Thank you all for accompanying Martin on the journey so far. For those of you who find this blog later, welcome.
Martin died late Saturday evening, September 7th. The change was peaceful, and he was surrounded by family and words of love.
Shortly before that, when his body had become very much weaker, he wrote the below final entry for this blog and asked me to post it later along with whatever else seemed fitting.
“I’ve done everything I can think of that I can still do, there’s little I can learn by continuing to live like this and I will become an ever increasing physical burden to Felicity my beloved partner so I will eat and drink no more. I have been blessed in so many ways. Now I’m excited to see what comes next.”
These words encapsulate the spirit with which Martin approached life, and his death. He applied his Buddhist practice devotedly to the experience of ALS, and focused his attention on finding peace and equanimity with the various changes to his body. The grace with which he encountered every challenge showed us what was possible, and helped us to find a measure of the same ease with a very difficult experience. I’m deeply grateful for that gift.
Many years ago, Dad mentioned that it had recently occurred to him that the happiest time in his life had been when he was little, when his family had lived in a house with a dirt floor and had owned almost nothing. He said with a chuckle that it was ironic that he’d spent most of his life working very hard to make sure that he’d never be in that situation again. He said this not regretfully, but with his characteristic quiet amusement.
When Dad found Buddhism he approached the practice with the same diligence, deep curiosity, and quiet persistence with which he approached every new project. He explored, and practiced, and he found something precious – in a sense, he found a way back to that house with the dirt floor, to the knowledge that in the midst of life’s brilliant complexity there is a simplicity hiding in the center of everything. He discovered that by travelling there, a kindness and peace can be found which is the inheritance of all sentient beings.
Like all good adventurers, Dad returned from this experience changed and with a desire to share what he’d found. Not only did he write about his experiences here and elsewhere, but over the years he truly lived the precepts he was learning, devotedly applied the practice to his thoughts and actions, and by living that example he held the door open and gestured in, inviting us all into that tiny house with the dirt floor.
Dad’s body has died, and as he wrote in his final message he has now learned what happens at that moment. Over the course of his journey he helped so many people, touched so many lives – and through this blog and all the out-spreading actions of all those whose lives he touched he will continue to impact many more.
I think that the greatest parting gift he gave to us though is in his time spent pointing along the path that others had walked before him, toward the space we now share, all of us. He stands at the door to that tiny house with a dirt floor, smiling, his eyes alight, inviting us in. That house stands waiting for us, where we are together with the precious simplicity that Martin found.
As I sat with him in the last weeks we shared, one thing he mentioned was his hope that this blog would continue to be helpful to people. I encourage you to invite others into Martin’s childhood home, and to share what Martin discovered here wherever you believe it can be of help to others.
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. https://youtu.be/A9ihKq34Ozc
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.
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.
May 10 – The antibiotics and probiotics I’ve been taking for the last couple of weeks to get rid of c. diff. kept my guts in turmoil. I’ve also been much more tired. I’ll know in a few days if that was coincidence and if the bug is gone at last.
Meanwhile, I also got an eye infection and I’m taking antibiotic eye drops. It made reading for more than a short time impractical so I’ve been napping as the hospice nurse recommended and watching movies. My eye is getting better and I’ve been able to read today.
Movies leave me feeling unproductive but reading does not. More interesting is why being unproductive feels negative. I am driven to be busy, doing work. My parents’ example I assume.
Now my lunch has had long enough to settle so I’ll go for a nap.
May 11 – I’ve been avoiding saying “I hope” my situation will improve after I stop taking meds. Hoping would make my happiness dependent on circumstances, which, if they did not confirm to my hope, would make me disappointed.
For a little while I let myself think “it would be nice if” but that’s creating the same problem. I remember the monk who made a three year solitary retreat and when asked how it went said – “I wasted the entire time in hopes and fears”.
I call this “My ALS Adventure” because adventures present situations I could not have expected and I can learn from them. This is a rich learning experience.
