My ALS Adventure – February 2019

I’m no stronger than last month but I haven’t been feeling so tired. Perhaps my body was fighting off the bug longer than I realized. Feeling more active means I have been a bit more active and that’s strengthening. This really is an adventure, haha.

Feb 6 – To My Family

I’d been chatting to someone for a while the other night before I remembered I hadn’t been able to do that for many, many months. I felt so silly for having forgotten how to talk. But I enjoyed chatting and I didn’t feel disappointed when I woke up 🙂

On Monday we went to John’s Hopkins for a six month checkup at the ALS Clinic. They are expert and caring people but we don’t learn much unless we ask questions so we’d prepared a bunch of them. 

My feeding tube is in good condition and that’s fortunate because my lung capacity is now only 15% (I don’t know what that’s a percentage of and I think it’s really higher than 15%) so I could no longer tolerate the general anesthetic that would be necessary to replace it

My leg and arm strength was deemed good and I was prescribed a couple of sessions with a physical therapist to give me a program to do at home to slow further decline.  I will not be trying to regain strength because that’s not possible and I must stop when I feel tired, not keep pushing as I always used to do. 

I must stretch all my muscles daily so they don’t stiffen. I only realized today that because I no longer move my jaw to eat or speak, those muscles have seized up. I can barely open my mouth most of the time and when I yawn I have to protect my lips when my jaw snaps shut. I’ll start a stretching program to loosen it. That’s necessary because my breath is bad. I thought it was OK to stop cleaning my teeth since I no longer put anything in my mouth. I was wrong. I need to swab it out several times a day. 

I’ve been pleased that I haven’t had coughing spells recently so I stopped using the Bullfrog machine. The reason I’m not coughing could, however, be that I’ve lost the coughing reflex  I must use the machine twice daily to clear mucus from my throat so it doesn’t get into my lungs. 

It will be good when I get another botox shot later this month because that reduces drooling without the side effects I’m getting from doubling my dose of meds recently. What I didn’t know is those meds dry up not just my saliva glands but also my eyes, and they impede urination. I’d noticed both symptoms but I hadn’t thought about their cause. My eyes are so dry now that when I was asked to close my eyes to test my balance, I couldn’t make them close. I hadn’t noticed that before. 

We asked about wheelchairs and were recommended to try a rollator. It’s a walker with four wheels and a seat. I could push it round the yard and sit down whenever I wanted or needed to. I can walk with a hiking pole now but probably not for a whole lot longer. Choosing a powered wheelchair is mostly personal preference. I’ll want one I can use to go round the yard. 

I’ve always been prone to my nose getting blocked and that’s worse now I don’t have the lung capacity to blow my nose. I sleep on my right side with my head on my hand to hold that nostril open. There are special cushions to make lying in bed more comfortable. (After we were home Felicity got me sticky spring strips that pull your nostrils open. They work like a champ. She had suggested them before but I was foolishly skeptical.)

We got the application form for a handicap sign for the car and advanced directives so emergency health workers will not attempt heroic measures on my body. One of those is now on the fridge door, the other in my wallet. 

It probably seems odd that I hadn’t noticed or hadn’t thought about some of these symptoms. I think it’s because there are changes going on throughout my body all the time. Keeping track of, researching and thinking about them all would take a lot of time I’d prefer to use in other ways.

On Tuesday I went for an eye exam. I had dropped my dribbling meds back to the original dosage but my right eye especially was still very dry. All the news is good. My eyes are unchanged from a couple of years ago. The doctor suggested I just get reading glasses because my existing ones are okay for everything else. They do now they’ve been adjusted, that is. 

So we chose a frame and reading will be easier a week or so from now. The problem I was having is now obvious. Why didn’t I think of it before? Because my neck muscles are weak, my head drops toward my chest which means I’m trying to read through the wrong part of the lens.  (Felicity found an aid for my weak neck, too, a foam brace that holds my head up and also allows some sideways movement for when I drive.)

I’ve noticed this before; things that are a mystery to me are obvious to an expert 🙂

Feb 24 – To My Family

When our situation changes enough it can be hard to see how our mind is responding. When asked if I get depressed because I’ve lost so much  strength I say I don’t think so. I accept my worsening situation with equanimity and I still find humor in things readily enough, but could I be more active?

That doesn’t seem very practical when just to walk I must go very slowly so I don’t run out of breath. But much as I enjoy reading and opera performances, they alone are unsatisfying. I realized I do need to spend some time accomplishing something.  So I’ve started adding photos to my trek logs and posting them to my website. It’s familiar work that requires considerable effort, but the effort is chiefly mental. So far, my fingers haven’t been affected and my eyesight should remain okay. 

