My ALS Adventure – April 2018

I had a disturbing incident, upgraded my text-to-speech technology and began taking medicine to reduce the mucus that blocks my nose and triggers coughing.

April 7 – to my family

I try to give an accurate picture in my updates of what’s going on physically and how I’m responding so I’ll describe an incident yesterday.

The day before, I’d spent a couple of late morning hours cutting up fallen trees and carrying the wood to the woodpile.  I was very pleased that I had no acid reflux because even though I squat as much as I remember to do, there was a lot of bending to pick up the wood. I think it was okay because I didn’t start until three hours after eating.  I was disappointed, though, that my energy was lower than it was last Fall.

So, instead of my usual veggies for dinner that night I decided to puree some of the fragrant coq au vin Felicity had made, and complement that with half an avocado.  I know my soy-casein formula is nutritious but it just doesn’t feel that way.  I feel as if I’m on a diet of mac and cheese, hamburgers and fries — as if it’s keeping me alive but really isn’t good for me.  I had an urge for protein in a familiar form.

Next morning, yesterday morning that is, I had my usual 2 containers of formula then read for a bit.  I usually read for at least an hour after each meal but I wanted to check emails and the news so I went to my computer after only about half an hour.

Suddenly, I had a powerful burst of acid reflux.  There was a lot of it, it tasted very nasty and my throat refused to risk inhaling any of it into my lungs.  I was gasping, making horrendous gasping coughing noises, fighting for breath.  It felt like being under water.  I managed to force enough shallow in-breaths to stay upright, I did not vomit as I at first thought I might, and after a while my breathing returned to normal.  My stomach felt disturbed all the rest of the day and to a lesser extent through last night and into this morning.  I had no more food yesterday and nothing for breakfast today except water.  I felt like having coffee late morning today, I had a container of formula around noon, another one mid-afternoon and I’m about to have a third one now.  I feel  normal again 🙂

I think what happened had two causes.  Bending forward while at my computer compressed my stomach too soon over I’d ingested quite a large amount of formula, and that triggered the reflux.  The reflux was so acid and my stomach was disturbed because it no longer knows how to digest coq au vin.

It was scary for Felicity because I couldn’t write what was going on during the time I could hardly breathe, and I couldn’t explain it until I’d had enough time afterwards to think it through.  I’m pleased to report that I didn’t panic.

I’m telling you about this to give you confidence that my usual posts about how everything is pretty much okay are the whole truth.  It will also be part of my update on my website next month for the same reason and to say once again that while ALS is not an adventure I’d have chosen, it’s one I can’t avoid and, like all other adventures, the best way to experience it is as a learning opportunity.

April 15 – to my family

We went to Johns Hopkins on Tuesday to check out products for people who can’t speak.  

We started with a contemporary version of an Etch-a-Sketch because writing on a notepad works well for me but I didn’t like its fat stylus.  Writing will likely remain the fastest, easiest method for me, but my handwriting isn’t always clear so it will be better for others if I type more.

Next I tried an iPad and an iPad mini with Proloquo4tex software.  I liked the iPad mini and Proloquo is much better than the free software I have on my iPhone.  It will take some getting used to but it will be worthwhile.  I also tried some other text-to-speech apps that aren’t as good.

The specific problem an iPad and Proloquo will solve is emergency calling.  Right now I have no way to call an ambulance for myself while Felicity is away, or one for her while we’re both here.  With an iPad I could type what I want to say and have it spoken into my iPhone.  Maybe I could even learn to type fast enough for group conversations which I can’t do with my tiny iPhone.

We also asked a nurse about my reflux and blocked nostrils.  The reflux has pretty much only happened after I bent forward compressing my stomach too soon after eating.  She said I should sit quietly for an hour after eating, which I almost always do already.  She also suggested over-the-counter medicines that combat acid reflux but I believe my problem is just because all the food in my stomach now is liquid.

She had nothing to suggest about my blocked nose but did offer to retest my lung capacity.  I was happy about that, and pleased with the result.  The normal range with the instrument she uses is 80-100.  My score was 84 when I was diagnosed with ALS a year ago.  When it was checked a couple of months ago it was 72.  Now it is 74 and I felt I could have taken a deeper breath.

On Thursday I had my teeth cleaned.  I was dreading it because my teeth are very sensitive and I now produce so much saliva.  Well, my teeth are in better shape now I’m not eating by mouth.  There was much less plaque than usual and it was much less tightly attached to my teeth.  The experience was almost painless!

What else?  I’ve been eating just formula and not exercising since the coq au vin scare but my stomach has felt back to normal for a while so I restarted eating pureed veggies for dinner two nights ago.  I will restart exercise today.  I did some chain-sawing yesterday afternoon.

My main difficulty right now is blocked nostrils and I’m trying a spray for that.  Difficult breathing has made it hard to get to sleep for quite a while and more recently I’ve been having coughing fits that I’m almost certain result from post-nasal drip.  The dental hygienist said “everybody is getting that now because of the pollen”.

I don’t have much energy or strength these days but as I’ve said before, I’m expecting both to improve as I do physical work outside again.  I suspect my mostly-formula diet is also a factor.  I’ll keep you posted 🙂

April 16 – to my family

I tried mom’s CPAP last night. My nostrils were so plugged it could not push air through. My Tibetan doctor is sending meds that counter mucus. Maybe that will help.

April 16 – a reply

I get that with the CPAP too, but after a bit the air finds a way. Either way, you’d be prescribed a small mask that goes over nose and mouth probably, so it wouldn’t matter.

April 25 – to my Tibetan doctor

I haven’t had a recurrence of reflux since I last emailed you.  I think there’s less mucus since I started taking the Kundey — I do put some on my tongue every time.  I think my nose is less prone to blockage.  I feel like an alchemist grinding my various medicines each morning 🙂

Because my bulbar-related symptoms vary from day to day it’s hard to discern trends.  I’ve had a couple more coughing fits where I had great difficulty drawing breath.  They occurred late in the day and I think they were triggered by a problem swallowing saliva but I’m not really sure.  I have spells a few times each day where I produce great amounts of saliva for a while and I’m not sure if that’s getting worse.  I haven’t figured out what triggers them except that I always get one when I first go to bed.

I’ve often been more tired recently, which might be pollen allergy.  I stopped exercising for about a week but restarted yesterday.  I’m careful not to stress my body with too much exercise.  I enjoyed mowing for the first time a couple of days ago.

Consciousness a Feature of the Universe

I try, on the anniversary of my discovery of America, to reassess my understanding of reality.  Last year I saw it as an ever changing energy field where what “we experience as the Earth, our own body, atoms and so on do not in fact have fixed boundaries or any intrinsic nature”.

What, though, is experience?  It’s the product of consciousness, but what is consciousness?

We might say anything is conscious that grows, adapts to its environment and can communicate.  Trees are goal-seeking and communicate with each other, though, and it’s a stretch to declare them conscious.

A more stringent definition includes subjective properties of experience, qualia, that occur inside our minds.  That excludes trees, but what about animals?  We don’t really know  which animals, if any, have qualia.  Explaining how and why we have qualia is the famously hard problem of consciousness.  Why and how is our existence something we experience? 

What in fact is this thing we call mind where qualia arise?  Dictionaries tell us mind is “The element of a person that enables them to be aware of the world and their experiences, to think, and to feel; the faculty of consciousness and thought.”

But the mind also thwarts consciousness.  It shows us things that do not exist.  My mind did that, for instance, high above the Kathmandu Valley, showing me first a man in black, then a bear and then another menacing man, not one of whom was there.

All that’s puzzling enough but is mind a product of our brain or is its substrate outside our body?  Each of us arises from the universal energy field that does not have boundaries.  Could mind be an aspect of that energy field and also be without boundaries?  Could consciousness be a feature of the universe, like gravity?

And if mind is a product of our brain, is its scope localized there?  Do its inputs come only from the body of which the brain is part?  Dreams sometimes seem to incorporate real events we could not be aware of via our traditional methods of perception: taste, sight, touch, smell, and sound.

Also, do actions our mind initiates occur only via physical links in our body?  And are its operations even constrained by time?  The CIA published a summary of a great deal of research indicating that we can both initiate action remotely and see events before they occur.

Most of us have at least some experience of knowing what someone is thinking before they speak or when they are out of contact.  Species that flock communicate with each other so rapidly that shared thought seems the only explanation.  And there’s so much more —  some dogs, for example, know when their human master is about to have an epileptic fit.

