.

On my birthday last Saturday, I stepped onto our patio and into a perfect Upper Michigan summer day. It wasn’t windy or humid, and the temperature was in the high 70s — not too hot, not too cold. I asked Todd if he wanted to try going to the lake. He agreed cheerfully. I knew it was only because it was my birthday, but I was glad we could go on a simple family outing. He even suggested we go out for lunch before heading to the beach.

Todd didn’t want to wear his ventilator. He said his lungs were doing much better now that he had been using it for a while. I brought it just in case, and we drove to town and ate at a restaurant for the first time in a year. We took the highway along the canal to where it connects to Lake Superior, and at McLain State Park, we ate ice cream in a shelter surrounded by white pines and mature oak trees. The kids led the way, and I walked behind Todd as he rolled down a concrete path to the beach. I sat beside him on a boardwalk close to the water, Sara and Isaac sat in the sand, and we took in views of the lake.

The drive home was rough and slow going. Instead of taking the canal drive home, we took the back roads, which are a more direct route, but one gravel road was so washboarded that it seemed like our accessible van was going to rattle apart. And I had to drive slowly even on the paved road, because the large bumps were too much for Todd’s neck.

Although Todd seemed to do fine without the ventilator, he was eager to get hooked back up to it as soon as we got home.

As I was setting him up on his computer, I said, “If we go to the lake again, we should definitely go through town both there and back.”

He agreed.

“But that wasn’t too bad, was it?” I asked. “Would you want to go again?”

“We’ll see what kind of shape I’m in on your next birthday,” he said.

That evening, we had my birthday dinner at home. Todd coached Isaac on grilling chicken legs, and Sara and my mom made raspberry shortcake. I opened my gifts. Sara gave me jewelry — a matching mother-daughter necklace.

finding patterns | ALS News Today | Kristin and her daughter, Sara, wear matching silver necklaces and smile while posing in front of a field with their arms around each other.

Matching mother-daughter necklaces. (Courtesy of Kristin Neva)


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.

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