My ALS Adventure – July 2017

This month is when we realized that while ALS is my indicated diagnosis, ALS is less a definitively diagnosable disease than a label applied to a varying cluster of symptoms.

Re-reading what follows, I still believe this is true: “You can have a powerful influence over your health if you learn how to purposefully relax your mind and body” but I’m skeptical that we can “call on the memory of wellness and bring the state forth“.

For the benefit of other ALS patients, I’d like to be able to report sometime in the future that as a result of Tibetan medicine, nutrition changes and living in neither hope nor fear, my body has restored itself to full health.  There would then be a program others could follow.

But I’ll report whatever happens.  Meantime, I bless my parents and the culture in which I was raised for this:  “I’m very lucky to have read so many adventure books as a child because they accustomed me to experience life that way.  Unexpected things happen on an adventure.  You expect that and enjoy figuring out how to respond.”

July 17 – to my family

The brain MRI I had on May 18 that was sent to Johns Hopkins has been reviewed by a pair of experts.  I’ve asked my neurologist to explain it but he is away right now.

What we think the experts’ report says is there is no indication of ALS at this time.  There are:  “mild T2/FLAIT hyperintensities in the periventricular regions, which are nonspecific, however likely represent small vessel ischemic changes in a patient of this age.”

The report concludes:  “no focal signal abnormality in the brain parenchyma other than mild patchy areas of increased signal in the periventricular region compatible with chronic small vessel ischemia.”

Ischemia constricts blood supply so perhaps this means the motor neurons that send signals to my mouth muscles are not being actively killed by anything but are dying for lack of blood supply?  The process appears to be irreversible.  I don’t know if it is likely to occur also in other areas of my brain.

So the report seems to suggest I have Progressive Bulbar Palsy (PBP), not ALS.  Life expectancy for PBP patients is only 1-3 years because as swallowing grows increasingly problematic, food gets in the lungs, infection sets in, and the patient dies of pneumonia.

However…  If we understand this correctly, and if the diagnosis is now correct, presumably I could have a feeding tube surgically implanted to avert that problem.  I haven’t researched them but I understand that a fully active life is possible with them.

We will do some research into all those terms, which Felicity is better able to understand because of her training, but we’d have to do far too much to have any hope of real understanding.  Our focus is on getting a definitive diagnosis because that would tell us what, if anything, would be productive to do, and most of our effort is on dealing with the practical effects of losing my mouth muscles.

As I’ve said before, I reckon I’m very lucky to have read so many adventure books as a child because they accustomed me to experience life that way.  Unexpected things happen on an adventure.  You expect that and enjoy figuring out how to respond.

Being unable to speak is not a single experience, for example.  One on one conversation is entirely different from chat in a group.  I can manage the former but not yet the latter.  And there are, I’m recognizing, many aspects to food texture and configuration that impact swallowing.  Chopped tomato is great because it doesn’t stick to the roof of my mouth.  Black coffee is very hard to swallow and while coffee with thickener is more practical and it still tastes right, it doesn’t feel like coffee.

The unrelated bug that was making us both tired has finally gone away so I’ve started daily exercise on the cross-trainer again and that feels very positive.

Jul 24, 2017 – To my family

My neurologist’s opinion is that I have ALS presenting itself first as bulbar palsy.  He views Progressive Bulbar Palsy (PBP) as a subset of ALS.

What is becoming evident to Felicity and me is that very little is actually known about ALS, or PBP, or autoimmune disease in general.

[Jan 27, 2018 –  When I wrote this I thought ALS is an autoimmune disease.  It isn’t.  WebMD clarifies the difference: “MS is an autoimmune disease that causes your body to attack itself, ALS, also called Lou Gehrig’s disease, is a nervous system disorder that wears away nerve cells in your brain and spinal cord.”  What follows is not wrong but it is inapplicable to my condition.]

What is autoimmune disease?  Our bodies have specialized cells whose purpose is to recognize and kill cells that don’t belong in us, ones we think of as infections.  If I understand correctly, the defensive cells first recognize newly arrived ones that may be harmful, then program themselves to recognize that specific kind of foreign cell more quickly.  Something goes wrong in the case of autoimmune disease — the defensive cells mistakenly start recognizing cells that are part of one’s healthy body as if they were foreign.

The mistake may have originated in my case when I experienced the moth allergy.  But that is unknowable because the origin of autoimmune diseases is unknown.  And there is no way to diagnose ALS or PBP.  Other things, e.g., myesthenia gravis can be ruled out, but definite evidence of ALS is only available by means of autopsy when Motor Neuron cells can be examined.  I’m not certain even that is definitive, though, because I’ve found no information so far on whether it’s apparent if the MN cells died before the body overall died.  It’s definitely not known what triggers the killing of the MN cells.

About the only thing we’re sure of is that whatever disease I have is not hereditary.  That’s a relief because a small percentage of ALS patients do have a genetic variation that is associated with the disease.

Turning to the current state of my health…  I’m still fine everywhere except for my mouth and throat and I restarted work on the cross-trainer with good results.  On rare occasions I can form sounds that are recognizable as words but really I can no longer speak and swallowing continues to grow more difficult.  I’m deeply grateful that Felicity works so hard and is so good at finding new ways to prepare food to minimize my difficulty.  Puree with the right viscosity always works.  Anything scratchy is a problem because it gets stuck in my throat and triggers explosive coughing.  Drinking can have the same effect.

Moving on to something I found yesterday that may explain why I’m doing well overall…  There’s a lot of interesting information there, including this:  “You can have a powerful influence over your health if you learn how to purposefully relax your mind and body, and to use your own personal beliefs – whatever they may be – to help reduce unpleasant symptoms and enjoy good health. We all have patterns in our brain of the memory of what it is like to be well. We’re wired for these memories. We can use our beliefs to call on the memory of wellness and bring the state forth. Our thoughts and feelings and beliefs are actually patterns of brain cells, a physical phenomenon. It’s possible to use brain cell patterns to promote health. This is a scientifically proven tool, shown in more than 200 studies to be effective. The scientific evidence is here.”

So my Tibetan Buddhist Practice, which is based on visualization and other techniques mentioned in that article, and the understanding of existence I’ve arrived at based on those teachings look to have been perfect preparation for the negative aspects of my current situation.

It is in fact very interesting to see how things are changing.  I can still have deep conversations one on one, for example, but I haven’t yet figured out how to participate in fast moving group conversations.  I’ve been happy to experience joyful experiences but I’ve been suppressing my awareness of sadness and that’s a mistake because it is a real experience.

In conclusion:  We don’t really know much more about what’s going wrong in my body than we knew a year ago, it does seem I’m doing the right things about it, and there’s a not insignificant chance I could remain healthy overall for quite a while.  I almost certainly will need to have a feeding tube implanted, though.

Jul 24 – From Felicity

Just one slight addition. Dr Chaudhry explained that bulbar palsy is a description of a specific symptom, the way Martin’s ALS has presented.  ALS is the description of the disease process itself.

PBP is the failure of the muscles of the tongue etc that are controlled by nerves coming from a specific part of the lower brain.  It is the effect ALS is having in this case, as opposed to affecting the nerves that control limb movement for example.

As Martin says, we are hoping his will be one of the cases that never progress past that stage, or at least the progression will be slow enough that he dies of old age first.  If not, we will deal with whatever comes as we always have, a new challenge to overcome with love and humor along the way

P.S. Our California trip was fun except that Dad’s box of puréed dinner stowed next to his computer tablet caused great consternation at the security check at Oakland airport.  It had to be examined by many serious faced officials and needed much explaining on my part before it was deemed safe to travel.

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