There is a range of phenomena related to consciousness that don’t fit with the view that our mind is localized to our body:

  • Remote viewing — the ability to know something that is happening at a distance without the use of the physical senses
  • Remote influencing — the apparent ability to alter physical manifestation in an intended direction without a chain of physically causal events
  • Precognitive dreams — a person dreams about events that happen in the future
  • Survival hypothesis — consciousness continues after physical death

We call those phenomena anomalous because they should not exist if matter is the way we experience it, made up of continuously existent, indivisible atoms located within an absolute space and time.  If matter is that way we could, if we knew all the equations governing the spatial positions of fundamental particles as a function of time along with the initial conditions, know everything about reality including all that happened in the past and that will occur in the future.

Those phenomena are not incongruous, however, with our understanding of quantum physics.  Particles appear and disappear and we can know only the probability of their occurrence, space is not fixed and time is not absolute.  What we categorize as anomalous phenomena are inconsistent with the world we experience but not with the underlying reality.

What that suggests is, phenomena we consider anomalous but which have often been observed could be real aspects of consciousness.

Increasingly over the past year I’ve been puzzling over the Buddhist teaching that names the energy field I wrote about last year dharmakaya and the forms we experience nirmanakaya.  There are three kayas; dharmakaya, sambhogakaya and nirmanakaya.  I’ve been trying to see the nature of sambhogakaya.

My teacher explained sambhogakaya this way, that it manifests as five divine wisdoms:

  • All encompassing space that projects consciousness and is the source of compassion
  • Mirror-like wisdom, the purified form of “form”
  • Equality wisdom, bias toward none
  • Discernment wisdom, perception, and
  • Action wisdom, the purified form of “concept”

I’ve been thinking especially about the first wisdom, all encompassing space that projects consciousness and is the source of compassion.  My Buddhist practice is increasing my compassion, my urge to act kindly.  It just happens.  I also grow more aware of how self-absorbed I still am.

What’s happening is, I’m slowly shedding mental habits that obscure reality.  Our mind matches fragments of what we perceive against its gallery of pictures, stories and concepts, then we act on what it in fact made up.  That’s how above Kathmandu I saw creatures instead of what was there.

But why would fabricating less of what I experience result in compassion growing stronger?  Compassion must be an attribute of consciousness.  As I grow more conscious the natural result is I act more kindly.

When we can’t quite define a word it can be helpful to consider its opposite.   The dictionary tells us that opposites of conscious include unaware and unresponsive.  A related word is alive so another opposite of conscious is dead.  The deepest opposite of consciousness, however, is dreaming.

When we are dreaming our mind is not in touch, or very little in touch, with its environment.  Our fully conscious mind processes its environment accurately, however, providing us with a pure perception in response to which we are naturally happy and kind.

Consciousness was missing from my model of existence last year.  I hope to have fewer questions about it next year.

My ALS Adventure – Tibetan Medicine

My neurologist says I have one thing wrong, my motor neurons are dying, for which there’s no cure.  My primary care doctor says I am healthy apart from the impact ALS is having on my face and throat.  My Tibetan doctor’s observations, however, and her consultations with a Tibetan specialist in neuro-degenerative diseases say my condition is complex but may be curable. Here’s an overview of the theory and practice of Tibetan medicine along with some detail about its diagnosis and treatment of my condition.

Tibetan medicine is based on theories and practices derived from what developed into the major medical systems in India, Persia, Greece, and China, as well as ancient Tibet itself.  The primary diagnostic tools are highly sophisticated forms of perceptual skills that recognize physiological data through sensory means.  One of its most developed diagnostics tools is pulse analysis.  Inspection of urine and the tongue are also important.  Treatments include medicines primarily made from herbs and minerals, physical therapies like moxabustion (a form of heat therapy), massage, needle therapies (similar to acupuncture), and changes to behavior and diet.

The fundamental theory is that disease originates from wrong levels of nyepa, three bodily energies named rLung, tripa, and béken, each of which has five subcategories with specific locations and functions.  Disease results when these energies are disrupted by unhealthy diet, activity and/or environmental triggers.  The specifics of an illness vary with each patient’s background.

The theory seems unscientific to those of us who learn about human biology in the West but some recent research has shown correlations between the nyepa metaphor and modern genomics.  The symptoms classified under nyepa are in any case real enough so its best to think of them as diagnostic categories with related metabolic profiles and systemic similarities.  

Each of the nyepa is a potential cause of illness.  It is often said that disease results when the nyepa are out of balance but it’s more that each of them needs to be in its proper biochemical pathway, function, and degree of activity than that they need to be balanced relative to each other.  The three mental poisons—desire, aversion, and delusion—are the root causes that manifest the three nyepa.  Imbalances in them show symptom presentations that relate to these three emotions.  Everything that appears originates in the mind. 

rLung, (pronounced loong) drives all motility in the body (the ability of organisms and fluid to move), including all neural signals and muscular impulses.  It powers the circulation of our blood, respiration, our nervous system’s activity, sensory clarity, memory, the thoughts in our minds, and food through our digestive tract.  Defective rLung manifests from the poison of attachment/desire.

mKhris-pa, (tripa) regulates body heat, metabolism, liver function, blood generation, skin function and integrity, vision, courage, will, and intellectual acuity.  Defective tripa manifests from aversion/anger.

Bad-kan, (béken) maintains our physical structure; provides cohesion and adhesion in the body in terms of physical bulk, body oils and fluids; and facilitates joint health, sleep, and mental stability.  It creates a sense of satiation, contentment, and tolerance and allows us to have a stable mind.  Defective beken manifests from delusion/ignorance/indifference.

Tibetan doctors begin their diagnosis by asking the patient about their medical history and relevant parts of their personal history.  They then examine the color, odor, sedimentation, scum, vapor, and, after vigorous stirring, the size, color, amount, and persistence of bubbles and any deposits in a urine sample.  Next the doctor feels twelve distinct pulses at the radial artery of each wrist for the width, depth, strength, speed and quality of the pulse.  The color, shape, texture, moisture content, cracks, and coatings of the tongue are examined along with characteristics of the eye, such as the sclera (the white outer layer of the eyeball), to further confirm the diagnosis.  The doctor may also look for sensitivity at certain pressure points on the body.  The doctor’s own body is the diagnostic instrument.

Treatment includes behavioral and lifestyle modifications such as meditation which I was already doing, dietary changes, herbal medicines and in some cases moxabustion heat treatment, acupuncture-like needling and/or other physical methods.  Treating ALS and other neuro-degenerative diseases primarily with precious pills is one of the methods used extensively by Amchi Lobsang Dhondup, due to years of observing patient response.

There are several kinds of precious pills.  The one prescribed for me is Rinchen Ratna Samphel, a compound of 70 ingredients that is indicated for, among other maladies, facial palsy and speech impediment.

I take a Ratna Samphel pill once every 3 days to support proper development and function of rlüng pathways, particularly upward-ascending rlüng.  It cleanses the blood, rebuilds bodily constituents from cellular level to tissue level, consolidates and expels excess heat from improper blood formation, relieves tension in the upper body and re-establishes the functioning of rlüng, gut and blood together.  It releases toxins, rebuilds healthy white blood cells, facilitates proper neuromuscular signaling, decreases inflammation and infection and supports immune strength.  It also supports mental stability, stress management and sleep quality.

Mine is a rlungbéken compounded condition.  My high calorie diet is required because my body has a decreased capacity to eliminate toxins/pathogens.  rLung re-balancing requires nutritious, dense foods rich in high quality oils, and my deteriorated béken functions require foods that are easy to digest and that restore the digestive fire which breaks down what I ingest, assimilating what is useful and eliminating the rest.  Persistent bubbles and foam in my urine indicate that my overall béken level is too high.  That my rlung and bekan are disrupted indicates that my condition is associated with the poisons of attachment and indifference but not hatred, which has long been my own diagnosis.

Because Tibetan medicine explains things differently from Western medicine, here is a more detailed diagnosis of my condition.  It includes:

  • Upward-ascending rLüng disruption which impacts movement at the throat, larynx, pharynx and upper esophageal region, the tongue and nose.  This can be triggered by acute incident, traumatic event, or coordinated conditions.  In my case it was allergic reaction to the brown tail moths.

  • Béken proliferation that hampers digestion and metabolic processes.

  • rLüng disruption that affects neural signal trajectories and function.

  • Deficient liver-gallbladder synchronization with the gut which inhibits fat metabolism and overheats the liver and gallbladder.

  • Kidney imbalance resulting in the disruption of all intra- and extracellular fluids, interstitial fluids, serum, lymph, and cerebral spinal fluid, and the related metabolisms and processes between fluid spaces in the body.  This indicates immune compromise, and other disruptions in cellular signaling, lymph cycling, and filtration processes.

