My ALS Adventure – Jul 2019

July 1 – given how long it takes me to walk to the bathroom these days it’s a good thing I know how it feels being on a long trek. 

I tried breathing steam with eucalyptus oil to clear my nostrils. It doesn’t seem to make any difference. Last night I had to take the BIPAP off because I could breathe only through my mouth.

Since we hope I can die at home, dry ice will be necessary to keep my body cool before burial. Felicity finally found a source. Someone delivers it to this area twice a week because many Mennonites live here. 

President Eisenhower was raised as a Mennonite and he retired here. They are pacifist but he joined the army to support himself. My dad was appalled when he was elected but I’ve had a growing sense for many years that Ike was a good man. 

Jul 2 – For the first time in months I slept uninterrupted for five hours. My gut really is working almost normally again. 

Jul 4 – I sat on the deck on my wheelchair this morning. The angle of the seat, the back and the leg support are independently adjustable so I could get comfortable and make adjustments periodically. It’s a fine machine. 
The adult male peacock hung out on the railing close by, preening and looking about. His wife and son ambled round the lawn hunting insects.

Jul 5 – we’re aware of the importance of our leg and arm muscles but I never thought about my speech depending on them. I also hadn’t thought until recently about my need for muscles to move my bowels or get out of bed. This is quite an education. 

Jul 6 – I realized in the end that if I could brace my neck vertical, it could support the weight of my head like before. I researched the possibilities on Amazon and got one with a rigid plastic frame that is supported on my chest, shoulders and back. It works!

Jul 7 – my neck was tipped forward a little – maybe I should try the same neck brace for a longer neck – but I went all through the rabbit and deer area, down the side of the field then watched a muskrat scurry along the pondside and swim to the young willow whose trailing fronds hide its burrow. My head jiggled over the bumps but it felt safe 🙂

Jul 8 – I keep repeating the verse and reflecting on my aspiration to attain enlightenment and reach the state of Buddhahood to benefit others. I used to try to imagine enlightenment but now the word seems misleading. Buddhahood is more clear. 

Sixty years ago when I read “Three Faces of Eve” I realized I have no fixed self but, utterly self-centered as I nonetheless remained, it did not occur to me that the same is true for all of us. It took so long to see the need to shed my mental habits so my actions could more consistently arise from the basic nature of all beings, kindness. 

I was 35 when, as I retrieved a Frisbee from inside a yew bush, I saw red berries. I was astonished to learn that Felicity always knew they were there. Turned out my eyes have very low sensitivity at the red end of the spectrum and very high around yellow so I don’t see red against a green background. 
What if I was sensitive only to infra red? I’d see the bush as if through night vision goggles. Or what if I was in a house fly’s body?  Or a brontosaurus? The yew bush appears differently to every perceiver and it is also changing all the time, growing and with bits falling off, but in each moment, along with the myriad ways it appears to observers, it is exactly what it is. 

Jul 12 – I ride all round the yard with long pauses to enjoy each view. Although the adult peacock has lost most of his tail feathers in the last few days, he still stands in the driveway preventing vehicles from invading by fanning the few feathers he has left. 

Jul 14 – I can see more about how my body works now my muscles are so weak. The formula does not drain from the syringe into my stomach, for example, I have to expand and contract belly muscles. Breakfast took a long time this morning because those muscles are now so weak. 

Felicity asked if there are any foods I crave. Nothing as strong as that but happy memories of pork rinds do come to mind pretty often. 

Jul 15 –  I need a lot of help to shower now and it’s hard on both of us so we asked a hospice person to demonstrate how to wash me in bed. It went well and she said she’d be happy to come back regularly, so we accepted with gratitude. 

Jul 16 – levering myself up from my armchair just now brought a big smile to my face as Dr. Strangelove’s “Mein Fuhrer, I can walk!!” came to mind.

Jul 19 – I didn’t want to get up this morning and it was the same yesterday but I feel less tired today which makes everything better. 

Anam Thubten used to say we’ve woken up in a five star hotel In beautiful grounds. The sun is shining, leaves are fluttering gently in the breeze but our roommate, Mr Ego, keeps talking. This morning he was worrying if I would really enjoy being awake now my muscles are so weak.  He was distracting me from right now with his worries about the future. 

What I suspect set him off is the muscles in my hands have shrunk markedly. They don’t feel different but I’m not using them for anything that requires strength. Life will be much less enjoyable when I can no longer type. I’ll have lost the ability to communicate. 

Jul 20 – no mental problem getting up today, just physical difficulty. My weak abs make it impossible to sit up and my arms are not strong enough to push myself up. I struggle round so I’m across the bed with both legs mostly off the edge then swing my left leg down hard to lift my trunk up and my right arm behind me to stop myself falling back. It takes a few swings to get solidly upright with both feet on the floor. Adaptability!

I cruise round the yard for an hour this morning. It’s already in the high 80s. Swallows are speeding low over the pond scooping up insects and maybe tiny fishes.  A deer only ten paces away bounds up in the tall weeds in the field. This wheelchair is very quiet. 

This afternoon I couldn’t grip the jack tightly enough with my right hand to pull it out of my phone. I managed with my left. If you’re right handed ALS will weaken that side of your body first. 

