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  One of her colleagues will review some recent unpublished studies to see if there is convincing evidence that it’s specifically helpful for ALS.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.

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