  • My gut’s ability to separate the nutritional essence, dangma, from the waste products, nyikma, at all cellular levels is reduced and is not well supported by my liver and gallbladder.  That disrupts my metabolism, impacts regeneration of all my bodily constituents, and causes excess heat and friction at the tissue and joint level.

rLüng needs warming, nourishing foods to eliminate inflammation that wears on the immune system pathways and decreases function throughout body tissues and organs.  Proper metabolism is necessary within the joints and tissues and related organ activity, lymph cycling, waste elimination and so forth.

When I was eating by mouth, I increased my intake of fresh foods and cut way back on coffee and the spicy, sour and salty tastes I love.  Now I take food via a tube directly into my stomach, I’m consuming 2,000 calories worth of soy-casein formula daily plus 500-600 ccs of a pureed mix of organic green (e.g., collard greens), colored (e.g., beets) and sulfur-family (e.g., mushrooms) veggies.  The veggie part of that diet is a combination of Tibetan medicine recommendations and the Wahls Protocol.

I also recently began taking an Oxaloacetic acid tablet daily because a researcher colleague of my Tibetan doctor considers it may help.  I expect I’ll need to increase my current total of around 2,500 calories on which I’m maintaining a weight of 140 lbs as my strength returns and I can do more physical work again.  My doctor will also recommend that I gradually replace more of the soy-casein formula with foods better suited to healing my condition.

I currently exercise in a way that is not aggressive or exhausting.  Our gut needs the support of exercise to stoke digestive heat, promote metabolic fire throughout the body, and get the lymph system better at identifying nutritional essence versus waste.  Intense activity would aggravate the rlüng and heat pathways within my body.  My current program is 40 minutes of work on a cross-trainer, 350+ calories worth, on days when I don’t take a precious pill.  My chief goal is to regain lung capacity that I didn’t realize I’d lost over winter.  I’ll keep building the intensity of that program slowly as my legs regain strength.  I also need solid rest to help align and calm the rlüng.  I sleep 9 hours a night on average.

Nourishing environments are also important, which means I now avoid harsh winds and moist or cool areas that would worsen my kidney heat deficiency, and harsh sound environments that are harmful for rlüng.  I will enjoy warming sunlight as soon as it returns but not overexpose myself to its heat.  I balance my time between people that feed my spirit (face to face and online) and being in solitude.

The pre-conditioning defects in my body’s energy systems that were triggered into ALS by a severe allergic reaction almost two years ago had presumably taken a long time to develop and the disease itself has since done serious damage.  It would be unrealistic to hope for a quick recovery and Tibetan medicine is not expected to restore health quickly in any case.

Amchi Lobsang Dhondup has achieved persuasive results with Multiple Sclerosis patients but he has been treating ALS patients for less time and ALS is different, a nervous system disorder not an autoimmune disease.  He has a shorter history of success with ALS but it’s enough to be encouraging.  My facial, mouth and throat muscles have continued to weaken slowly since I began his treatment almost eight months ago but I have not yet experienced the twitching in other muscles that is the first symptom of motor neurons dying.  Since I’m able to rebuild my strength with exercise, I believe I lost it over the winter not because of ALS but because I got almost no exercise then and I was not able to eat enough.

My treatment program may be slowing the progression of ALS and it’s possible my body is slowly curing itself.  There’s no way to know.  What I do know is I am blessed to be alive now and I will continue to report with equanimity whatever happens in the future.

My ALS Adventure – March 2018

This month I established an exercise program, added live foods to my diet, began taking a supplement that may be effective against ALS and continued to do a lot of reading. 

March 12 – to my family

I’ve built up to 35 minutes on the cross-trainer now, focusing on rebuilding leg strength and breathing capacity, not pushing too hard, and it’s making me feel better overall.  I do that on two days then rest on the third when I take a precious pill.

I’m still pretty feeble but I was able to cut down a 25 foot tree in the corner of the vegetable garden without difficulty and I’m almost finished removing a fallen tree where the rabbits hang out along with the huge wild rose that grew up around its base.  The only problem I ran into was some acid reflux when I was digging up the roots, which I also experienced picking up branches I’d cut off the vegetable garden tree.

I also had a fairly bad reflux an hour after breakfast this morning for no reason I could see and maybe that will continue to be an issue since all my food is now liquid.  I’ll squat to pick things up instead of bending and see what other changes help.  Several more trees fell or have large broken branches after the high winds so I’ll get plenty of practice outside.

I’ve started to add live foods to my diet that can be pureed enough to go down my narrow tube.  My Tibetan doctor gave me a list of foods to eat more and less of before I got the tube and we’ve refined that based on the Wahls diet recommended by a friend.  Dr. Wahls originally developed the diet to cure herself of Multiple Sclerosis then built it into a program that’s proven effective for a wider range of diseases.

Cantaloupe, kale with stems removed, avocado, onions and mushrooms have worked well so far.  Beets, bell peppers and broccoli should also be fine and I’m hoping to strain the seeds out of raspberries.  I have to avoid fiber that’s insufficiently blended and seeds that could clog the tube but other than that it’s just a matter of blending for long enough with enough water.  I was surprised how much water I had to add to avocado.

Another friend sent information about an over the counter supplement, oxaloacetate, that is said to be effective against ALS.  My Tibetan doctor says it could be possibly helpful since it is an important component of the Krebs cycle, which the Wahls diet promotes.  One of her colleagues will review some recent unpublished studies to see if there is convincing evidence that it’s specifically helpful for ALS.  Meanwhile, since she says it would not hurt to try oxaloacetate, I’ll do that.

I’ve been reading for an hour or so after each meal to let the formula settle and I’m guessing I’ll need to keep doing that.  I do a lot more reading on precious pill days and spend quite a bit of time online.  As my mind slowly regains sharpness I notice I’m spending less time following the news and being more selective about opinion pieces.  I’ve been catching up on what turn out to be some excellent books.


March 29 – to my Tibetan doctor

My facial muscles are continuing very slowly to weaken but I’ve regained some strength overall and I’m feeling good.  The weather continues too cold to work outside most days but it will soon change and I’m eager for that.  I’m happy and having no trouble maintaining my equanimity.

I began adding veggies to my diet on March 8.  By the 14th I was taking 500-600 ml of pureed green, colored and sulfur veggies every evening and I stopped taking a fifth container of Nutren 2.0.  My weight had stabilized at 140 lbs on a daily diet of 2,500 calories from 5 containers of Nutren but with the added veggies I was gaining a pound a day.  Now on a steady daily diet of 2,000 calories of Nutren plus the 500-600 ml of the three kinds of veggies I’m re-stabilized at 140 lbs.  I’ve had no trouble digesting the new diet and it feels healthier than formula alone.

I began taking an Oxaloacetate tablet daily on the 19th.  I haven’t noticed any results and don’t expect to for quite a while, if at all.

I built up slowly from 25 minutes on the cross-trainer at the start of March on the two days when I don’t take a precious pill to 40 minutes.  The cross-trainer says that’s 350+ worth of calories.  I keep my maximum heart rate at twice its resting rate or less.  I’m focusing more on rebuilding the lung capacity I didn’t realize I’d lost over winter than on leg strength.  As my muscles regain strength I’ll increase the intensity of the workout correspondingly so as to maintain the overall benefit.

I’ve applied to participate in a program to establish the extent to which ALS patients can measure their own vital signs.  If accepted I’ll be able to track my lung capacity and etc.

Restoring my dharma practice has been a slow process after I stopped temporarily while recovering from the tube insertion.  I continue to do two daily sessions of an hour each, starting at around 10 am and 4 pm and my motivation remains strong but I’m much more vulnerable to discursive thoughts and the experience is weaker in general.  My concentration is slowly improving, though, and I have been getting occasional glimpses of new aspects of what’s pointed to by what I’m saying.  I was much less prone to distraction when I was able to chant aloud.

I have to sit quietly for an hour or so after each 500 ml liquid meal to allow my stomach to settle because if I don’t, I’m apt to get stomach contents coming up my throat.  I also have to be careful not to bend forward too far any time I’m doing anything physical because that causes acid reflux that I never used to experience at all.  There’s probably nothing I can do about it but I’ll ask the ALS clinic folks at Johns Hopkins.

A couple of other things I’ll ask them about are a recommendation for an over-the-counter way to ease the nose blockage I often get now my weak lips make blowing my nose impossible, and if there’s anything I can do about the cheek biting I experience most of the time now my cheeks are so weak that they flop between my teeth.  Neither of these is a big problem but I’d enjoy not having the experiences.