Maybe a life spent learning was what I meant when as a teenager I decided wisdom was my life goal.
What I’ve learned recently is that equanimity is not enough. I don’t worry about the future. I accept my changing situation. But persistent extreme tiredness dulls my awareness.
Today, though, my guts are not in such turmoil, Dan, Megan, Sarah and Eleanor are coming and it is sunny.
May 12 – sleep is restorative. Tired as I am these days I sometimes lose focus on the present and look forward to my next sleep.
But a new thing has been happening recently. It now takes me a couple of hours to recover from a night of sleep. Felicity helped me adjust the BIPAP head band so all the air definitely blows up my nose and my blood oxygen saturation remains ok. It’s just an aspect of the latest stage.
May 14 – I watched the film about Stephen Hawking last night. It implies will power kept him alive so long with ALS. As Felicity said, if will power could do it, I’d be healthy. His brain must have been different in at least one more way in addition to high intellect.
The actor did a good job portraying his loss of function but because I’ve experienced it, I saw so much detail that was wrong. He couldn’t escape from the fact that his muscles really all worked.
My overall impression is that Hawking and his wife didn’t handle it well. She kept him alive longer than she could deal with and he remained selfish. They behaved according to concepts of how English people should deal with adversity, not as humans who love each other. She left him in the end for a kind and healthy man.
I think the c diff is gone but my guts have not entirely stabilized. The chorus of “Jumping Jack Flash” keeps sounding in my head — “it’s a gas, gas, gas”.
My increased weakness did not result from the c diff. ALS is progressing at a steady rate of decline punctuated by rapid spells.
What I have at last recognized is that although I am not worrying about dying or feeling angry about my condition, I do have to keep adjusting. What I could still do just yesterday I can no longer do today. I must keep figuring out the practical implications of these changes.
I think the process is a bit different for Felicity and me. She experiences more grief as well as thinking about the practical challenges. I also grieve, of course, but I have more sensory data to explore, which is interesting.
May 16 – when I’m walking and my legs tremble it’s good to notice that to avoid falling. What’s not helpful is to replay emotional responses to that change, to make a judgment about what is simply a fact.
I’m working to notice where the positive response to sensations ends and the story telling begins.
May 16 – to my family
I thought you’d like to know that I feel much better today. I have no idea why. I just mowed the entire area around the pond. Quite a lot of the grass was three feet high so I went slowly. It took an hour and a half. I feel good I will try to nap now because I’ve been doing that every afternoon.
May 22 – to my family
My guts never felt completely better after the 14 days of Vancomycin so we went back to my terrific family doctor today.
She says it’s quite common for clostridium difficile to survive the first campaign so I’m now on a month long regime of Vancomycin, initially four times a day then less frequent. If that doesn’t work there is at least one more step we can take.
I’m to take the probiotics forever more, which is unappealing because they are pretty disruptive in their own right.
So I suggest you avoid getting c diff!
The good news is the obvious truth that didn’t occur to me — c diff is preventing me from getting enough nutrition from my food. That’s why I’m so extra exhausted.
So it’s very possible I’ll have more energy again. That would be good — I want to do more mowing. I’d like to finish the floor in the summer kitchen, too, but eradicating c diff won’t make that possible. Mowing would be blessing enough.
Chronic exhaustion takes a toll. I’m still having no trouble maintaining equanimity and I’m not depressed. I feel happy when there’s a stimulus. But most of the time I feel neither happy nor unhappy, just very, very tired.
Paradoxically, I feel more tired when I wake up after a night’s sleep or an afternoon nap. That is presumably because even with the BIPAP I breathe more shallowly when sleeping.
Another obvious thing I’ve realized is how lucky I am that I was already 73 when my ALS started and I’d been retired for 14 years. I’d had an adventurous business career, enjoyed most of it and learned a lot. I’d had an adventurous retirement in which I also learned much that is important. And most importantly, I’ve had an amazing partner for more than half a century and we raised children who I could not love and admire more.
Who wouldn’t feel content after all that! It is so different for those stricken with ALS or anything similar when they are younger.
