My ALS Adventure – March 2019

To my family – March 15

We decided that although I’m handling stairs okay now it’s better to get a stair lift before I need one. We’d begun the research a couple of weeks ago when I was tired and had to take the stairs slowly. 

About the tiredness — it seems to be correlated with an upset stomach. I eat the same thing every day but sometimes my gut has trouble digesting it.  Maybe batches of formula are different somehow. 

There are many manufacturers of stair lifts and even studying reviews and top ten lists doesn’t make the choice obvious so we had three vendors come to the house. The first seemed fine. The second cost twice as much and wasn’t obviously better. Its salesman spent much of his time bad mouthing the first manufacturer.  That led us back to the reviews and we realized the key thing is service. If the lift stops working and I can’t use the stairs without it, I don’t want to wait a week or more for a service guy to come. 

Felicity called an installer in Gettysburg who was by far the most  convincing of the three. He reluctantly confirmed that the first vendor is not good. His product costs in the middle of the others. So we’re getting that one installed on Monday. (Update: it works fine.)

I had the first of two physical therapy sessions  The therapist was cranky because the prescription just said I should be given therapy. Felicity explained my condition, its history and that I need a program I can do at home to keep my joints flexible.  He was fine now he knew what to do and when Felicity mentioned that I used to trek in Nepal his eyes lit up. He told us about his triathlon in Canada, how much he wants to go at least to Everest Base Camp and his enthusiasm for all Jon Krakauer’s books.

Meanwhile I’ve been gathering funds to support the education of half a dozen girls in Ladakh. It was the next place I wanted to explore, a Tibetan area that is relatively unchanged because it’s part of India not China.  I’ve been Facebook friends with Gary Sayers, the head of Our Ladakhi Sisters (OLS), for a couple of years.  It’s a registered charity that gives funds to schools to support individual students. 

A student who graduated from High School and needs extra studies before vet school can’t be supported by OLS because Indian law only allows it to donate to schools. This student must be supported directly.  Friends have offered enough to support other girls, too, so, like every project I ever did, it’s more complex than I expected and very satisfying.

My other big project is adding photos to my trek logs and posting them to my website. My camera on the early treks was film and I didn’t label the photos with where they were taken so it’s a good and happy exercise for my memory. 

Back to my physical health — my breath has grown worse and worse. I’ve started brushing inside my mouth with Listerine but my family doctor said I should go to the dentist. I was hoping to avoid that now I no longer put food or drink in my mouth 🙁 I wonder if I’ll be able to get my mouth open far enough. My jaw muscles have tightened up.

We decided to sell the RV because I won’t be strong enough for another trip.  It went back to the lot where we bought it yesterday.  I do feel a little regret about that but far stronger is my delight that we did the trip.  Henry was a good friend.

To my Tibetan doctor – March 15

I had more energy most days last month than in January.  I think the additional weakness in January was not just that I was recovering from the road trip and re-acclimating to being home.  Felicity had a bug early in the month that made her very tired.  I suspect I got it, too, and it took my weakened system a long time to overcome it.

Episodes of extra weakness last month seem to have been correlated with mild stomach upsets.  They certainly were once I noticed the possibility.  They may be triggered by differences between batches of my food formula.   I switched to a different box of them the last time I had digestive trouble and quickly recovered.

The last couple of days I have been very tired and I suspect that’s because I started sleeping on a different bed.  My breath had grown so bad that It was hard for Felicity to sleep with me.  I’ve started sponging inside my mouth with Listerine with some positive results and will get my teeth cleaned at the dentist.

I need to sleep for 10 to 12 hours and all my large muscles are weaker.  I can still walk and climb stairs but I get short of breath quickly and I have to pay attention to keep balanced.  The ALS clinic prescribed physical therapy to give me a program I can do at home to help avoid stiffness.  They are easy and it feels good to be doing something but they may also contribute to my extra tiredness.

The ALS clinic measured my lung capacity at 15% but that’s because my lips can’t make the tight seal the instrument requires.  My neurologist confirmed, by observing me, that my lung capacity must be higher than 15%. My oxygen saturation is usually in the high 80% to mid-90% range.

I’m able to use the BiPap at night again because Felicity got me springy clips that I stick on my nose to keep the nostrils open.