I’m still enjoying the extra reading I do while resting but I’m increasingly eager for productive physical exercise, too.

Several people have asked me to write about Tibetan medicine and my own treatment program.  I’m close to finishing a draft based on a combination of research and content extracted and edited from your emails.  I’ll send it to you for feedback before I publish it because I don’t want to mislead anyone.  I hope you’ll have time for that.

Mass Shootings – The Context

I explored how to prevent more such killings after the school massacre in 2012.   Nothing was done then or after subsequent massacres and now we’re horrified again by the massacre in Florida.

Why do politicians text “thoughts and prayers” and do nothing else, and why do we accept that?   Because our culture is steeped in violence.  School massacres are exciting news but they are a tiny proportion of the everyday killing we pretty much ignore.

Around 30,000 Americans die annually from suicide, homicide and accidents involving firearms.  We’re ten times as likely to be killed with a gun as people in other developed nations.

Thirty Americans murder one another every day.  We’ve had 270,000 murders since 2000 and police killed over 12,000 people from 2000 to 2014.

We’ve killed over 20 million people in 37 countries since World War II.  Our military forces were directly responsible for 10 to 15 million deaths in the Korean, Vietnam and Iraq Wars. and in wars where we share responsibility there were 9 to 14 million deaths in Afghanistan, Angola, the Congo, East Timor, Guatemala, Indonesia, Pakistan and Sudan.  We’re waging war all over the world from almost 800 military bases in over 70 countries and most of us have no idea where or why.

To support and extend all that killing Congress voted nearly unanimously to increase military spending to $700 billion in 2018 and $716 billion the following year.  That’s an extra $165 billion over two years, which is more than the entire military budget of any other country except China.  The military spending we’re told about consumes 57% of federal discretionary spending.  Hundreds of billions more is buried in other budgets.  In fact, we spend well over a trillion dollars per year.

We do all this killing because fear and fascination with violence is so deep rooted in our culture.

Our ancestors destroyed those who lived here before and they imported and brutalized Africans to do their work.  In my lifetime, Russian and Chinese communists were going to destroy us.  Since 2001 global terrorism has been the existential threat and now we’re told we must also prepare anew for war with Russia and/or China, which means we must spend over a trillion dollars on new nukes.

Much of what we’re told to fear is nonsense.  Domestic right-wing extremists, for example, killed three times as many Americans as Islamist terrorists did between 2001 and 2015.  We’re twice as likely to be shot by a toddler as by a terrorist.  North Korea’s leaders have a perfectly sensible reason for wanting nuclear weapons – the threat from us.  And so on.

Meanwhile, real causes for concern are ignored.  Shootings of all kinds, accidental by toddler, intentional by alt-right terrorist, or whatever are inevitably commonplace here because we are by far the most heavily armed nation with the loosest gun regulations in the world.

We have 114 million handguns, 110 million rifles, 86 million shotguns and an estimated 1.5 million military-style weapons like the AR-15.  The AR-15 used in school and other massacres, the civilian version of the military’s M4, is designed to obliterate human flesh.  As Florida Sen. Bill Nelson recently stated“I’ve hunted all my life … but an AR-15 is not for hunting.  It’s for killing.”

Why do we need guns for killing?  We’re told it’s to protect ourselves.  In fact, the 2nd Amendment was so we could defend our country without a standing army.  Our Founders said we should not have a standing army because if we did, we’d always be at war .  We’ve proved them right.  The idea that the 2nd Amendment protects an individual’s right to bear arms not just so they can be ready to support a state-sponsored militia dates only from a 5-4 Supreme Court ruling in 2008.

We’re fascinated by violence.  Our heroes have always been militarized.  First it was Minutemen.  It was Wild West gunslingers when I was a boy.  Now it’s Special Ops.  The lone killer who defends what’s right is a powerful national myth.

We support but don’t think about the destruction and killing we do overseas.  We don’t think very much at all, in fact, mostly just believe nightmares fed to us.  The roots of our insecurity are old and very strong.  From them grows our fear and that from that comes our sense of entitlement to wreak violence.

It  will take many, many years to transcend that legacy and we will do it only by taking step after step away from what we now consider normal.  Here’s a step we took.  More than 4,000 black Americans were lynched between the Civil War and World War II.  Then Billie Holliday and others made us stop accepting that viciousness.  She made us wake up and feel.

I’m hoping we’re being woken up now by our children so we will take a new step.  I’m hoping the time will soon come when we will ban assault weapons and make other changes to end school massacres.

My ALS Adventure – About Grief

I’ve been thinking about this from a dear family member:  “I think it’s ok that while “trying to spot where habitual experiences no longer correspond to reality” we also grieve the loss”.

Is grief in fact a healthy response to loss? 

I’ve written before about my Buddhist classmate whose husband had very recently died after a very short illness.  “Many of us grieve for two years or more” I told her.  “I hope you will not suffer such pain for so long”“I’m not trying to avoid grief” she replied.  “I’m bringing it onto my path”.

She was courageously observing her suffering and by noticing and reflecting on her emotions, she was training herself to accept her new situation.

Grieving is not noticing and reflecting but wallowing in suffering.  It is self-pity.

In grief we torment ourselves with dreams of the past and fears of the future, numbing ourselves to the present until at last we’re worn out and we grudgingly accept the new situation.  That’s not healthy.

What is healthy is to notice and feel our experience now, to remain fully alive.  We can feel both the moments of sadness and all the other thoughts and feelings without getting trapped by them.

When one of my grandchildren speaks and I can’t reply, if I just notice my sad feeling then smile and respond in whatever way I can, the sadness vanishes.  Better for me and much better for my grandchild.

It can be like the sadness that sometimes comes even now, fifty years after she died, when I want to talk with my mom.  That sadness is momentary.

When I poured my formula this morning a memory of the fragrance, taste and texture of delicious fried breakfasts arose.   I was sad for a moment because I can’t enjoy them now.  Then I saw Felicity smile.

Grief is wallowing in movies manufactured by our imagination.  We’re so habituated to them that we often don’t even notice when they start to play.  The moment we do, however, we can open our senses and feel our fresh new experience in this moment.

Of course, it takes practice to notice when our movies start up and although I practice diligently, I do still sometimes fall for them.   But I notice them sooner and that’s liberating.

Felicity said it all so much more clearly 🙂

Felicity’s Reply

There have been many occasions when I have grieved, when Martin first received the diagnosis, when he could no longer talk to me, when I was afraid that we might not be together much longer and at all the little milestones along the path of his illness, but I have mostly come to terms with it now.

I realize that Martin is still here, that we can still communicate, and that fortunately the ALS does not seem to be spreading to other areas yet.  The PEG tube has made a huge difference.  I don’t have to worry every time I hear him coughing after eating, afraid that he has inhaled food and will end up choking or with pneumonia.  I don’t have to watch him struggling to swallow teaspoonfuls of food at each meal, and he is getting stronger by the day.

I find it more helpful to analyze exactly what I’m feeling and discuss it with Martin than let an overall feeling of sadness and despair take control.  I’m part realist and part optimist, I’ve always tried to accept what is and figure out ways to make life better for both of us under the circumstances we find ourselves in at any given time.

Interestingly, I found the transition difficult from always being conscious of what I was going to make for dinner and choosing food that Martin would like, to only having to please myself once he had the PEG tube and subsisted on a formula.

I’ve spent the better part of my life taking care of others and it took me a couple of weeks to not feel guilty at just pleasing myself, eating salads instead of a cooked meal for dinner etc.  I’m over that now though I do still miss it at times.

My ALS Adventure – February 2018

Although it took longer than I expected to adjust to a new diet taken by tube and I hadn’t expected my mind to slow down, by the end of the month I was recovering well.

Feb 5 – To my family

I started keeping a daily diary when I had the feeding tube installed so I could keep track of my recovery.  I imagined it would take a week but it has taken two, chiefly because the only food I get now is so very different.  It has taken my gut a couple of weeks to figure out how to digest it.  All I’ve done for the past couple of weeks is read, which was great, but now I want to start doing things again.  Fortunately, the cold weather will help me to be sensible about that.  I’ve felt cheerful throughout my recovery 🙂

Here’s the diary:

Day 1 (Jan 23) – I don’t remember anything about the surgery, which took very little time, just feeling not a lot different while in the recovery room but less comfortable while we drove home.  The nurse had come the day before the surgery to tell us everything we’d need to do and she came again when we got home.  She showed us how to proceed by feeding me a container of the high-calorie soy protein formula and a couple of Benadryl tablets to help me sleep.