May 31 – to my family
I’m still taking antibiotics and my stomach bug and eye infection continue to get better. It’s taking a long time because ALS weakens the body’s ability to recover.
I can get from my chair and bed to the toilet but I can’t walk much further so we’ve been thinking about a wheelchair. It needs to be powered because I won’t be able to propel myself when my arms are only a little weaker, and Felicity couldn’t push me over the lawn to the car.
How to transport it? Before ALS I could easily have adapted the van. Not now. So we’ll have to buy a customized vehicle. Or could we just rent one? How often will I leave our house and why? To doctors? The hospice doctor will come here. There’s no need to go back to John’s Hopkins because they can’t do anything for me.
It would be nice to be able to go outside but many wheelchairs would be unable to handle the somewhat uneven terrain. It would be nice to go places with Felicity. We haven’t done that recently.
Good things about ALS are that there is no pain, no cognitive loss and it progresses slowly enough that one can adapt. But the exhaustion that comes with it is a severe handicap and there is less and less one can do over time anyway.
It’s a great opportunity to recognize the true nature of reality but one’s energy to make that possible fades.
May 31 – great news! Felicity’s huge amount of research has paid off. The ALS Society will lend us a power wheelchair that will fit through our back door and which can get around the yard. It will cost us nothing and be here in two weeks.
She got lots of conflicting advice along the way. Medicare would cover the cost but the approval process could take six months. Medicare would not help while I can still walk at all. The only chairs that would work in the yard are not covered by Medicare and cost $30,000 or more. Medicare will not cover a wheelchair at all now I’m registered with Hospice. And so on and so on. We still don’t know what’s possible with Medicare but it no longer matters.
I’m so blessed to have a loving partner who is a great problem solver 🙂
It’s evident in hindsight that the bug I mentioned in January was clostridium difficile. I’ve had it at least that long. It’s unrelated to ALS but it compounds my weakness. I’m only now close to getting rid of it.
April 17 to my family –
Yesterday, the 4th, I stumbled when I got up suddenly from my chair and started quickly to the left aiming for the bathroom. My balance felt a bit uncertain all day. It’s okay today but my gut is still upset. I’ve switched back to rice blended in water to give it a rest If it’s not better after the weekend we’ll see my doctor.
It’s likely the balance problem was triggered by my greater weakness from this bug but the root of it is ALS. Before I lose the strength to walk I’ll lose the ability to depend on my balance. I accept that but I felt a bit low all day.
I think that’s because I’d been regaining my new normal state of health before I relapsed. I’ve been healthy almost all my life and when I did get sick I quickly recovered so that’s what I’m used to. We don’t respond well to surprises when we’re tired. Our emotional habits kick in.
Today, the 6th, my gut still doesn’t feel right so I’m sticking with the rice plus a tablespoon of yogurt and some Gatorade power. I feel fine emotionally but tired.
Today the 7th I took a vegan nutritional shake with the rice. I wanted some nutrition. My gut feels closer to normal and I haven’t felt so tired but I still have very low energy. I enjoyed brief walks outside on the deck a couple of times.
Same diet today, the 8th, and my gut is working normally at last. My balance is a little unsteady which is likely at least in part because I haven’t been getting enough nutrition. I hadn’t checked my weight for a while. It’s down 10 pounds to 130 because I’m losing muscle mass throughout my body. I was staying at 140 because my belly was growing. It’s reduced a bit now.
I’m being cautious about going back to the formula. I’ll stay with the rice and nutritional shake at least today. If gut troubles return when I go back on the formula I want to be certain that’s the cause. I feel more steady today and I have a little more energy.
Late afternoon we go to a presentation by the owner of a cemetery in Harrisburg who provides Green Burials. The cemetery is well over a century old and attractive. The green burials, ones where the bodies are buried with nothing that will not biodegrade nutritiously, is in a wooded 12 acre area with a fine view.
