My ALS Adventure – June 2019

June 6 – it’s the end of the four times a day Vancomycin regimen.  Now I need take it only twice a day to be sure c diff really has been eliminated. I don’t have to get up at 6 or stay up until 11 to take it 🙂

My legs, however, have continued rapid weakening. They look quite odd now there’s almost no muscle. Felicity got the wheelchair sorted out just in time. The ramp for the deck so I can get outside is due to come today. 

I’m trying but I haven’t made much progress yet on accessing joyfulness while exhausted. I enjoyed sitting outside a couple of days ago, the sky a vibrant deep blue, the lawn and trees so peaceful, so many birds twittering and the young peacock practicing raising his tail feathers for the mating display. He’s really very timid. He panics if his mom gets more than a few feet away. 

When my first Buddhist role model, Anam Thubten, was beset by intense pain and was offered morphine he declined. “I had done so much mindfulness practice for so many years, I was sure I could transcend the pain” he said. “But after half an hour I recognized there was no need to have that pain so I asked for the morphine”.

Exhaustion seems different from pain, though. There is no suitable drug. I can’t observe my exhaustion as the great masters observe and don’t suffer from bodily pain because I don’t have enough energy.  I can reflect on this circumstance, though, even if slowly, and figure out the best response. 

Part of it is going outside. I watched the peacocks again, the iridescent blue neck and spectacular tail feather fan of the adult male. He pecks up the dry cat food Felicity throws on the lawn for them then jumps up to perch on the deck rail behind me. He feels safer off the ground. The peahen and their boy amble to the cat food area but she soon moves on to the bowl of food meant for the barn cats. Junior follows, his neck also vibrantly blue. 

My guts have been a bit unhappy all day. Felicity will call the doctor in the morning. 

June 7 – I’m to go back on the four times a day regimen. I do nothing most of this morning lying in my recliner with eyes closed. Feeling marginally better around 1 it occurs to me that YouTube might have videos of cricket. They do!

June 8 – I’m very lucky that my hands still work so I can type on my phone to talk. It will be very difficult when I can’t even communicate that way.

I’m getting clearer on the challenge posed by exhaustion by differentiating my feelings from my emotions. Feelings are our moment to moment response to experience. Emotions are feelings that arise from a story in our mind that’s triggered by an experience.

We want our feelings to reflect exactly what we experience and emotions are a distraction. Swept up by emotion, we don’t even notice our experiences right now. 

So the problem with exhaustion is it both attenuates our feelings and it hampers our ability to detach from habitual emotions. 

Jun 13 – I’ve grown rapidly weaker in the last few months. Since the speedy decline coincided with c diff I first thought that may be the cause, then I thought it may be a secondary cause compounding the ALS weakening. Now I guess the feebleness is mostly an acceleration of ALS. The rate of decline does fluctuate. 

I always use the chairlift on the stairs now and I have to walk very slowly and carefully to keep my balance. Getting up from a chair takes a lot of effort. 

My nose has also been getting blocked again intermittently in the past few days. Sometimes I’m unable to use the BIPAP at night because I must sleep with my face on my fist to hold one nostril open. The blockage is most likely caused by allergies. We’re experimenting with a nasal spray. I don’t have the diaphragm strength to blow my nose. 

The hospice nurse says my lungs and heart sound good.

Jun 14 – On the way to the toilet before my 6 am vancomycin this morning I fell for the first time. I didn’t hurt myself but the noise scared Felicity awake and it was hard to get upright from the floor. 

Fortunately, the hospice nurse arranged a powered recliner for me because it’s growing harder to stand up from my wonderfully comfortable one. 

t saw my attachment to the woodstove. It had to be removed to make room for the chair. I got over that soon enough, though. The great challenge now is not so much from things I can’t enjoy any more. It’s more that there’s increasingly little I can do at all. 

Writers of travel logs are advised not to mention their bouts of sickness but this is the account of a journey into that very thing so I must record that I’m still having diarrhea intermittently. My latest bowel movement tested negative for c diff so my doctor asked that I start making a detailed record of the time and nature of my every bowel movement.

Jun 15 – Today is my first day off Vancomycin and despite having to get up every couple of hours overnight I feel pretty good. That’s positive 🙂

Jun 20 – The gastroenterologist confirms that my gut is recovering. She prescribed a powder to help it restabilize. 

If we were starting over, we would still go to John’s Hopkins for a diagnosis but we would then sign up with Hospice and the ALS Society, not rely on the hospital’s ALS Clinic.  

We may well be exceptionally lucky with our Hospice nurse but the systemic difference is that she sees me and other ALS patients frequently while the hospital staff see us only once every six months. 

Arranging my food formula is an example of what the hospital staff can do well because it does not require knowledge of my ever changing condition. They don’t have experience with the day to day challenges of an ALS patient, though, so even their recommendations about things like a neck brace are not dependable because they don’t get enough feedback. 

