My ALS Adventure – October 2017

Although my mouth and throat muscles were continuing to weaken, the progression had slowed.  My other muscles still seemed okay but they, too, were weaker.  I was having very little difficulty accepting my new limitations.

I continued to feel I was in an equanimity training program.  I was very lucky, though, to be experiencing no pain.  Suffering is something we create.  Pain is something that happens to us.  We can train ourselves not to create fear but very few of us can transcend pain.

October 1 – To my Tibetan doctor

I recognized quite by accident during a break that I can no longer move my jaw from side to side.  I had suspected the area around my lips was weakening, making it harder to keep food in my mouth even with a napkin pressed against my lips, but I wasn’t sure.  I was also unsure whether drinking has grown harder — needing to take smaller sips and hold them in my mouth longer before swallowing.

Then I noticed toward the end of my first ten hours of practice yesterday (Felicity is away from home for a few days so I can do more) that yawning is a problem because my cheeks now sink in between my molars which means I must be very careful when I close my mouth.  I’d gotten used to biting my lips closer to the front of my mouth.

So I now recognize that all my facial, mouth and throat muscles have continued to grow weaker although the rate of decline has slowed.  It’s impossible to gauge the rate of change, or changes in the rate, since I began having to puree all my food.  Because I’m not making enough use of the muscles, it’s hard to detect changes in their functioning.

The muscles everywhere else in my body seem to be okay but they are weaker.  I started doing 12 minutes on the cross-trainer on the days when I don’t take the precious pill, not pushing hard but pushing enough so the muscles do some work.  It feels good, but it’s far from enough to rebuild the muscles’ strength.  They would be weakening if the ALS has spread to other muscles, but they would also be weakening because I haven’t been using them so much.

I continue to be happy 🙂

That’s all I can think of to tell you about my health.  I believe the way ALS progresses when untreated varies from person to person and I imagine the rate of improvement in Dr Lobsang Dhondup’s patients also varies so I won’t ask what to expect in my case.  I’ll just do my best to keep reporting what happens.

About nutrition:  I’m maintaining 140 lbs weight and I feel okay at that.  I haven’t been able to increase it.  I’ve pretty much completed the transition to alkalizing foods using this chart when I have questions  I love pork and haven’t yet totally given it up but almost all my meat is now chicken and a little turkey.  My evening meal varies quite a bit.  Scrambled eggs, a chicken patty and rice all blended together are my staple for breakfast.  I usually have lentils and rice with blue cheese dressing for lunch.  I supplement with Ensure during the day.

October 9 – To my Tibetan doctor

I recognized again this morning that I really know nothing for sure about how my sickness is progressing.  Most days all seems the same as I think it was a month ago or more.  Occasionally, I notice there has been a decline, like the inability to move my jaw sideways, but I don’t know how long ago that happened.  This morning and a couple of days ago I have the sense that I may be getting better.  But as I said, whatever changes are taking place are too slow acting to notice.

I’m fine with not knowing what’s going on.  I’m totally confident that I’m doing what’s best to do and it’s all good training to grow more patient.  I’ve had no difficulty so far accepting the limitations — but I’m very lucky because there’s no pain.

Note: Feb 3, 2018 – I have no limitation at all with Eleanor – neither of us can speak 🙂

October 30 – To my Tibetan doctor

I’m feeling good today.  I spent the morning practicing and reading and this afternoon I enjoyed working (not very strenuously) on renovating the old summer kitchen that came with this house.  I was feeling a bit grumpy yesterday, not tired, just lower than usual energy.  The day before, I was feeling good.  I can’t identify a reason for the differences.  I almost always do feel good.  I’m getting used to being able to do less because eating takes so much longer now and I’m doing more practice.  Equanimity.


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