Most of the trees are being cleared and the area is being planted with flowering shrubs and perennials. The bereaved families are invited to come on a day in Spring to plant their deceased one’s site according to the overall plan for the area.
The entire set of services is very thoughtful and they will be maintained well. The relatively young owner who started her career at IBM wanted her own business but never imagined it would be this. She was asked to buy the cemetery and came to the decision slowly. She enjoys nature and gardening.
I always thought I wouldn’t want a permanent site for my body and that’s not what I want now. But my family will enjoy being here and it will be attractive for everyone. We purchased sites for both of us. Mine will be planted with mountain laurel, the closest I can get to the rhododendrons I loved even in England. I planted one in the garden of our house in London.
Today, the 10th, I’m staying with the rice mixture. My gut is still upset so we’ll go to the doctor tomorrow.
My thorough and caring doctor says intestinal problems are not associated with ALS as far as she knows. She thinks I most likely have bad bacteria in my gut. She prescribes meds, wants stool samples, orders a checkup with a gastroenterologist and says I should go back on the formula.
This morning, the 12th, I start taking the meds. Then my doctor’s assistant calls. I have clostridium difficile and I need different medicine. Felicity is impressed by the diagnosis. When she was working as a microbiologist this anaerobic bacterium could not be grown in the lab. There must be a new method now. I’m just relieved to have a diagnosis and, therefore, a treatment.
It’s now the 17th. The meds seem to be working but I also have to take probiotics to replace the good bacteria. The bad effects of the bad ones seem to be gone but the new good ones are creating their own turmoil and I feel exhausted.
Now for the amazing news. The ALS Society suggested Felicity contact hospice. We thought it was available only to patients with less than six months to live and the average ALS patient lives for three to five years so I might have another couple. Turns out they serve all the terminally ill, which means I qualify. My doctor just had to say I am terminally ill.
A delightfully helpful hospice social worker came a couple of days ago and an equally helpful and empathetic hospice nurse came yesterday. She will visit us weekly. The immediate benefit is I now have a hospital bed at no charge! Everything they provide, and they offer a lot, is no charge.
The other immediate benefit, which is extremely important, is Felicity has people she can talk with who will answer practical questions and who can also provide expert emotional support. Longer term, Felicity can get practical help.
We commented to the social worker how unfair it is that this amazing level of care is available to us at no charge (it’s paid for by Medicare) but not to others. She said the painful ones for her are veterans who have suffered for years with no help and who she only gets to help when they are very close to death.
Every one of us is terminally ill with an unknowable time left. It would benefit us all, and be affordable, to make our society more kind.
April 30 to my family
The antibiotic almost got rid of my clostridium difficile but right at the end I relapsed. Now I’m on a new one that I take every six hours whose side effects are an upset stomach, gas and tiredness — the same as the c. diff. symptoms, hahaha.
Taking these meds four times a day, eating three times, taking other meds with some meals but not others, grinding them or removing their plastic case so they will go via the PEG tube… I’m eager for c. diff to be gone.
Holding the syringe in the tube this morning for the formula to drain into my stomach I realized it will be a major challenge to my equanimity when my hands give out. Felicity will feed me and I’ll be okay with that but how will it be when I can’t hold a book or write or type?
It will be hard for both of us which makes us even more blessed that a hospice nurse now visits every week. We can ask questions of someone with experience of ALS, not have to figure everything out by ourselves, or guess. I asked if it’s common for patients to feel more tired in the mornings. It is, even with the help of a BiPap.
Because my condition is always changing, the details and timing of our future are uncertain. The future always is uncertain but in most circumstances we can imagine things will stay the same. If we think about the future we can imagine them getting better. But I might be significantly weaker any tomorrow. The only certainty is that my overall health will not get better. It will be increasingly important for Felicity to have expert help.
Just before I started the new meds I was able to mow a path round the back part of the yard and beside the pond. It’s like riding a power wheelchair. The problem has been finding a good way to support my head now my neck muscles are so weak. The head is very heavy! Felicity came up with a modification yesterday that helps a lot.
