Appreciating the Small Victories While Living With ALS

Kristin Neva avatar

by Kristin Neva |

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My husband, Todd, has ALS and is paralyzed, so not only do I cook all the meals, but I also feed him. His meals are often rushed or delayed because I’m running our daughter, Sara, to dance practice or wherever else a busy 16-year-old needs to go. There are times when it’s difficult to leave Todd at home alone, such as when I need to clear his lungs or he needs to use the bathroom, so we were looking forward to Sara getting her driver’s license.

Sara started the process last summer with classroom and behind-the-wheel instruction, and she passed the written exam last winter to get her driver’s permit. Before she was eligible to take the road test, she had to log many permitted driving hours, plus a few hours with me in the car, including at night. But she still had to learn how to parallel park.

Last week, Sara auditioned for a role in a musical at a community theater. If she gets the part, rehearsals would add another activity to her busy schedule, and this taxi mom would be driving even more. It would make things much easier if she could get herself to the rehearsals, so I contacted our local road test examiner to get her on the schedule.

I thought there would be a wait, but the examiner texted me back: “Road Tests on Thursday, 9-4.” I scheduled Sara for two days later, at noon. Nothing like a little pressure to light a fire.

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Showing Love for Our Caregivers

Because we are on the far western side of the Eastern time zone in Upper Michigan, daylight extends past 10 p.m. So once it was finally dark, just before Todd’s nighttime caregiver arrived, Sara and I went for a drive to log some nighttime hours. We went to a local school to practice parking. To pass the Michigan parking test, Sara had to pull up to a line, back into a space, and then parallel park. It was clear Sara had more work to do, so the next day we set up garbage cans and laundry baskets in our driveway to mark the spaces she would need to pull into.

Todd suggested that I angle our security camera so he could watch her practice and offer feedback. She performed the maneuvers again and again, knocking over trashcans and setting them back up. At one point, Todd called her to suggest  she try utilizing her side mirrors to back into the spot. That helped a lot. After seeing her struggle with parallel parking, he called again to offer encouragement. He found and shared a video explaining how the test was scored, and suggested she not worry about hitting a few cones. She was allowed to knock over some and still pass.

living with ALS | ALS News Today | Todd sits in his wheelchair at his desk and watches security cam footage of his daughter, Sara, learning to parallel park.

Todd shares parking tips with our 16-year-old daughter, Sara, by watching a security camera set up outside the home. (Photo by Kristin Neva)

On Thursday morning, Todd’s shower aide arrived, so before Sara’s test, she and I drove to town to practice left turns at green lights with oncoming traffic. My mom then met us in town to accompany Sara during her test so that I could go home to help Todd in the bathroom and feed him lunch.

Sara passed the test, and we are pleased to have another licensed driver in the house. It is a big step for Sara on her road to independence, and for Todd and me, it is one of those rare occurrences when managing life with ALS will get a little bit easier.


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.

Comments

Stephanie avatar

Stephanie

Kristin,
I want to thank you for all your posts. You have really helped me through my husband's battle with ALS these last two years. He passed away on July 3rd. It has been so hard. But I want you to know that I admire your strength as a caregiver, as well as a mother. I have been so fortunate to have young adult children. I'm not sure I could have been as strong as you, if my children were young. I am saying lots of prayers for you and your family. My husband created a family acronym when our children were young: YAMBAILY ( You Are My Buddy And I Love You). We all have been saying it for years and even have the word as a tattoo on our arms. Keep being an inspiration to all families dealing with this horrible disease. I have wanted to reach out to you many times after reading your posts. YAMBAILY!

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Kristin Neva avatar

Kristin Neva

Thanks for reaching out Stephanie!

Maggie Broeren avatar

Maggie Broeren

Great practice ideas. Congrats to Sara! Yay for your family as your taxi Mom days are now easier.
Maggie

Reply
Kristin Neva avatar

Kristin Neva

Thanks Maggie!

Veronica Frizzel avatar

Veronica Frizzel

What about any new drugs that are available will that help slow down process? My husband just diagnosed we are checking all new drugs and amino acids.

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