My ALS Adventure Aug 2019

Aug 3 – yes, it would just fit. It was only when I was picturing how to maneuver it into place that I recognized the problem. I wouldn’t be able to move it because my muscles are too weak.  This is the first time ALS has entered my dreams.

Since listening to the bardo talks I’ve been trying to be aware when I’m dreaming. It’s hard enough to get outside my head when I’m awake and I’m skeptical about encountering visions after my body dies but the more aware I can be the better. 

I slept well after a very stressful day yesterday. We had run out of my food formula so I went back to Ensure to tide me over. My gut has lost the ability to digest it though so I got little nutrition on its way through. 

Aug 6 – I didn’t want to get up, not because I felt bad but because I was enjoying lying there, watching thoughts arise. Our universe appeared as a soap bubble that was expanding, not because someone was blowing into it but driven by heat from a stupendous explosion  Then I was inside the bubble where the skin was no longer visible. 

Back outside looking at it was when I realized there never had been a skin. I’d seen it because of my human concept that everything has a skin. There was in fact no difference between what was inside and outside what I thought of as the universe. 

Yesterday, Felicity got me an Apple watch. She was worried that I might fall while she is out if I don’t have my phone with me. It’s an iPhone Plus, quite large, so I usually leave it beside the chair when I go to the toilet. I can text her from the watch and it has many other apps that I haven’t yet explored because I was tired after a lovely weekend visit by Mark and Julie. 
I asked Mark to explore in the attic where I can no longer go and try to find the second and third autobiographies my dad wrote. I posted on my website the one he wrote when he was 50 and was recovering from jaundice but I’d never read these.   

Dad wrote the second one when he was a bit over 70 and was with us after my step mother died and the third one after she died and he married my mom’s youngest sister. He was almost 80 then and happy.  It tells what he did in England after High School in Ohio. I only knew fragments from that time and the 1930s and ’40s are very interesting. 

Aug 7 – again I was reluctant to get up because I was enjoying lying in bed. It’s lucky that I enjoy using my mind since my body is increasingly useless. I spent most of this morning thinking through investment suggestions for now and after I’m gone. 

Aug 8 – last night I tried out the external catheter. I enjoyed not getting up for the toilet but the catheter soon came off — they’re designed for guys who’ve been circumcised. I didn’t know I was peeing in my absorbent pants. It wasn’t a problem, though, so I’ll try using a diaper tonight. 

What was a problem was the protective pad where I lie. It has a high friction surface so it was very hard to make even slight movements for comfort. I woke often and stayed awake in discomfort for what felt like hours. Felicity will put it under the sheet tonight. 

Aug 9 – I’ve been in a rapid weakening phase recently. For me it’s a new challenge, unwelcome but something to which I must figure out a practical response. For Felicity it’s a trigger for turmoil because there’s usually nothing she can do to help. It’s easier for me. 

I slept normally so I don’t feel unusually tired this morning. It was hard but possible to pee in bed when I thought I was using the catheter but it’s worrying with a diaper. Childhood conditioning is very strong. I went back to the commode. I’ve improved my leg flailing technique to sit upright 🙂
This afternoon the fish were feeding very actively on insects on the pond surface. They’re coi. I’ve only seen them once because the water is always muddy. Winter was ending and the ice covering the pond had just melted. Twenty or more golden fish, many over a foot long, were frolicking in the shallows where the water had warmed. 

Aug 10 – an unfortunate start to the day. I made myself stay in bed with a diaper all night but got up to use the commode before dressing. I sneezed violently on the way back to my clothes, over balanced and fell. I was unhurt but it was noisy. Felicity helped me get upright again which wasn’t easy for either of us. 

Aug 12 – ok, I did bruise my right shoulder, elbow and hip but I didn’t break anything. I wonder if I could have gotten upright after resting long enough. I’ll try even harder not to repeat the experience. It left me tired the last couple of days but I think I’m back to my latest normal today. 

A funny experience this morning. I wish I knew how so I could repeat it but I went until 5:30 without needing to pee. I decided to go for the commode but when I began struggling off the bed my flailing leg collided with a bunch of pipes. It took a little while to realize Felicity left a walker there for me. 

By the end of the day I know what it means to be on your last legs. 
Aug 13 – Bonnie came to give me a bed bath. Now she and Felicity are talking and laughing in the next room. I’m experiencing so much kindness. It comes naturally to all these people who know my circumstance. They want to alleviate suffering. 

It suddenly strikes me how different the world would be if we recognized that everyone is suffering. It’s not the only thing we do but we do all suffer. If we felt that truth, how kind we would all be. 

It’s always said that you can’t take it with you. There’s more to it than that. When we’re gone, things we cherished may not be wanted by anyone. I just wrote the story behind my mom’s typewriter. She died over half a century ago so Felicity is the only other one who even met her. It’s not just that we can’t take our possessions with us; we can’t leave our instructive memories behind. 

Aug 14 – walking is only possible now with a walker and it’s a very slow shuffle. My legs support me only if my thighs are directly over my calves because the muscles are so feeble. In bed I don’t have the strength to lift any of my body. All I can do is drag myself to where my legs are almost off the side, claw myself onto my side and flail my leg, trying not to run out of breath until momentum lifts my trunk. 

I do experience frustration sometimes but not self-pity or fear of what’s to come. Pretty lucky, eh?  It’s temperament inherited mostly from my mom amplified powerfully by Buddhist practice.

Nonetheless, it’s disconcerting that walking, which I used to do without thinking, is now difficult and dangerous. 