We’re both enjoying Spring. It’s a blessing to be alive.
Is there a crisis on our southern border? For our border staff there and the ones they’re dealing with there sure is. There’s been a huge change.
A decade ago, it was almost entirely single adult men trying to sneak into the US. Now, quite suddenly, almost two-thirds of those at the border are families seeking asylum from extreme violence and drought in Guatemala and Honduras. Almost one percent of the population of those countries is on track to try to immigrate to the US this year.
Our border infrastructure isn’t set up or staffed to deal with that. Its mission is to detect people trying to enter illegally, not handle thousands of asylum seekers a day. Nor can our immigration judges quickly try them. The backlog is already over 855,000 immigration cases. Applicants wait an average of over 700 days to see a judge and it’s fast growing worse,
Children, families, and asylum seekers can’t be detained and deported because our laws are that; (1) asylum seekers can’t be deported until they’ve been screened by an asylum officer to see if they have a “credible fear” of persecution, (2) unaccompanied children from non-Mexican countries must be given for care by the Department of Health and Human Services within 72 hours and they are guaranteed immigration court hearings and (3) families can’t be detained indefinitely but must, in most cases, be released after about 20 days.
We allow asylum claims from those who pass through Mexico because Mexico has not signed a “safe third country” agreement that would allow us to deny asylum to Central Americans. However, we can make applicants wait weeks or months before they can step onto US soil and exercise their right to claim asylum because Mexico allows them to wait there.
This crisis is not one a wall will resolve nor is there any quick solution and we are far from alone. There is a global refugee crisis. At the end of 2014 there were almost 20 million refugees worldwide, almost 4 million of them Syrian and 2.6 million Afghani. Most of the Syrian refugees went to Turkey, Lebanon and Jordan but millions of refugees from the Middle East and Africa were accepted in Europe, notably Germany and Russia.
What to do? Establish in Congress what refugee and overall immigration policies we want, how many of what categories we will accept annually, change out laws correspondingly, put in place the corresponding infrastructure, and enforce the laws.
Some important changes would be very easy. We could, for example, make it very much harder to work illegality by making the existing eVerify system mandatory for new hires nationwide instead of in only a few states. It checks whether a person has the legal right to work.
Most aspects of the solution require establishing what our policy should be, however. That, not fear mongering or denial, is what we need to do, which will not happen under the current administration.
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.
Democracy is not possible when people think it’s okay to label and attack not listen to each other and no matter how they are governed, people who live that way cannot be happy.
People all across our political spectrum have increasingly turned to labeling each other but if we dismiss each other as a Nazi, Libtard, racist, socialist or whatever, we won’t hear what each other has to say,
What to do, then, when we are labeled in that way? I have a suggestion and a request, but before I get to them, here’s some background and an illustration of the issue.
Forty five years ago I set up a text based social media platform that was popular all across the business where I worked. But there were two problems. I didn’t know how to monetize it so it became a drain on computing resources that underpinned our business and, until a terrific moderator appointed himself, it was a platform for personal abuse.
Now the illustration, one of my periodic attempts to motivate thoughtful dialog.
One of my friends who is a very intelligent, loving, courageous, creative person is subject to terrible fears that lead her to post things like this: “Rep Omar is beyond terrible. She is a potential terrorist,”. She posted that in big letters on a red background.
It immediately triggered these comments “yep get her out” then “No. She is a terrorist. So is CAIR and 99.9999999% of her district in poor old Minnesota” then “trump supporters are racist nazis who have no understanding what e terrorist does” followed by “to compare a trump supporter to a Jew killing Nazi is dumb as a box of rocks- go back to your mother country!!! “
Labeling Omar as a terrorist and Trump supporters as racist Nazis made discussion pretty much impossible but I asked my friend: “Why do you think that? “
A few more insults were traded followed by: “She is a terrible person as is Tlaib” to which my friend replied “They are actually scary and why does Nancy Pelosi support them so much” which prompted “scary yes, educated women with the power to enforce the constitution over the repeated efforts of the Oval Office.” More insults.