We would sign up with Hospice promptly not only because they have experience with the daily life of ALS patients but also because they coordinate with my family doctor and specialists she recommends, and they deal with Medicare. Nothing falls through the cracks. Also, they supply so many necessities ranging from a hospital bed to food formula, all at no charge. 

We would also contact the ALS Society because even though their closest office is quite far from us, they are of great practical help. They are loaning me a power wheelchair, for example. Felicity got the ramp installed today so I will soon be able to move round the yard. 

The wheelchair is coming at the right time. My legs are continuing to lose strength quite rapidly. Well, it’s more that there is very little strength left now so small reductions have a big effect. I have to walk very slowly and touch furniture or other stable things as I pass by to avoid  losing my balance. 

It’s clear to me now that I over estimated the side effects of the antibiotics. All my muscles shrank and weakened in the last six months while I also had the gut problem. The infection and the antibiotics just made me more tired. 

My recent high point was a four day visit by David, the brother my parents could not give me. We watched Anam Thubten’s teachings about the bardos, the Tibetan Buddhist term for in-between times. We had deep discussions about that and many other topics as well as much fun and humor. 

I am now in the bardo of dying. As the “Tibetan Book of Living and Dying” says:

“The bardo of dying falls between the moment we contract a terminal illness or condition that will end in death, and the ceasing of “inner respiration”. It is called “painful” because if we are not prepared for what will happen to us at death, it will be an experience of tremendous suffering.”

I’m blessed to have been in this bardo for three years so I’ve had plenty of time to prepare for the death of my body and to do what I can to help my loved ones. That means it is not painful. I am still preparing for what happens at the end of this bardo but I can approach it with equanimity. 

I am blessed to have met three teachers for whom I have felt devotion. Anam Thubten showed what is possible. Shugen Sensei, abbot of Zen Mountain Monastery, gave me confidence that I would find a teacher and pointed out that “if you really want to end suffering it’s very simple; stop creating it”. Phakchok Rinpoche showed me how to practice. His transformative kindness has been everything I needed, both fierce and gentle.

Jun 25 – A couple of weeks ago I asked my hospice nurse whether Felicity could be in legal trouble if I stop eating. She would not and when my lungs get too weak that’s what hospice will advise, anyway. 

I asked because I will fairly soon be unable to walk even to the toilet, my arms are much weaker than a couple of months ago and the muscles in my hands are no longer visible. Felicity already has to give me a shower. Helping me with the toilet will be a much greater burden.

The turning point, I think, will be when I can no longer use my hands. I won’t be able to feed myself or drive the wheelchair that will come tomorrow but most importantly I will no longer be able to type. I will have lost the ability to communicate at all. 

Sure I could get one of the devices you can type on by looking at the letters. But would it really be beneficial to anyone if that is all I could do?  

I won’t decide ahead of time or hurriedly about when to initiate my body’s death but I am most grateful to have the option. 

Jun 26 – The power wheelchair is here!  It’s brand new and excellent. I drove to the pond, into the field, then to where the rabbits hang out. It will take a little practice because nothing happens at first when I steer, then it starts to turn fast.

The only serious difficulty is neck pain because my head flogs around over uneven ground but my hospice nurse came today with the hospice doctor and a new nurse who has a lot of experience with ALS patients. She says I need a full neck brace of the type people use when they have neck injury. They will get one for me. 

That is an example of the great difference between these nurses who spend time with their patients every day and the staff at the hospital who see them only briefly at six month intervals. This nurse knew exactly why I don’t use the brace recommended by the hospital staff — my chin hurts when it supports the entire weight of my head. 

I hope what we keep learning that I post here will be of practical help to others. It all seems pretty obvious once we know each new thing but that’s true of most everything 🙂

Jun 27 – I was very tired yesterday and don’t know why but I have more energy this morning. We’ll try a different way of supporting my head and I’ll go for another spin round the yard.

7 comments on “My ALS Adventure – June 2019

  1. I do appreciate your writing this Martin even though it hurts to read it. You are right..outdoors is so much more enjoyable even when one is sick. I love sitting outside listening and watching the birds. Don’t either of you worry when you need help on the toilet..just another but of nature. I was able to help Jim when he was sick and didn’t want to have nurses help…no worse than helping babies and we do that with no embarrassment. Love you and my thoughts are with you.Love
    Ruth

  2. Martin, you teach me so much. I thank you with all my heart.
    Much love and many good wishes for enjoyable rambles around the yard in your new wheelchair!
    Muriel

  3. My thoughts with you Martin.
    I feel lucky to know you and to share life with you.
    What experiences and good times we’ve had. How far we’ve journeyed.
    Very best wishes (and love).
    Robin

  4. Hi Martin,

    Thank you for your writings and your FB posts. I am happy to have met you in Nepal and recieved teachings together. You are a rarely found genuine person and practitioner. Keeping you in my thoughts. Your perseverance is really an inspiration.

    Thank you

    Much love
    Paul

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