My Husband’s ALS Progression Takes Us Into Another Season of Life

Kristin Neva avatar

by Kristin Neva |

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A couple weeks ago, when my husband, Todd, told me he wasn’t going to attend our kids’ end-of-the-year events at school — including our son’s band concert and our daughter’s choir concert and dance recital — it was a reality check for me about where we are in this ALS journey. We’ve been through many stages of disability and ALS progression since Todd’s diagnosis nearly 12 years ago.

Initially, Todd just had a weak arm. The diagnosis was hard emotionally, but on a practical level, daily life was normal. We tried to squeeze in experiences before life got hard functionally. We took the kids on vacation to California and went to Disneyland. We knew it would be much more difficult to travel once Todd lost his ability to walk.

As ALS progression continued, we fought for normalcy. I look back and marvel at the lengths we went to in order to do things healthy people take for granted.

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When Todd’s legs were getting weak and he used a power scooter to get around outdoors, we wanted to go to the county fair with the kids. I drove his scooter up a steep ramp into the back of Todd’s truck so we could bring it with us.

After Todd’s legs were much weaker, and before we had a wheelchair-accessible van, we went out with a manual wheelchair. Todd could get out of his new power wheelchair using the elevate function and plop himself into the passenger seat of our minivan. When we got to our destination, he could get out of the van and plop down into the manual wheelchair. But he needed more help than I could provide to transfer out of the wheelchair and back into the minivan. We’d go to a restaurant or a hockey game, and when we were ready to leave, I’d survey the crowd and pick out a strong-looking guy with a friendly face.

“Would you be able to help us?” I’d ask. I’d explain that my husband was disabled. We live in a small-town community, and no one ever turned me down.

After we got an accessible van, we went on several vacations that were a day’s drive away. Although we stayed at nice hotels, being away from our equipment felt like roughing it. The trips became increasingly difficult on Todd, and more work for me than anything that could be justifiably called a vacation.

Todd tried to get out on occasion with his friends to Applebee’s, but it became increasingly difficult to do so in the winter.

During our beautiful summers here in northern Michigan, our family would go to beaches where Todd could have a view of the lake. We were delighted when McLain State Park installed an accessible ramp down to a beach.

And for years we faithfully attended church, where my daughter and I led music for preschool kids. One Sunday morning, I cleared Todd’s lungs of secretions with a manual-assist cough before we left for church, but they filled up again on the drive to town. I asked if we should stop, but he told me with a garbled voice to keep driving. I anxiously glanced back at him in the rearview mirror until we arrived at the church, and then I hurried to clear them again.

Todd wheeled into the sanctuary. I instructed our son to get me if his dad needed help coughing and then went upstairs to play guitar and sing with the kids. As soon as music time was over, I went to check on Todd. He was doing fine, and told me he had our friend, who is an emergency medical technician, clear his lungs while I was gone.

Of course, Todd didn’t get out of the house for months after March 2020, but when we emerged from lockdowns, we found that his neck had become too weak for him to get out much anymore. He has a difficult time driving his wheelchair anywhere other than within our house.

Rather than pushing to get ready for church on Sunday mornings, we’ve just been watching online. And last summer, Todd didn’t even join us at McLain State Park. Since his breathing was getting weak, he didn’t want to go out in the humidity away from his air-conditioned office.

Todd has always made it to our kids’ school and extracurricular events that were accessible, but ALS is taking that from us now, too. He’s now using a noninvasive ventilator most of the time, and he’d rather stay at home. This is the first year our son is in the school band, and his dad will only see a video of it. Todd will miss our daughter’s dance recital, even though it is in a modern, accessible auditorium.

I’m sad that we’ve reached this milestone of the disease’s progression.


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

andy tompkins avatar

andy tompkins

Hi Kristin. I am so pained to think of you, Todd, your family, the friends that love you, and all those affected by this diagnosis.
My/our experience was very different, and my wife Kathy's progression was extraordinary in its rapidity. She was diagnosed a year after she had retired from a long and beloved career as a music teacher in a public middle school. When the doctor told us what was happening, he mentioned we could expect typically 3-6 years. She lived 9 months from that day until she passed away. We never experienced a leveling off of symptoms. For the first 4 or 5 months, we told ourselves we could enjoy life if the disease remained stable at this plateau or that plateau. I could lift her here and there as necessary. She could eat and talk, and move her arms somewhat, as her legs quickly became useless appendages, unless you count pain, discomfort, frustration as useful.
But after a time where we had whatever hope of enjoying some quality experiences, we stopped saying to each other, "if the progression just stops here for awhile, we can deal."
It's been just over a year since she took her last breath in the bed next to me. She was a year older than am I, and the milestone I reached yesterday was the day my lifespan equaled in years, months, and days, hers. So every sunrise I see now is one she didn't get to count in her life. Don't know why this seems especially poignant. It's a weird thing to focus on. I was already a widow with three children when I met her 25 years ago.
I miss her terribly of course. May no pain further befall your family.
I feel for you.
~ andy tompkins, syracuse, ny

Reply
Kristin Neva avatar

Kristin Neva

Thanks for commenting, Andy. I'm sorry for your loss.

Jessie Towbin avatar

Jessie Towbin

Kristin,
I am a PALS with two kids, 14 and 18, and I can relate very much to your losses. My ALS has progressed to the point where I prefer to stay in my home. My older son will graduate high school in a few weeks. I'm grateful that I am still here to see it. At the same time, I'm dreading the discomfort and exhaustion that will ensue. I hope that it is at least a comfort to know that you are not alone. That's what reading your posts does for me.
~ Jessie Towbin
Seattle, WA

Reply
Kristin Neva avatar

Kristin Neva

Jessie,

Glad you will be able to see your son graduate! Thanks for commenting. It is good to know we are not alone.

-Kristin

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