Aug 15 – this was by far my most difficult morning so far. I was exceptionally weak and walking was almost impossible. The nurse came on her weekly visit and found my blood oxygen level to be 88% and my heart rate a bit high at 142. After sitting all day and a long nap I feel less tired this evening but I asked mom to feed me. That was so much easier. 

To end this update on a high note, though, I just got a card with lovely greetings from my fellow students in Cooperstown NY. 

Aug 17 – yesterday and today are my most challenging so far. I got up yesterday with much difficulty and help from Felicity, considered if I really was ready to get dressed and decided to lie down again. I’ve been in bed ever since.

I don’t have the energy for anything other than lying down and I can barely move as I lie here. It’s as if I’m paralyzed. Being able to walk only with a walker and very slowly was much easier to accept. This is a whole new level of challenge.

Aug 18 – I’ve never been able to hover so I don’t expect to get closer to the head of the bed by flying. I do expect to get there using leg and arm muscles but they are no longer strong enough to move me. To my surprise I don’t know how I would have done it anyway. I never thought about how to do such things. I just did them.

I do sometimes feel a flash of annoyance when I can’t do something. I try to just experience the feeling, not dwell on it or let it trigger thoughts. What’s harder is when I can’t communicate what I do or don’t want to Felicity or she takes longer to do something than I expected. Then I feel bad because I felt annoyed at her. The root of all these problems is having expectations.

Aug 19 – that was scary! I’d been watching a movie for an hour or so, on my back with trunk and head raised a bit. Suddenly, something happened in my throat and I couldn’t breathe. I clawed myself onto my side, wrenched on my nostrils and tried to inhale. After half a dozen or more tries I got a little air in. It felt like I was a goner.

I lay awake more than four hours after that keeping a trickle of air coming in. It stopped again once. After the four hours I nodded off, woke for a while and so on for another seven hours. My body feels like it has a pretty weak hold on life.

Aug 20 – slept soundly most of the night and feeling better. Now trying to breathe deeper to get my blood oxygen level up.

Aug 23 – I dozed briefly a couple of times the night before last but I was awake every hour from 10 to 9. I couldn’t text Felicity because my glasses fell on the floor so I couldn’t see. She wears the Iwatch now because it was too small for me to see at night.

The exhausted feeling as I keep lying here is a bit unusual because it doesn’t result from using the muscles. It feels subtly different.

Bonnie came to give me a bed bath but I was too tired. She asked Jen the nurse to check on me. My blood oxygen is 86 today. I will almost certainly be unable to breathe within a month.

Aug 24 – my last meal was late yesterday, it was followed by a throat spasm and blocked nose, then five hours trying to get a dependable air flow. After a shorter sleep, my nose is clearish then I feel slightly nauseous all morning. We decide to cut my daily feeding from 2,000 to 1,500 calories. Nurse Jen later says we can drop it to 1,000.

Aug 26 – there’ll be nothing to learn from further daily accounts of those kinds of symptoms so I’ll end that now. Nurse Jen suggests a different approach to my nose blockages tonight. I’ll stop the dribble controlling medicine because it dries my nose as well as my mouth. I’ll cut the Sudafed that helped my nose a bit but also made it hard to sleep. And I added the morphine and anxiety meds all ALS patients get near the end. A little morphine slows my breathing cycle a bit which makes it more effective. The other one counters the body’s anxiety when breathing grows hard.

Aug 27 – I slept well for 5 hours, a breakthrough and my nose has stated clear all day!

My body has lost the ability to regulate my temperature. I keep sweating and throwing the bed clothes back then covering myself for some comforting warmth.

Aug 28 – a miracle! I slept 7 hours straight last night!

I learned something everyone close to death should do. To make it easy for Felicity to let my friends know I’ve gone I sent a short email to her and all my friends that she can Reply All to when the time comes. I asked them to Reply All to her with reminiscences she would enjoy.

What followed is a flood of loving emails that are delighting both Felicity and me and which I never expected to see. It brought to mind one of Bryan Bowers’ songs – https://youtu.be/TChEH-wCAlo

Aug 31 – wow! my teacher, Phakchok Rinpoche is sending his cousin — Tsangsar Tulku Rinpoche — to visit me for one or two days. Rinpoche will likely do prayers and puja and perhaps also give some teachings. I’ve been told that Phakchok Rinpoche considers me a good student but this is amazing. I feel so deeply honored and blessed. He will be here tomorrow and the next day.

2 comments on “My ALS Adventure Aug 2019

  1. Hi Martin,

    I’m grateful for your journal. I accompanied my wife on a similar journey eighteen years ago and I know all too well – as a close bystander – what is happening (at least from the surface). Like you, she was very clear and brave and made life easier for those around her, despite her difficulties. I can see that you are doing the same. And I think you are doing a real service to everyone by chronicling your day-to-day experiences. I didn’t quite hear anything like that from my wife. You are showing everyone the way to meet whatever comes and I sense your delight in your everyday existence, despite the difficulties. As a fellow Buddhist, I take heart from your journey. The Buddha said that we die and are reborn each moment. This is hard to see if you’re just taking a walk in the park, but more clear when you are confronting what you are confronting. As Marcus Aurelius said, Good fortune is the ability to bear misfortune. This is something that you’ve wrought yourself and it is truly an inspiration. I know that your practice and the love of those around you will help, support, and guide you wherever you go.

  2. Your posts are so important. Thank you for teaching us and sharing your journey. I realize I am not on your email list. Please add. Sue from DunsGate

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