Day 2 – I slept soundly for 11 hours.  The wound was a little painful and I felt as if I had a severe stomach upset, but I was comfortable lounging in my recliner and I was able to ingest three containers of the formula.  That’s 1,500 calories.  I’ve been prescribed 2,000 calories per day.  I’ll need more than that to maintain my current weight.

Day 3 – By the time night came I felt very tired so I took nothing to help me sleep.  That was a mistake.  It took me a very long time to get to sleep and I kept waking myself up by biting my cheeks.  I felt exhausted by morning but slowly felt better as the day progressed.  We were able to get all 4 containers of formula into me during the day.  At the surgery wound I felt the kind of pain when a wound is repairing.

Day 4 – This night I took 2 Benadryl again and I slept soundly for 11 hours.  The surgery site felt better and my stomach felt normal.  I felt good all day and ingested 3.5 containers of formula.

Day 5 – I took one Benadryl that night and asked Felicity to wake me to feed at 8 because I felt okay to go to a screening of Tosca at the Met the next day.  I had 1.5 containers of formula when I woke but not enough of it was digested to make room for more in my stomach by the time we had to leave for the theater.  On the way home after the terrific performance I wanted the taste and texture of food in my mouth for the first time since I stopped eating that way.  I had 1.5 containers of formula when we got home at around 4:30 .  Not enough had digested by 9 pm so I had only 1,500 calories this day.

Day 6 –  I woke after 9 hours and took 1.5 containers at 9 am.  I feel the need to be cautious with the feeding tube although It feels as if it’s healing fine.  This afternoon it again feels odd to have stopped eating.  I ingested 1 container at 2 pm and the remaining 1.5 containers at 8.  It all went well.  This is the first day when my feeding proceeded without difficulty and on a predictable schedule.  This is a substantially greater change for my system than I imagined.  It’s not just a different way of feeding that doesn’t involve the mouth, it’s an entirely different form of nutrition.  My only food since the surgery has been a soybean-based formula.  My body is getting its energy from a completely different source.  Different enzymes are required and there are no solids.  There is no stimulation from the mouth.

Day 7 –  I have some feeling of caution when I move but I don’t feel like an invalid.  I still can’t quite concentrate on anything intellectually demanding.  I feel as if I’m powered by a gas engine that is now being fueled by kerosene.

Day 8 – My brain is working better.  I’m able to give feedback on a chapter of Doma’s thesis.  I go for a walk for the first time.  It’s cold and the wind is strong so it’s a short one.  I ingest 4 containers of formula but it took seven hours to digest the first container and a half.

Day 9 – I give myself food and meds without help for the first time.  This is the first day the place where my tube is attached does not feel fragile so I have a shower.    I feel normal for the first time.

Day 10 – I expected to be back up to pre-surgery level of energy today.  Wrong; I read for a little while after feeding myself breakfast then napped for two hours.  I had only one container of food six hours after breakfast because there wasn’t room for more.  Instead of adding water to the formula with the evening feeding I had two containers of formula, a total of 2,250 calories for the day.  I’ve lost a few pounds and I can’t afford that.

Day 11 – More energy today and a lovely visit by Dan and family.  I had 4.5 containers of Nutren and one of Ensure for a total of 2,700 calories.  I’m coughing much less now, which must mean some food was getting into my lungs before.

Day 12 – My energy is okay today.  I’m starting to miss the pleasure of eating, not just the enjoyment of a meal with others but the eating itself, the tastes, fragrances, textures.  I will train myself to enjoy memories of eating, not regret that I can’t have the experience now.

Day 13 – To Johns Hopkins for a checkup with my neurologist and the folks at the ALS clinic.  Everyone is friendly and very helpful.  The neurologist said: “You definitely have ALS but perhaps you will be one of the few whose symptoms do not spread to other muscles.”

We will go back in April so I can try a bunch of text to speech tools although I suspect writing will always be quicker for me.

The nutritionist will do what needs to be done so I can get 6 containers of formula per day, i.e., 3,000 calories.  She says I can switch to that now using the supply I already have because it won’t be a problem.  I seem able to digest the formula okay now, so I’ll move to 2,500 calories tomorrow and restart work, cautiously, on the cross-trainer.

The only change they detected today was reduced lung capacity which I believe is because I stopped cardio-vascular exercise quite a while ago and I have gotten very little exercise at all for the last few months.  My arm and leg muscles are visibly smaller.  It will be very good to regain strength.

I also had a liver function test.  I’ll let you know the result.

The nurse who came to show us how to use the PEG tube was wonderfully helpful.  She’s very smart, was a dairy farmer for many years, and she studied Tibetan culture among many other things in college.  My neurologist who is Indian, very much enjoyed my Namaste greeting, and he is very happy that I’m doing so well and have a good attitude.  All the specialists from the ALS clinic were super helpful.

I’m very lucky to be in such great hands.

Feb 5 – from Felicity

Martin I think you summed it up pretty well. The formula food has a casein/soy protein base neither of which you are used to digesting so the necessary gut bacteria will have to have time to adjust their populations.

It is a big shock to the system to have a tube shoved through a hole into your stomach, both physically and emotionally let alone just recovering from any surgery so it’s not surprising that it’s taking a while to regain your energy. Upping the calories will help too. You are adapting very quickly to the new feeding regime and looking stronger every day. It’s such a relief not to hear your scary coughing after a meal now.

Feb 5 – From one of my sons

From an outsider’s perspective, not seeing you everyday, you seem healthier than at Thanksgiving… I could see a change in your mouth perhaps, but you seemed in good spirits 🙂

Feb 9 – To my family

All results from my liver function text are well within the acceptable range.  It occurred to me afterwards that the neurologist may have ordered it in part to make sure the precious pills are doing no harm 🙂  I haven’t restarted them yet because they do have a powerful effect but I should be able to pretty soon.

We went to see the surgeon yesterday.  He proclaimed the tube’s location “picture perfect.”  He also said I don’t need to be so cautious about when I feed myself as the nurse told us.  He said my stomach will expand to accommodate more food even if it still contains some that is not fully digested from my last feeding.  That’s good news.

Today is my fourth day of feeding myself 3,000 calories per day and I feel better.  My weight had dropped to 135 pounds and I was back to 138 last night.  I started doing 10 minutes at very low intensity on the cross-trainer on my first 3,000 calorie day.  I’m now doing two 12 minute sessions per day and I feel better as a result.

I’ve noticed one physical and one mental change.  The first medication I took to reduce salivation wasn’t very effective so I was advised to switch to atropine drops under the tongue.  They’re normally used as eye drops.  They are, as the ALS clinic lady said they would be, very effective.  The downside, though, is my mouth feels parched.  I have a tremendous desire for a cold beer, or even cold water 😉  I haven’t figured out a solution yet because now I’ve stopped coughing I don’t want to swallow anything and risk stuff getting in my lungs again.  Sucking an ice cube wouldn’t work because my mouth is much more sensitive to heat and cold.

The mental change is, I’m missing eating much more.  That results partly from the parched feeling in my mouth.  Felicity was munching fried chicken and French fries on the way back from the surgeon yesterday and I so much wanted to put one of those fries in my mouth.  But it’s also that eating is such a big part of our lives, especially meal times with our loved ones.  It’s just not the same sitting with Felicity unable to talk and also unable to write replies while I’m tipping formula down my tube.  It doesn’t take long to feed myself now though, so I’ll get used to that

So all’s going well and I continue to feel blessed to be alive.

Feb 13 – To my Tibetan doctor

I’m going to restart the precious pills tomorrow morning, an auspicious day.  It feels as though my body is still adjusting to the formula but I’ve regained 5 lbs and I’m back to 140.  The feeding process has become routine and uneventful.

A few days ago I resumed exercise on the cross-trainer at very low intensity.  It feels positive but I’ve lost so much strength.  There’s no sign of twitching in my arms or legs so I believe it’s just the result of too little food and almost no exercise for too long.

I’m wondering if that lack of exercise also explains the weakening of my diaphragm.  I think I mentioned that my lung capacity was lower when it was tested at the ALS clinic?  I just did 12 minutes on the cross-trainer and had to pause after 9 minutes because I was going a bit harder than on previous days and I was having trouble getting enough air.  I rested for a short time then did the remaining 3 minutes at a slower pace and I feel fine.  I just can’t breathe as deeply as before.  It would be welcome if that corrects itself as I slowly build up my exercise program.