Jul 21 – when my fingers give out I will also be unable to read the news. I’ll have less to think about and I’ll feel disconnected from the world. I’m not sure how I will be able to read books either. But I can sit outside and watch movies inside and I can do spiritual practice. 

Jul 22 – an owl was hooting from the trees to the south when I woke deep in the night. 

I must go ever more slowly to keep my balance. Several times a day my legs start jigging up and down an inch or two, sometimes just the right leg, sometimes both. My limbs all work still but very weakly. If I had to guess I’d say I’m unlikely to be around next year. 

Four friends so far have asked if I would be willing to talk with their friends with ALS. My key suggestion for patients is to focus on what you can still do. It’s OK to notice things you can’t, just don’t dwell on them.

For care givers my emphatic advice is to get the patient to sign on with Hospice.  No need for or benefit from waiting. The practical and emotional support from a nurse who visits every week, gets to know you both and knows how it is for others in your situation is life changing. 

Jul 23 – my physical energy is the same or a little less from one day to the next but my mental energy fluctuates up as well as down. It’s good today and I always feel weaker after a nap so I’ll skip it today.  I’ll also have some coffee in my breakfast. 

This has been a very good day. I reviewed and posted about the news, worked more on updating my investment advice, read more of a novel, continued a dialog about how fundamental reality may work and how the relative form we humans perceive is also real, responded to other emails and watched a movie. 

Jul 25 – I had good mental energy again yesterday, did not nap, and I spent the day much like the one before. But I had a coughing fit in the afternoon. I get them occasionally. I imagine they’re triggered by a buildup of saliva rushing down my throat. 

This fit was much worse than previous ones. I couldn’t stop it. Liquid swilled down my nose so I couldn’t breathe. I couldn’t get my mouth open either. Mounting pressure in my abdomen forced a bowel movement. A little air began to creep in when I dragged my nostrils very hard to the sides so I didn’t pass out but many minutes passed before I could get up. 

At bedtime my legs were extremely weak but I was able to get up and go to the toilet during the night with no more difficulty than on previous bad days. It’s midday now and I feel pretty good. 

Could coffee at breakfast the last three mornings be causing diarrhea? I won’t have any tomorrow. Again no nap today but I didn’t feel up to going outside. Hospice got me a commode to make nights easier. 

Jul 27 – my guts have been behaving well but I’ve had less energy. I needed a nap yesterday and I didn’t have the energy to continue aligning the Tibetan Buddhist wheel of life with quantum physics. No nap today. Quite a productive day. 

Jul 28 – When I woke last night my nose was blocked. It doesn’t happen when I sit in my armchair so I raised the head end of the bed more. Saliva drains better and I don’t cough if I lie on my right side so it was a bit uncomfortable having my trunk raised while my legs were horizontal but my nose freed up. Buddha is pictured lying on his right side when his body died so it’s also quite propitious. 

It’s a beautiful day and I feel good this morning so I’ll see if I can drive the mower. 

I can!  I needed help to get on and off but I mowed the whole area round the pond, the strip alongside the field, then a path back through the rabbit yard. It took an hour and a half and it was easy. The mower is spectacular. The grass was anywhere up to 18 inches tall and succulent. Now I can drive round the whole yard again in the wheelchair. 
I needed a nap and I’m tired this evening but that was so worth doing. 

Jul 29 – I drove all round the yard enjoying it’s peaceful beauty. The thinning and transplanting I did over the last few years was good but more needs doing now. I’m so lucky to have done all that acceptance and impermanence practice. A disease like mine must be so hard for anyone who hasn’t. I get frustrated sometimes but I am happy mostly. 

Jul 31 – today, however, had a difficult start. I hurt my belly while flailing my legs to lever myself out of bed. Having to get up  to pee every couple of hours means I must do a lot of that. Fortunately our wonderful hospice nurse came today. She suggests I try an external catheter so I won’t have to get up at night. That will make a big difference if it works for me. 

My heart rate is around 80 after lying in a recliner for a couple of hours. It used to be in the high 50s. Less oxygen gets into my blood – 91% just now – so my heart has to work harder. My blood pressure is good at 128 over 64. I was never interested in such things and haven’t much interest in them now either haha. What really is interesting is how much better I’m feeling three hours after getting up 

To close the month i just have to brag a little Do you remember the summer kitchen I started to repair? The foundation under the north wall had rotted and the weight then being supported only by the roof beam broke it, so the roof hung down eighteen inches in the center.

i cut down the tree, installed a new foundation, jacked the roof beam back up — a little bit day by day — repaired it and a broken joist, replaced the rotted out bottom four feet of wall, hung a window and rehung the door. I A also made a lean-to firewood storage area. My muscles gave out before i could repair the floor but i’m happy with what I was able to do.

One comment on “My ALS Adventure – Jul 2019

  1. Martin, it is lovely to share your rambles about the yard and observations of wildlife and natural beauty. I did laugh about the pork rinds! To me, yuck!
    The project with the summer kitchen is so impressive. Of course you should brag — a lot! Thank you again for these posts, Muriel

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