Chapter 30: Wheels

 Over the last couple of days, it quickly became apparent that lurching down the hallway was not going to be sustainable. The hospice nurse suggested using the power wheelchair in the house, but Jeremy was concerned about scratching the moldings and said the manual wheelchair would work better. Ok! All good! Let’s do it!

We are now transitioning from bed to wheelchair to recliner as needed throughout the day. It takes two of us to get Jeremy upright, keep him there, and adjust sweatshirts and blankets. He tends to lean backwards and he falls ungracefully into whatever chair awaits him. Once he is situated he tends to stay for hours… which I’m not entirely sure is a good thing. But he gets to call the shots.

Chapter 29: Baby steps

 Jeremy is much more frail this week. He needs help getting up from his office chair or recliner, and once he is on his feet he struggles to walk even a short distance.

He is restless during the night and spends the early morning hours sleeping in his recliner. Around 10:00 he goes into his office where he watches mindless video clips. By 1:00 or so he is ready for a long nap in the recliner. 

All of this is totally fine of course. He can spend his days however he likes. But it’s a big change. He looks exhausted and it’s clear that he needs 24/7 attention. 

Chapter 28: Hospice came and God showed up

 We have been thinking for a while that in home hospice care might be helpful. Jeremy needs help with dressing, showering, tube feedings etc - and while we are all here to help, there are certain tasks that are getting more difficult (showering in particular). 

Normally, to qualify for hospice you need a prognosis of 6 months or less. But since ALS is invariably fatal, the rules can be bent a little. We had a hospice rep come to the home, and the benefits are pretty amazing.

Medicare pays for all of the hospice services, including supplies, medications, in home nurse visits 2x a week, caregiver visits up to 5x a week, 24/7 phone access, emergency home visits, etc.

Yesterday the enrollment rep Kyle came to the house. At first he was a little cold and clinical. He took Jeremy’s vital signs, asked a lot of questions and took a lot of notes. It was a little uncomfortable until Jess broke the ice with a comment about how their girls refuse to watch movies “from the 1900s.” He burst out laughing and the whole situation relaxed.

A few minutes later, Kyle noticed a framed poster on the wall, with the lyrics to a Christian song called “He Won’t.” Jess had it made for Jeremy’s birthday and it’s in a prominent place in the living room so Jeremy can see it from his favorite recliner.

Kyle’s eyes went wide. “Those are song lyrics,” he said. Jess said yes, it’s been their “anthem” ever since the diagnosis. “That’s amazing,” said Kyle. “I was an atheist all my life but I found Jesus about a year ago. The first time I went to church, that was the first song they played.”

He talked about his faith and his wonderful church and told us the church had recently videotaped his testimony and was going to use it to open the Easter Sunday service. Jess shared some of their story as well, including how God used friends to bring them together and how He has always been a faithful presence in their lives.

The song that means so much to all of us is Firm Foundation (He Won’t) by Cody Carnes

https://youtu.be/uOP4s8fOEm0?si=mDecmdf8yu58IV8y

Chapter 27: Friends

 Jeremy is an introvert. So am I. But while I have, like, one high school friend on Facebook and pretty much have lost contact with everyone from college, he has many deep and lasting relationships.

This weekend he will be visited by a man who says Jeremy was his first friend, ever. The friend is driving all the way from Memphis to see him.

He had a visit from Kai, a German exchange student from their high school days, and they now FaceTime on a weekly basis.

He has kept in touch with his best man from Seattle.

He is deeply missed by his coworkers, who have stopped by to see him.

He has supportive friends from church who bring meals and pray for the family and come visit.

Next Sunday, in honor of his 51st birthday, friends have been invited to stop by for ice cream. It’s an open invitation and we are planning for 200 people. I hope it’s an amazing celebration, and a joy for him to see how many people love him.

Chapter 26: Time

 It’s been 54 years since I met Tom. We were babies.

It’s been almost 50 years since we got married. Still babies.

It’s been 48 years since we became parents.

It’s been 18 years since we became grandparents.

It’s been 14 years since we last saw our son Jim.

It’s been 10 years since we moved to Tennessee.

It’s been 3 years since my sister was diagnosed with cancer.

It’s been 6 months since Jeremy was diagnosed with ALS.

It’s been 3 months since he was able to go to work.

It’s been 1 month since he was able to eat.

It’s been about a week since he was able to talk.

Chapter 25: ALS Clinic

 The gold standard for ALS treatment is a multi-faceted ALS clinic. We are very fortunate that there is an excellent clinic just minutes from the house, at UT Southwestern. 

Patients are seen at the clinic every three months, with various specialists rotating through the room. This is so convenient, because the patient and family can just stay put. They are very efficient - while one specialist visits with the patient, the next is literally waiting in the hallway. Still, the process takes several hours.

Today was Jeremy’s 3rd clinic visit. I remember the first visit last August. He could still speak quite well. He walked easily. He was eating without much trouble.

Today, the doctor watched closely as Jeremy struggled to speak. He checked various reflexes and asked some basic questions and acknowledged that things have changed since the last visit.

Jess broached the subject of hospice with the social worker, and it was clear that it’s not too soon to start thinking about it. No decisions need to be made right away, but it will most likely be a good move at some point. 

Chapter 24: Progression

 ALS is both predictable and unpredictable. It’s a progressive disease but it can move slowly or quickly. It affects various muscles but can start in the legs, arms, hands, or vocal cords. For one friend of Jessica it started in the big toe.

When Jeremy was diagnosed (August 2025), a friend told me to expect periods of decline followed by “plateaus.” I was doubtful at the time because the progression had been so fast. We didn’t really see any plateaus for the first few months. After that, sure enough, there would be weeks when things seemed to stabilize. 

Unfortunately, once this disease takes hold there is no turning back. The plateaus offer a little respite but there are no upswings.

Eric Dane passed away today from ALS, and I watched his “Final Words” interview on Netflix. In addition to his sweet messages for his daughters (be brave, find your purpose, and live in the moment), it struck me just how rare this disease is (about 2 new cases per 100,000 each year in the U.S.) and how many people know little to nothing about it - including medical professionals. 

I hope that by writing about Jeremy’s situation I can encourage people to learn more. Even though it’s rare, each of these lives is precious. And each ALS story has profound lessons for the rest of us.