I paused my practice while I was adjusting to the feeding tube because I couldn’t sit in that position without risk of acid reflux.  I can sit without difficulty again now but I’m having a lot of troubling focusing.  I don’t feel worried, it’s just that my mind keeps wandering off in discursive thoughts.  Focus will return when it does 🙂

No other news.  All’s well.

Feb 16 – To my family

This morning I understood at last what one of my teachers meant when he suggested we turn our eyeballs inwards.  He was pointing to the context in which our sensory input becomes our experience.

He was referring not so much to our ideas as to our emotional expectations and our stories that go along with them, which are also the raw material for our dreams that are triggered by incidents during the previous day.

I realized that my experience since I got the tube is off in some way, so I’ve been looking inwards trying to spot where my habitual experience no longer corresponds with reality.

Adapting to the new diet and method of feeding takes a little time but it’s really pretty easy.  The mechanics of taking meds, formula and water and keeping the tube and incision area clean are all common sense.

I slowly and steadily got my weight back up to 140 lbs on 3,000 calories a day, then dropped to 2,500 calories so I don’t keep gaining a pound a day.  I imagine I’ll need to up my calories when I start working outside again because I’m doing almost nothing right now except reading and online stuff.

I postponed restarting the Tibetan precious pills until a couple of days ago to give my body the chance to adjust fully to my new diet.  It’s much easier to take the pill via my tube than my mouth (they’re very bitter) and I felt fine afterwards.

Watching my body is not something I’m used to, though.  I’ve been healthy almost all my life and it was obvious on the few occasions when I wasn’t.  But part of my body has been weakening for almost two years and it has now stopped working altogether.  I’m not worrying about the future as far as I can tell, but I am trying to notice changes, and when I detect them I of course try to form a theory about them.

I intended to do two 12 minute sessions on the cross-trainer daily but I’ve only had the energy to do one, and when I pushed too hard a couple of days ago I had to pause after 9 minutes because I was so short of breath.  I was soon fine again and I did the remaining three minutes without difficulty but then I remembered the technician at my recent ALS clinic visit saying my lung capacity is reduced.  I wondered if my diaphragm will regain strength as a result of the cross-trainer program and how long that may take.

Then as I watched the casein-soy formula going down the tube into my belly this morning I began to wonder about the health of this diet.  It seems so artificial.  I thought, maybe this is like subsisting entirely on pureed Big Macs, fries, donuts and soda.  Of course, it isn’t — it’s better for me than what I was eating before.

I haven’t been looking inwards long enough to identify where my life experience is out of kilter with reality but I feel like I’m onto something.  It’s good to notice how changes in my body and its inputs are changing my life experience, but it would be a mistake to spend a lot of time thinking about all that.  It could even be that thinking about it is most of what is off about my experience.

My daily health diary is helpful because there’s so much variability in my symptoms.  The parched feeling in my mouth went away after 4 days, for example.  I thought atropine saliva reduction drops might be the cause so I stopped taking them.  I barely dribbled for a few days but then it started up again so I resumed the atropine.  I’ve been taking it for a few days but I’m still dribbling.  On the other hand, my mouth doesn’t feel parched.  This is why thinking about what’s going on while it’s happening tends not to be very productive.

What I am sure about is, my body is regaining strength, I’m eager for Spring so I can start working outside again, and in the meantime I’m enjoying reading.  I’ve read about half my books about the Abrahamic religions and the Middle East that I bought years ago hoping to read them soon and I’ve also been reading some very moving recent novels.

I hope this email makes some sort of sense?  I’m happy and everything is fine but I’ve begun to realize that my life is more different now than I was acknowledging and that I’m not yet experiencing it with full clarity.

Feb 25 – To My Family

Felicity says I look much better now.  I move more purposefully and look happier.

That’s very encouraging because I’d just handed her a note saying:  “I was so relieved when I finished 15 minutes on the cross-trainer, then I saw in my daily log that I’d done 20 minutes the last couple of times”.

Felicity said the same thing a week or so ago, too, so it must be true despite my own feeling of frustration that I haven’t regained my strength yet.

I started on the cross-trainer almost three weeks ago, beginning at very low intensity for 10 minutes and doing that daily.  I don’t do it on the days when I take a precious pill now I’ve restarted that regimen but I’ve been increasing the time and intensity on the two days between pills.

I feel better after I exercise and it also felt good to get outside and dig up an old grape vine in a flower bed a few days ago.  I try to remember it will take me longer to regain strength now I’m 73.  I’m persistent but I’m really not all that patient.

Feeding myself via the tube is quick and very easy.  There’s no actual pleasure in it, though, because there’s almost no sensation.  I do get fragrance up my throat when it digests, however, and that feels like tasting.  So I tried putting coffee down the tube and was delighted to get that fragrance, too.  Then I tried a beer and while it’s not even close to the experience of drinking one, it does feel good.

It’s been raining for a few days, which the grass likes.  It will be soon be time to start mowing and I’m looking forward to that.  I’ve been enjoying the opportunity to do a lot of reading but doing nothing other than reading leaves me feeling like an invalid.

My ALS Adventure – January 2018

This was when I had a feeding tube installed.  I explain how it was done.  Next month I’ll write about adjusting to the new way of eating.

Jan 3 – To contributors to Doma’s college education

Note:  Doma is an amazing young woman from Nepal whose education we’ve sponsored for the last ten years and who will graduate from Hampshire College in MA this May.

I haven’t said anything about myself during the long campaign on Doma’s behalf because I wanted the entire focus to be on her but now the funding is complete I’ll give you a quick update.

We’re happy here in farming country outside Gettysburg, close enough to visit our kids and four young grandchildren.  The pre-Civil War brick farmhouse, outbuildings and seven acres of land were extremely run down when we bought the place but we liked the area — looks a lot like where we grew up in England – and I thought I’d have fun doing a lot of the renovation myself and managing the work I lack the professional skills to do.  I was right: it has been very satisfying — and there’s more yet to keep me happy.

The negative news is, I was diagnosed with ALS at the start of this year.  It began in my mouth and throat but it hasn’t yet progressed to other muscles.  Because it’s now more than 18 months since the first symptoms, it’s increasingly likely it won’t progress, and a few months ago I was introduced to a doctor of Tibetan medicine who has cured many MS patients and more recently also cured a growing number of ALS patients.  ALS is incurable by Western medicine but perhaps the Tibetan treatment I’m getting will work for me, too.

I feel blessed to have been doing my Tibetan Buddhist practice for long enough that when I was told to expect rapid weakening of all my muscles and death within one to two years, I saw it as a great opportunity to train myself in equanimity.  Now it seems likely I will live longer, I’ve grown more frustrated by my loss of speech and the enjoyment of food, the amount of time and effort eating takes, and so on, which makes this a new opportunity to train in equanimity as well as in relishing my blessings.  If I recover, I can practice extreme gratitude 🙂

Jan 4 – To my Tibetan doctor

I don’t think my tongue has shrunk further and Felicity agrees, so the change in how things taste presumably does, as you suggested, result from the Riluzole saliva reduction medicine.

I slept 10 hours last night and woke feeling fine.  I haven’t had a recurrence of waking for no apparent reason as I did for a few days right after Christmas.  I felt on the verge of mild despondency and suspect it resulted from processing my isolating experiences at Christmas and perhaps fighting off a heavy cold from which Felicity is still recovering.  My morning hour of practice today felt restorative and illuminating in the same way as before Christmas.

Difficulty sleeping is an example of how each of the bulbar-controlled muscles has to work well for the entire system to function effectively.  I can’t blow my nose because my cheeks and lips are weak.  I can’t generate much pressure and my lips can’t contain it, anyway.  That results in my nose getting clogged, but I can’t breathe through my mouth without dribbling.  I can’t lie on my side because the upper cheek sags down between my teeth and gets bitten.  The only way I can sleep is on my front with one hand under my face applying pressure that keeps one nostril open.  So long as I keep my head elevated a bit, the saliva drains down my throat so I need to stay still, which usually isn’t a problem.

It takes a while to figure out solutions like that, especially because what worked a few months ago might stop working if the muscles weaken more, but it’s interesting to someone like me who enjoys finding solutions to problems.

Jan 17 – To my family

You know I’m getting a PEG (feeding) tube installed next Tuesday but I don’t think I’ve said much about it. I was recommended to get one several months ago because the big risk for patients with swallowing problems is food getting into the lungs and causing pneumonia, but I was always bad at taking advice 😉

I’m pretty sure I haven’t been getting food in my lungs but the weakness in my tongue, lips, cheeks and throat has made eating increasingly difficult.  I can take only small spoonfuls and I must wait for the last one to get to my throat before I can take the next.  Drinking is even more difficult and, like food, it must be a specific viscosity.  Also, for reasons I don’t understand, drinking provokes coughing fits that persist for up to an hour after I finish a glass of Ensure.

