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.

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