Then my friend replied “She is clearly anti Israel.” to which I replied “she is anti the actions of Israel’s current government as are many of my Jewish friends.” Someone else then wrote “and Trump has defended Neo-Nazis who killed American Citizens. What’s your point beta queen?”
A few more insults followed then came “I think people are cool with antisemitism (see Dems in Congress) No big deal. Along with infanticide” I replied “She is definitely opposed to the policies and actions of Israel’s government, an issue that isn’t getting discussed in Congress. Is she antisemitic? Maybe but it isn’t yet clear. Is she being subjected to Islamophobic hate? Very much so. Here’s a sensible short piece by a liberal Jew who was brought up to support human rights.? Another guy and I exchanged two more good opinion pieces.
My friend then replied to the comment about Dems in Congress being cool with antisemitism and infanticide “you are so right. It’s so unbelievable”. I replied “are you saying all Democrats in Congress are antisemitic? Name one who is cool with infanticide” to which my friend replied “most of them”. I asked for evidence and said I would change my mind. Then I added: “There’s a big difference between antisemitism and being anti the policies and acts of Netanyahu’s gov’t”
Now a new person responded to me “maybe you should get informed instead of making Zen like comments. Try your amateur psychology on your dog or Libtard friends.” I replied “is there something in particular I should get informed about or are you only capable of vacuous insults?” to which he responded “No, can’t reason with uninformed snowflakes. I’ve seen your posts and they are absurd. Being stuck on stupid is your problem. If you can’t handle the truth then block me”.
While I was replying “you haven’t included any truth in your comments, only insults” another person commented “she put her hand on the Quran to be swore in. I don’t mean to say this might be over your head but if it walks like a duck, if it quacks like a duck it is a duck” to which I replied “The duck you speak of is a terrorist? Are you saying every Muslim is a terrorist?”
The first person now wrote “I can’t educate you. You’re likely a product of the failed public education system. As a wise person once said, if you argue with a fool others can’t tell you apart. Stick with your Libtard friends. I have no time for losers.” I responded “you have made no attempt to educate me. All you’ve done is try to intimidate me with insults” He replied “I have no patience for Libtards. Illiteracy is not a virtue. I suggest you get informed before you question others.”
The duck person now wrote “if they believe in the Quran they are not to be in this country. Period.”
There were a few more comments reiterating the terrorist, antisemite and socialist labels then I guess everyone moved on to the next whipping up of fear and hatred.
It would have been better if I hadn’t said “vacuous insults” even though the dialog wouldn’t have developed any differently. I knew I was wasting my time writing to him or most others who commented but I did get a couple of “likes” for “she is anti the actions of Israel’s current government as are many of my Jewish friends.”
After a day or two thinking I have a belief and a request to share.
My belief is that we must not just ignore labeling. We must keep trying, as skillfully as we possibly can, to encourage listening.
My request is, whatever your beliefs and no matter how badly you are provoked, please never label anyone, especially those you disagree with. There is more to every one of us than what’s conveyed by a label.
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.
Over here is a collection of trek and travel logs and pieces about the geography, history and people where I traveled. I was going to publish the Himalayan ones as a book but trek logs and the other material would most likely have appealed to different audiences. I left the geography chapters as they were but went back to the original trek logs and added many photos.
Although I’m posting them in chronological order I’m pretty sure that’s not the best way to read them. On my Spring 2003 treks in Sikkim and Nepal I found something that resonated in me very strongly but I had to research and go back to see what it might be. I’d learned a lot before my Fall 2004 trek to Kanchenjunga, was fitter and didn’t get sick, so I was more aware.
I think either the 2004 Kanchenjunga or the 2005 Tibet trip are the best places to start. The Iceland and a couple of other logs introduce people and themes that recur so they are probably best left for later. The history chapters can be read in any order as questions arise.
I’d very much enjoy your comments and you could help others by recommending where to start reading. Please comment on this post.
