Chapter nine: Voices

 Jeremy has always been good at imitating voices. Some of his favorites included Michael Scott fromThe Office and various slightly off-color quotes from movies. In any case, he captured the voice and the situation perfectly.

When his girls were little, this talent definitely paid off. Bedtime stories were not just amusing - they were hilarious because Jeremy would make up voices for each character. Skippy Jon Jones was a particular favorite. I think his girls will remember the dialogue.

My name is Skippito Friskito. 

I fear not a single bandito. 

My manners are mellow, 

I'm sweet like the Jell-O, 

I get the job done, yes indeed-O

Warning: buzzkill ahead

Jeremy has “bulbar” ALS which means his speech and breathing are affected, more than his legs. Most of us think of ALS peeps being bound to a wheelchair. But Jeremy is still able to walk. He uses the wheelchair if he is tired, but his main challenges are speaking and using his hands.

The first sign of trouble was in March of 2025. He had lunch with a friend and his speech was a little slurred. By the end of May his speech was a little worse and his energy levels were low. It is now late November and his speech is very difficult to understand. He speaks softly and uses as few words as possible. He often struggles to find the right word. 

It may be difficult at some point for his girls to remember his voice. Let me just say, it was soft and kind and funny. It put on silly accents to make you laugh. It will come back to you when you read Skippy Jon Jones to your own children. But you probably won’t do the voices as well as your dad.

Chapter eight: The “nice person’s” disease

We have been told by multiple health professionals that ALS tends to strike nice people. They tell stories of treating sweet, kind, lovely people who for some reason have been struck by this terrible disease.

Jeremy would definitely fit this profile. He is calm, funny and even tempered. He is devastated, of course, by his prognosis - but he tells the doctors about his deep faith. And he gives 1000% to maintaining as normal a life as possible,

When he met our daughter, they fell in love quickly. Long story. He sent me a note saying what an amazing mom I must be, to have such a wonderful daughter. Slick? Maybe. But I don’t think so. He was completely sincere.

We tease him now, saying he should have been an asshole and maybe he could have avoided this. But he’s nice. And sweet. And handling ALS as well as anyone could. 

Chapter seven: What does “treatment “ mean for ALS?

The current state-of-the-art treatment for ALS involves multi-disciplinary clinics. In theory these are wonderful. The patient and family members meet with a team of specialists every three months - the neurologist, physical therapist, pulmonologist, social workers, etc. It is honestly a great concept. But “treatment” for ALS is very different from other diseases.

I naively expected an all-hands-on-deck approach. Where does he stand? What do the metrics tell us? What interventions does he need? Come on people, let’s get this problem solved!

Jeremy had his second clinic visit today. The emphasis is clearer now. How does he feel? What does he need? That’s pretty much it.

Metrics are not particularly helpful, though family members (especially control freaks like me) would like to have them. Therapies are apt to just exhaust the patient. Ditto for extensive testing. 

The focus is on Jeremy, which is where it needs to be. He is a terrible patient in many ways - stubbornly continuing to work and refusing to use the fancy machines that will expand his lungs and suction out gunky stuff and “assist” his breathing. But if we are all on Team Jeremy, I suppose we need to let him lead the way.

Chapter six: The most painful things

 Forgive me for focusing on myself yet again but some of you can relate, I’m sure.

The most painful things right now are:

• Putting on shirts (due to the glass shards in my shoulders)
• Removing shirts (ditto)
• Flat ironing my hair - Hands above my head! Twisting the arm! Pulling through! Absolute torture.
• Unloading the dishwasher … why are the heavy plates up so high?
• Watching my sweet daughter burst into tears 
• Seeing how hard Jeremy is working 
• Knowing that my granddaughters will be shaped, in part, by whatever happens in the months to come 

Chapter five: Why are we talking about ALS?

 I don’t have ALS. My son in law does. I will call him Jeremy, because that is his name.

As I write this, it’s mid-November, 2025. The official diagnosis was on August 25th but symptoms started very subtly about nine months ago.

First, he noticed that he couldn’t sing. Not a huge deal but weird. By his birthday in March, his speech was slurred. A close friend told his wife (my daughter Jess) that he thought something was wrong,

In late May, the slurred speech was more noticeable. Walking short distances made him exhausted. Breathing seemed difficult.

By August he was having fasciculations (muscle twitches that are an indicator of ALS), his hands were curled inward, and the diagnosis was issued.

Now, he struggles to speak. He works half days because he is extremely stubborn, but the time will come soon when he will need to stop. His hands are stiff and curled but somehow he manages to carry on.

Jess and I are making small accommodations. She helps him dress. I load up his coffee maker so he can just press a button. We both cut up his meals before serving them. The constant fear is, what will happen next? 

