My ALS Adventure – September 2017

This month was uneventful.  Our main focus was on dietary changes that are an important aspect of Tibetan medicine.

September 23 – To my family

It’s a while since I sent my last update because I’ve been hoping to tell you something definite.  I’ve been keeping detailed notes for a little over 3 weeks about what I eat and do and how I feel.  They will reveal in the end how I’m progressing, but they haven’t yet which might mean my symptoms have stopped getting worse, or at least that they are getting worse more slowly.

Part of the difficulty is the dietary aspect of my Tibetan medicine treatment.  The doctor first wanted to make sure my body tolerates the “precious pills” because they are powerful.  At that time she gave us only a little guidance about foods that are good for me and ones to avoid.  There were no ill effects from the first pills.  They make me tired but that’s expected because they are getting my body to work on healing itself.  So she sent more pills and emailed several academic papers about Tibetan medicine.

There’s not much published research about Tibetan medicine and what there is focuses mostly on treatment of cancer or the results of testing to see if any of the ingredients are harmful.  They aren’t.  My doctor’s mentor in CA who has been treating ALS patients successfully hasn’t yet published anything about it, and my own doctor’s experience is chiefly with cancer patients.

What the papers did make us realize, though, is that diet is a big part of the treatment, which is good because it’s something we can control.  The papers didn’t give specifics, though.  I asked the doctor and she sent us quite a bit of guidance, but of course we now have more questions.

The overall dietary theme seems to be to eat mostly foods that have an alkalizing effect and avoid ones that acidify.  That’s not as straightforward as it sounds, though, because lemon, for example, which tastes acid, is an alkalizer.  And like anything else, it takes a while to make the adjustment.  I had, for example, been having a can of corned beef hash for lunch quite often as part of the effort to keep my weight at 140 or above but beef is acidifying so I cut that out and lost 5 lbs in a week.  I’m back to 140 now and still experimenting to find things I can eat that are okay with the treatment and also taste okay.

I feel happy but this is an ongoing process of adjusting to negative changes so I’m probably creating suffering for myself that I’m not noticing.  I’m not worried about what might happen next, I just get frustrated by new difficulties.  Nothing new there, right?  We all experience that.

I feel frustrated sometimes because I have less discretionary time.  Eating is a slow process, there’s quite a bit of medicine taking and treatment stuff to do, and I committed to the two meditation sessions of an hour each every day.  All those things feel productive most of the time, but they do end up taking a lot of time, so I have less time for other things.

The other challenge is I’m losing muscle mass because I have to avoid tiring myself so as not to interfere with the Tibetan treatment which makes me tired, anyway, so I’m getting much less physical exercise than usual.  I’ve been doing more recently, aiming for a better balance.

I’ve learned how to act in shops so I can communicate without much difficulty and in a friendly way.  Being in a group is disappointing because I can’t really participate.  I can Skype pretty effectively by holding notes up to the camera.  Emailing and participating via social media is good because that works just the way it always has.

Now it’s time for lunch – lentils and rice today – followed by some gentle exercise then clearing up my tarpaulin tractor shed that was destroyed by the amazing windstorm.

Reply from a friend

It doesn’t surprise me that diet plays a big role in the function of Tibetan medicine.  When I was studying Chinese medicine so much of what we were looking at was diet-related.  It was part and parcel of the use of medicinal herbs, etc.  Many of the Chinese stews and soups, for instance, had medicinal herbs in them, and food was related to season, the presence of certain “humors” in certain places/times, geography, etc.  It formed one holistic system, of which the human body was microcosm.

In Chinese medicine, palsies are either related to wind or phlegm, which type you suffer from being a combination of the two (shaking being more wind, and blockage being more phlegm).  The combo of wind/phlegm can be particularly tricky since usually those two forces are opposed to one another (movement and blockage).  I don’t know if any of this is resonant with the Tibetan forms of diagnosis and treatment, but the broad outline of what you describe sounds very familiar to me.


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