One thing i don’t have strength for now is chainsawing so when Mark came, I gave him mine and its accessories along with my insulated coveralls and snow boots.  i’m not aware of feeling regretful that I can’t cut wood any more but the question keeps popping up in my mind, “are you sure you won’t need those things again”.  There’s no feeling of worry, it’s just a background process reviewing my actions and trying to help

One of the ongoing challenges is balancing my desire to do what I can still do with Felicity’s desire to help. There was no need to think about it before ALS but now I need help just to take a shower.  How, though, to recognize when it has become smarter to ask for help? And how can Felicity recognize the next task that would be better done with her help?  We don’t want to burden each other with unnecessary requests or offers. 

I commented the other day that I was very tired and my energy fluctuates quite a bit from day to day for no reason that I can see. The reply: “That’s true for us all”.  It was only a couple of days later when I had much more energy that I realized I’ve become like my first car. It had an 850 cc side valve engine and it was old. I’d have to change down to 3rd on slight inclines and 2nd on steeper ones. It had very little power so it was extremely sensitive to even small changes in load. 

The rollator came today. It’s a walker on four wheels with a seat so I can go for walks and sit down whenever I need a rest. We got the one with the biggest wheels so I can walk round the yard.  The wheels are quite small even so, 8″ in front and 6″ in back, so it’s hard to push over even slightly uneven ground. Felicity thought of dragging it on two wheels and that works quite well. It will be easy on paced surfaces. But this reinforces that it won’t be easy to choose a powered wheelchair I can use outside.

Today, Feb 17, is my most productive in a long time. I copy edited my first Himalayan trek log and posted it with an introduction and a way of commenting, went for a short walk, did an hour in my practice room, updated my tasks in Doma’s job search spreadsheet, lit the wood stove and used the remaining time to read. 

Low energy the next two days.  I reread Marjorie Allingham mysteries after a gap of forty years. They’re as good as ever, cleverly constructed tales of interesting people in a culture that was still shaping behavior when I was a child. 

Yesterday (Feb 22) we went to John’s Hopkins so I could get a botox shot to reduce my dribbling, and see my neurologist.  It was a different botox doctor this time. The shot I had six months ago was effective for about three months but we couldn’t recall how effective. Since I had no adverse results and that dose was very low, he gave me a higher dose. 

It’s always a delight being with my neurologist. He’s Indian and worked in the UK before moving here He was distant the first time we met but since the second time he has enjoyed and reciprocated my Namascar greeting with hands in the prayer gesture. He’s intrigued by my trekking in Nepal and my Tibetan Buddhism, he enjoys Felicity’s thoughtful questions and he likes our happy acceptance of what he so regrets is untreatable. 

When he tested my muscle strength and found my right arm and leg weaker than my left he said: “you’re right handed”.  Having observed me rising to greet him then sitting comfortably while he questioned us, he said: “the clinic measured your lung capacity as 15%. It can’t be as low as that”, which is what we thought from the outset. 

So, I’m weaker than when we saw him six months ago but we knew that. There’s no way to predict the future rate of decline so we didn’t ask. The good news is the dryness in my eyes results from the anti-drooling meds so that should clear up now I have the botox and have stopped the meds. 

There was a tremendous rate of flow the day after I stopped the saliva meds. That was yesterday. This morning the flow is less. The botox is starting to kick in 🙂

Feb 28 – To My Family

Condolences from a dear friend about my declining strength brought something into clear focus this morning.  I knew it before and I was pretty much living that way but it wasn’t crystal clear in my mind. 

To be happy we must differentiate between our circumstances and how we respond to them. 

The acceptance Buddhist and other teachers speak of means clear eyed acceptance that our circumstances are as they are in this moment. 

We cannot be happy and act in the best way if we are preoccupied with wishing our circumstances were different. 

If we recognize our circumstances wholly accurately, however, we can act to change them if that’s possible and if it isn’t, we can act in harmony with them.

Almost all my life I could talk and enjoy food and tasty drinks. I can never do either again but I can still communicate and get enough nourishment via my feeding tube. I can even get some fragrance by adding spices to my soy-casein formula. 

Almost all my life I’ve been strong enough to do what I wanted to do. I’ve lost most of that strength now and I’m losing the rest but there are still things I can do and there will continue to be until the end. 

What’s important is I can adapt. It would so sad to waste any of my life regretting what I can’t do instead of doing what I can, which might just be watching a dozen deer in the field opposite as I did yesterday evening.

All this is very obvious but I’ve been surprised by suddenly recognizing obvious truths before so I thought I’d mention this, anyway.  I hope the way I’ve explained it makes sense.

One comment on “My ALS Adventure – February 2019

  1. Dear Martin,

    Thank you for these inspiring words. I’m very pleased to be able to read them and to have you as a meaningful part of my life’s journey.

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