Eating has become all too much like working on the cross-trainer.  Pretty soon after I start, a voice inside my head starts saying, “You’ve done enough.  You can stop now”and I have to keep replying, “No, I haven’t finished yet.  I can handle another 5 minutes”.

Figuring out what to eat and how that changes is somewhat interesting.  I’ll probably have to start all over again with the tube.  ALS patients need more than the usual number of calories, presumably because of the subtle muscle twitching.  I don’t have that but I need 2,500 to 3,000 calories a day to keep my weight at 140 lbs and that is a struggle.

I didn’t feel hungry at all yesterday morning, for example, so I blended my usual 3 chicken patties and a cup of rice for breakfast but I didn’t add the usual two eggs that take the meal up to around 1,000 calories.  It turned out to be much harder than usual to swallow so I had to add a bunch of olive oil.

Anyway, I finally wised up.  The only reason not to get a PEG is because, who wants a tube in their belly?  I don’t, but it will be better for me than the way I eat now, and better for both of us because it will be so much easier to be away from home.  We can go on trips again 🙂

A PEG tube is a small plastic one through which I will be able to inject food and drink directly into my stomach.  The surgeon (who insists the procedure is not really surgery) snakes a camera and light down my throat into my stomach and uses the camera to maneuver the light into the center of the stomach, well away from other organs.  The light is visible through the belly wall so once it’s in position, he in essence stabs a little hole in its direction and inserts the plastic tube into the hole.  A few days later I can start injecting boluses of food down the tube.  “Gin and tonics, too, if you like” he said.

The risk of damage during the surgery is very low.  Infection is possible but unlikely.  I can shower and do anything else I want once I have the tube.  Because I will regain so much time that I now spend preparing food, eating and clearing up afterwards, I can start an exercise program again and begin regaining strength.

It’s a good decision.  Better if I’d made it a few months ago but I wasn’t ready then.

The only other thing I have to report are a couple of dreams.  The night before last I was playing on the floor with a composite of my grandkids.  The thing we were playing with had a tiny whistle that (s)he demonstrated.  We knew I couldn’t do it but we wanted me to try, so I put the whistle between my lips, pressed them together with my fingers and blew.  Air escaped but there was no whistling sound.  We smiled at each other.  It’s very cool that I know what’s going on with my body in my dreams.

Last night I was surprised to notice that I was replying to someone.  It was only a whisper but so encouraging.  Maybe I can do better than that, I thought.  I put my mind to it and rapidly regained normal speech.  That seems pretty unlikely now that I’m awake but it’s good to know my optimism remains deep rooted.

It should take only a few days to get used to the tube so I’m looking forward to seeing you all again soon.

Jan 23 – To my family

The surgery went well.  I’ll keep notes while I recover and send you an update in a week or so.

My ALS Adventure – December 2017

This month I decided I would definitely get a feeding tube installed.

The way some foods taste had changed.  I’d postponed giving up bagels until they became almost impossible to swallow because I enjoyed chewing them so much along with their taste.  Now I’d had to give up on lamb because it tasted gross and on red wine and dark beer because they tasted sour.  I would have had to give them up, anyway, because I could only swallow more viscous liquids.

Christmas presented some emotional challenges but I was still almost always happy.

December 12 – To my Tibetan doctor

My PEG tube consultation is on the 19th.  At the time we scheduled it I only wanted to ask questions and make sure I understood all the ramifications.  Now, I’m sure I should have it done, so we’ll schedule the procedure as soon as we can after the 19th.  It’s hard for us to go anywhere because of my eating and drinking difficulties, and they take up a lot of time every day, anyway.

Returning to the one-precious-pill-every-three-day routine went smoothly and was welcome because after sleeping an average of 11 hours a night, spending an hour to an hour and a half on each of three meals, and doing two hours of practice, there’s not much time left for other things.

My attempts to gain a few pounds weight in case of an everyday illness are not working.  I’m stable at 140 lbs despite an average of 2,500 calories daily and sometimes more.  Felicity is envious of this side effect of my ALS 🙂

I’m not aware of any changes in my body.  I don’t think anything is getting worse.  I did feel a couple of times that my tongue was ready to start regaining strength but there was no specific basis for the feeling.

I feel fairly tired by evening time but usually okay during the day.  I have 2 or maybe 3 hours in the afternoons when I can choose what to do.  The weather has been good most days so I’ve been working on renovating the summer kitchen, taking it slowly, not making myself tired.  Progress is slow but very satisfying.

December 20 – To my Tibetan doctor

The PEG tube consultation was helpful.  I’d already realized I should have it done but it was good to have the procedure explained and learn a bit more about living with one.  I’m having it done on January 23rd.

Now it’s scheduled, I realize I’d have been smarter to have had it done before.  Missing one of my three meals yesterday because of the appointment left me very tired, and it’s always hard (for which read, pretty much impossible) to drink enough because it takes so long and causes so much coughing.  I’m eager for an end to that!

My sleep has been a bit shorter the last few days, 8 or 9 hours, not 10 or more, and it has been interrupted more.  I don’t know why.  I feel it’s a transitory problem.  My gut felt a little odd for a couple of days when the sleeping change started.  I probably ate something that didn’t agree with me.  My gut feels okay again now.  I felt tired when I woke today but I’m fine now after lunch.

I forgot to mention that the way things taste has changed.  I assume that’s because my tongue shrank.  I’ve always loved red wine and dark beer but they both taste sour now.  I had to give them up a couple of months ago.  I gave up coffee, too, around that time because it just doesn’t feel right with thickener.  Savory foods still taste fine,  Chicken, turkey and to a lesser extent pork taste ok.  Lamb, which I used to love, tastes gross now and I haven’t tried beef for quite a while.  Pear smoothies are good.  Chocolate Ensure tastes good but gives me coughing fits.

December 31  – To my Tibetan doctor

I’ll start blogging about life with ALS in January, hoping it may be helpful to others.  I’ve noticed a few stages so far, each offering a somewhat different opportunity to train in equanimity.  Christmas included traditional foods that we only have at such times, which I remember as delicious, and which I can no longer eat.  I felt a little regret that I couldn’t have them this year but mostly I enjoyed memories of happy previous times with my family, and I enjoyed their delight in the foods now.

A bit more difficult was being in groups of friends and family chatting and joking.  I can have good conversations with one person at a time using a notebook but that really doesn’t work in a group.  It breaks up the flow.  So I felt isolated at times.

A benefit of travel is the way it highlights differences.  I realized that although the change is so slow I don’t notice it from day to day, swallowing has grown more difficult.  I have to get the viscosity of my pureed food just right.  My tongue is very weak but the greater difficulty seems to be in my throat.  It takes quite a few spoonfuls of food before I can get a flow going.  And I get acid reflux sometimes now which I never had before.

But there’s still no sign of weakness in other muscles and I’m looking forward to having enough free time again once the PEG tube is in so I can resume work on the cross-trainer.  I feel good but I am much less strong than I was.

February 11  – Another recent photo

Baby Eleanor again, this time with her sister wearing a colander hat while studying a picture of her uncle and one of her cousins.

My ALS Adventure – November 2017

After three months of taking a precious pill once every three days Dr.T had prescribed a program of three different medicines per day for two weeks after which I returned to a precious pill program.  I was providing her with more details of my symptoms during the transition.

I had transitioned to the recommended diet but realized this month that I wasn’t getting enough calories.  We still haven’t figured out why, but ALS patients need more calories.

Swallowing was growing more difficult, I was coughing a lot, and my discretionary time was greatly reduced for several reasons, in particular because eating was now such a slow process.  I was beginning to recognize that I would have to get a feeding tube installed.

At a seminar on ALS and similar diseases I recognized that Western medicine aims to kill things to effect a cure while Tibetan medicine aims to get the body back in balance so it can cure itself.

November 8 – To my Tibetan doctor

Today is my eighth day on the new medicine.  Details from my diary since I started them:

I felt fine all day the first day but slept poorly that night because my nose was plugged.  I can’t blow my nose now because my lips are too weak.  I had a slight pain in my belly when I woke which disappeared after breakfast.  I coughed a lot in the morning and my throat was sore (I think one of my Western meds had dissolved in my mouth) and I felt tired all day, probably because I’d slept poorly, but I felt okay by bedtime.