We’re getting a stair lift installed so it will be here when I need it.  I’m ok with all that but we’re also selling the RV because I won’t be strong enough for another trip and I do regret that a little bit.

So…  I recognize what you said about our lack of knowledge about neuroplasticity but I’ve come to the conclusion that I don’t want to get up early to take the precious pills and put their extra strain on my 75 year old body.

I’m happy almost always, I’ve accomplished most of what I hoped to do and there are things I can still work on that feel worthwhile.  My kids are all doing very well.  Getting Doma a job is the only big thing left and other people are working on that, too.  I joined the ALS Institute’s Precision Medical Program so my data will add to the big database they’re building and I feel I should continue to take Riluzole for continuity.  I got another botox shot to reduce dribbling.


From my Tibetan doctor

Regarding the precious pills, I will leave it up to you. We can certainly modify the regimen to a time that is convenient for you. The early mornings were simply to maximize its optimal time, but I have patients taking precious pills at various times of day depending on their capacity and condition. One of my lung cancer patients was taking precious pills daily through his last days, and his aerospace engineer wife was tracking his oxygen saturation rate — it increased 10% on precious pill days compared to non-pill days. He was also quite coherent till the end (which is rare for lung cancer patients, and he was not a practitioner). So I think it would be ideal if you could continue taking them as your energy, schedule and capacity allows. However, I will certainly respect any decision you make. If you are ready to move on from medicine, and simply maintain the Riluzole for the consistency with the ALS Institute’s Precision Medical Program, then I am happy to support you in doing so.

To my Tibetan Buddhist teacher’s assistant – March 21

I’m happy and odds are that although it continues to weaken, my body will keep functioning for another year or so, which means we probably have enough time to plan.

After discussions with my wife and kids we’ve agreed that if possible I will die at home with whatever help is necessary from a hospice organization.  I will in any case have a green burial so my body will be a source of nourishment.

What I realized from our discussions is that I hadn’t sufficiently considered my family’s feelings.  They are supportive of my Buddhist practice but they know almost nothing about what is involved.  They know it has positive results for me but to the extent they know anything about the rituals, they seem weird.

I realized it would be very distressing for my wife especially if I give my skullcap and thighbones to Rinpoche as I intended.  Just the thought of it is upsetting enough and it’s certainly not something I can put her through if I die in my home and my body goes straight from here to the cemetery.  It was already problematic, anyway, because I haven’t found anyone who knows what to do.

What took me longer to accept is that I would also be selfish to accept Rinpoche’s very kind offer to send a lama here to perform the ritual practices as I am dying and after.  My wife would feel that caring for me at that time had been taken away from her by someone with whom she had no previous relationship and who was distracting her from her own way of saying farewell.

I discussed all this with Doma who would have helped the lama in any way possible.  We wonder if there is anything that can be done remotely instead.  Is there something she could do, with or without a lama, if she/they are not here with me?  Perhaps there are practices for those who die in very remote places up in the mountains?

Please discuss this with Rinpoche.  It is most likely not urgent for me, as I said, but it is important, and my dilemma will be faced by other Westerners with families, too, so it’s worth figuring out.

End of month status

For the last couple of weeks my body has been struggling with a viral infection. Felicity had the same symptoms, severe tiredness, runny nose and mild stomach problems starting a bit before mine and before a lovely long weekend where our three sons and four grandchildren came to celebrate the anniversary of when my body separated from my mother’s. I say it that way because my birthday on Facebook is when my body separated from England.

At first I wondered if my mild extra tiredness was ALS-related. Then I wondered if it was my extra activity at the weekend. Then I went to bed for a nap early in the afternoon late last week and did not wake until 10 the next morning. Felicity was afraid I was not going to wake at all. I’ve been slowly regaining energy since then. I stopped eating the formula because my gut was quite disturbed. Yesterday and this morning I had a little white rice blended thoroughly in water with some Gatorade powder.

I felt very tired at first yesterday but by midday i felt pretty good and this morning I feel quite a bit better. I’m on the way back to whatever is my current underlying bodily health.

There were times when I felt like an old dog who it would be a kindness to put down but even then I did not feel regret. Thanks to the example and practical guidance of my amazing spiritual teachers I’ve learned how to be happy to be alive almost no matter what, and because I have this precious human life I can keep practicing. I’m also spectacularly blessed by Felicity, my children, and so many friends and other loved ones.

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