Chapter four: What the heck is ALS?

Note: this is my simple understanding of a complex condition. Please consult a physician for accurate details and resist the temptation to rely on Dr Google, who will scare the shit out of you. 

So…… ALS is a progressive, incurable disease that involves the degeneration of nerves. When the nerves stop functioning, they stop activating the muscles. So the muscles die. Sometimes the initial symptoms are as simple as tripping, or twitching - even a single finger or toe. Other times the “bulbar” system is involved. This means that speech, breathing, and swallowing are affected first, with a prognosis even worse than Dr Google might imagine.

This is the situation we are facing. Speech is almost gone. Breathing becomes difficult with the slightest exertion. Hand function is declining rapidly, with the fingers curling inward.

And yet - he shows up in his wheelchair when it’s time to be a greeter at church. He goes to work four half-days a week. And every time I pick him up, his first question is about his daughter. How did she do this morning? Was she happy? Is she ok? (Does she know that I love her? Will she remember how much I cared?)

Chapter three: YMCA classes for the elderly and infirm

 

I have been a gym rat for years and years. For some people this might mean that I enjoy weight lifting and aerobics classes and other challenging physical activities. For me it just means that if I am bored, I go to the gym.

A typical workout for me might be a few minutes on a treadmill, a few more on a rowing machine, and then a lengthy session of stretching while listening to mellow Christian music.

Now that I am in a new place, with a new (old and creaky) set of joints, I thought it would be a good idea to join the local YMCA. 

Good idea indeed. 

I now attend chair yoga classes twice a week. I don’t do any of the arm movements because of the previously mentioned ground glass in my shoulders. But nobody cares.

My yoga friends include Betty, who had several compressed discs and is now recovering from back surgery. Cathy is there every week and we now know each other’s names (not a small thing for an introvert like me). And last  week I met Lou who says she ignored her health for too long and is now just taking baby steps towards being healthy.

Lou arrives at class with a walker. She leaves out the arm movements, just like me. She shows up every week even though it’s painful. I think that’s the most important thing. Just show up, even though it’s painful.

Chapter two: I swear

 

I am normally a sweet, non swearing person. When my kids were little we lived in Michigan which meant occasionally driving on ice. This is not fun. You may want to go in a certain direction but if you are on ice well too bad you are just going to skid.

So, as any responsible parent would do, I told my kids that you are allowed to swear if you are driving.

Today, a million years later, my shoulder sockets are apparently occupied by ground glass. When putting on a shirt of any kind, the word fuck might just slip out of my mouth. When taking off the same shirt born of the devil, my shoulders rotate through the glass in the opposite direction and shit is added to my vocabulary of torture. What happened? When will I get dressed without contortions and bad words and pleas to the God who promised me salvation? Maybe tomorrow? Please? 

Chapter 1: I am allergic to my glasses

I’ve never been good at being deathly ill. When my youngest was two I got pneumonia. His brother and sister went off to school and his dad went to work and there we were, me coughing up a lung every couple of minutes and him sweetly toddling around leaving little poop trails from his loosely fitting diapers and patting my forehead to make sure I was ok. 

My best friend called to ask if I wanted her to take him for the day. “Oh no (cough cough) we’re fine (cough) don’t (gag) worry (cough gag) about it (cough gag choke).”

She took him. He had a great day. We all survived.

Fast forward a million years.

I have now been married forever. And I have learned that no matter how sick I am, my husband will upstage me. If I get a cold, he gets COVID. If I get COVID he gets pneumonia. And if I even think about getting pneumonia…

Well forget it. Have you heard of an endarterectomy? How about two of them? (Google it)  Plus a stroke? And a five way bipass? And prostrate this and TURP that and catheters and we are not even getting to the bad stuff and I am a terrible person for keeping score. 

So anyway, I’m sure you are wondering how I became allergic to my glasses. 

Recently I had a mammogram. They said they saw a small something. It turned out to be a small cancer. No big deal. Lumpectomy, should be fine, check with your local radiologist for follow up.

Ok so local radiologist enthusiastically recommended a short 5 day course of radiation. Short! Five days! High dose but so short! Nothing to it! Short!

After the first couple of sessions my allergies started acting up. Not unusual, just sneezing and itchy eyes. By the end of the treatments I was sneezing constantly, my nose was running non stop, and my eyes were so irritated I couldn’t stand it. It occurred to me that this felt like a body-wide autoimmune issue. But surely not. I must be allergic to these new glasses! I had switched from plastic frames to metal. Back to the old ones. Boom. Problem solved.

Except here I am 8 weeks later with widespread joint pain. My left ankle is swollen. My shoulders are arthritic. And my knees wake me up at night with pain and stiffness. My glasses, on the other hand, seem to be fine.