I slept well and felt fine for the next three days.  On the sixth day I slept poorly and my lips felt swollen when I woke.  They felt as if they were stuck together.  I coughed a lot all day and had low energy.  It was difficult to swallow saliva that night and I ended up sleeping on my side with my head raised several inches.  Much coughing that day, too.

I slept well last night in the same position and feel fine.  Felicity says my lips do still look swollen but maybe less so now.  I ‘m still having periodic coughing fits but less often today.  What seems to happen is, saliva builds up in my mouth, something happens (presumably it starts sliding into my throat), that alarms my throat and a violent coughing fit ensues.

Overall: My energy has continued to be good except for the two days when I slept poorly.  I’m guessing the problems sleeping were unrelated to the medicine.  My bowels had returned to normal some time before I started the new medicine.  The only change I’ve detected is that my cheeks have been getting caught between my teeth more often for quite a while.  It’s a slow weakening of the cheek muscles.  I might be slowly having a little more difficulty swallowing but I’m not sure.

I’m following the diet chart fairly well.  Carbs are difficult because oats, which would be best, are too fibrous and irritate my throat.  I mostly use white rice because it blends to a good consistency.  I have potato less often because it’s less versatile.  Pretty much all my meat is chicken.  I’m making more fruit smoothies.

I wondered why I had to eat so much just to maintain 140 lbs weight.  Felicity read a couple of days ago that ALS patients need substantially more calories and then we remembered being told at Johns Hopkins that I should eat 3,000 calories per day.

I had a few short spells of feeling a bit dispirited by the amount of time it takes now just to stay alive, two hours longer sleeping, three full meals per day that take about an hour and a half each, hor-mey and meds, and so on.  Having ALS isn’t interesting now, I thought, just inconvenient.  Then I realized this phase is a new opportunity to practice equanimity and I felt fine again.

November 9 – To my family

It’s about six weeks since my last update so it feels like time for an update even though I have no real news.

The Tibetan approach to medicine is slow-acting.  To over simplify, where Western medicine aims to kill whatever is causing the symptoms, the Tibetan approach  is to re-balance the body’s workings so it will heal itself.   My Tibetan doctor is super responsive.  I feel blessed.

The regimen I’m on is not expected to show even subtle signs of improvement for at least three months and I’ve now been on it for just about that time.  That means we should expect my symptoms to have worsened during the first three months of treatment.  The hope is they would start to improve sometime after that.

In fact they have worsened in the last three months, but despite my best efforts to keep track I don’t really know how much they’ve done so in the last three vs the last six.  The rate of worsening has definitely slowed, and I still have no noticeable problems anywhere other than in the muscles around my mouth and throat.  This may mean the Tibetan medicine is getting my body back to full health.

The main problems I experience now are, (1) my lips are weak so I have to press them closed with a napkin when I eat or drink, I dribble at times, and I can’t blow my nose vigorously, (2) my cheeks sag between my teeth and I can’t always avoid biting them, (3) my throat doesn’t swallow so well, it gets alarmed sometimes by the first signs of saliva or food coming its way and coughs violently, and I have to keep clearing my throat although I’m not sure why.

When we ordered an arm band for me about being an ALS patient I joked about having it say: “I make funny noises and dribble but I’m not dangerous”.  I’m a slow and noisy eater now but I’ll try not to be too bad at Thanksgiving.

Some foods and drinks taste different.  Sadly, all red wine tastes bitter.  I still have quite a bit left in the basement that I hope you’ll try.  I’ve no idea how much is still good to drink, but it’s okay in coq au vin.

It was easier in an odd way while my symptoms were growing noticeably worse because it was interesting figuring out how to do things in new ways.  A core aspect of Buddhist practice is training oneself in equanimity.  During the first stage when I was losing the ability to speak it was fairly easy to avoid having feelings of anger because it was a learning opportunity.

A few days ago, I started to feel frustrated because there’s been very little change to respond to for quite a while and the extra two hours I spend sleeping, the hour and a half or so every meal takes, the time I spend on the medical regime, and the two hours of Buddhist practice my teacher told me to do leave me much less time for things I choose to do.  Then I realized this is another opportunity to train myself out of responding to emotional scripts and into more perfect equanimity.

So, it continues to be good to be alive.

My latest project is renovation of the summer kitchen.  The posts at the back had rotted out and a couple of beams cracked as the back wall subsided.  I’m slowly jacking the structure up so it’s straight before I replace the footing and the rotted out parts of the posts and repair the cracked beams.  It’s interesting work, not very hard yet, and it’s going well.

November 11 – To my Tibetan doctor

I was very tired yesterday, which is unusual even after a precious pill, and my throat was extremely sore after I took the morning medicine.  I was producing huge amounts of slimy saliva and having frequent coughing fits all morning and into the afternoon.  I decided to skip the other meds yesterday and this morning’s dose so I’d have skipped a full day, and resume at lunch today.

I feel a bit tired this morning and my throat still feels sensitive but I no longer feel as if I’m getting a bug as I did yesterday.

The timing is unfortunate because we’re going to an ALS conference in Lehigh this morning where there will be a presentation about swallowing.

Felicity is concerned that my swollen lips could be a precursor to a new stage of weakening, similar to the way my swollen tongue was my first symptom of ALS.  I have an open mind — we’ll see what happens next.  My lips feel okay again although I’ve been having increasing trouble biting my cheeks and the inside of the front of my mouth.  If I had to guess, I’d say the ALS effects are continuing to increase but still at a much slower rate than before we began the Tibetan medicine.

November 16 – To my Tibetan doctor

I had never tracked calories I eat.  My metabolism is fast and I’ve always been quite active so I didn’t gain weight until I was over 50 when I was working very long hours at a desk.  Then I cut back on the quantity of food.  Looking back over what I’ve been eating in the last couple of months and having looked at a calorie counter I’m guessing I’ve been getting around 2,000 calories per day from three large bowls of different foods.

I started tracking calories in my health diary yesterday and chose what I ate so it would total around 3,000 calories.  I can do that every day by incorporating things like fish fingers and other fried foods which I’ve only eaten rarely in the past but maybe it would be ok if I also drink enough fruit smoothies and so forth.  It takes a long time to eat one of those bowls of food so it doesn’t seem feasible to get 3,000 calories from a fully healthy diet.  I’ll experiment.

I think swallowing is slowly growing more difficult and Felicity is concerned that I may aspirate food into my lungs and get pneumonia so we’re scheduling to learn more about PEG (feeding) tubes.  I don’t want to have one, of course, but it may become essential and it would mean I could pack enough calories directly into my stomach and eat just enough at meal times so I could finish in the same time as Felicity or guests.  It would also make it more practical to be away from home.

No other changes or news.  I feel good, just wish the extra sleeping, longer mealtimes and etc left me more time for other things.

November 18 – To my Tibetan doctor

The coughing fits lasted only a few days.  I’m okay again now.  I think what happens is, because my entire mouth, throat and related parts are weak, any additional difficulty has exaggerated results.  This morning, for example, it was unusually hard to eat breakfast because my nose was plugged.  I can’t clear it in the usual way because my weak lips mean I can’t blow my nose with enough pressure.  I just have to be patient and wait until I’ve been vertical for long enough.

Felicity asked me to tell you that I sleep much more calmly these days.  I’m only aware of the occasions when I wake and my throat, irritated by saliva, makes growling noises that I try to keep as quiet as possible.  She sleeps through those 🙂

You asked how I feel after a day of higher calorie meals.  Better, in a word.  Responding to your concern about fish fingers and whatnot, I’ve always eaten a pretty healthy diet and I’m not going to start consuming a lot of unhealthy food now.

You also asked about my lungs.  They’re still working fine as far as I can tell but there are a few times when in-breaths stop before my lungs are full.  I think that’s related to temporary problems in my throat and/or nose but I’m being watchful.  I’ve never felt short of breath.

We have an appointment a month from now with the surgeon who will install my PEG tune if and when.  The little research I’ve done so far makes me think it probably would be better on balance to get one installed.

But that reminds me…  The experts we met at the Lehigh conference do not expect to reverse the symptoms of ALS, only slow or ideally stop its progress.  I asked about replacing dead motor neurons with stem cells and was told that would not be effective because the nerve from motor neuron to muscle will also have died and cannot be regenerated.  Since the body is constantly regenerating (most of?) its component parts I don’t see why that would be true.

The more encouraging thing I was told is, not all ALS patients with bulbar onset progress to other parts of the body and the longer there is no progression, the better the odds there never will be.  Overall, my conclusion is, there’s very little understanding of ALS so far by Western medicine.