My ALS Adventure – April 2018

I had a disturbing incident, upgraded my text-to-speech technology and began taking medicine to reduce the mucus that blocks my nose and triggers coughing.

April 7 – to my family

I try to give an accurate picture in my updates of what’s going on physically and how I’m responding so I’ll describe an incident yesterday.

The day before, I’d spent a couple of late morning hours cutting up fallen trees and carrying the wood to the woodpile.  I was very pleased that I had no acid reflux because even though I squat as much as I remember to do, there was a lot of bending to pick up the wood. I think it was okay because I didn’t start until three hours after eating.  I was disappointed, though, that my energy was lower than it was last Fall.

So, instead of my usual veggies for dinner that night I decided to puree some of the fragrant coq au vin Felicity had made, and complement that with half an avocado.  I know my soy-casein formula is nutritious but it just doesn’t feel that way.  I feel as if I’m on a diet of mac and cheese, hamburgers and fries — as if it’s keeping me alive but really isn’t good for me.  I had an urge for protein in a familiar form.

Next morning, yesterday morning that is, I had my usual 2 containers of formula then read for a bit.  I usually read for at least an hour after each meal but I wanted to check emails and the news so I went to my computer after only about half an hour.

Suddenly, I had a powerful burst of acid reflux.  There was a lot of it, it tasted very nasty and my throat refused to risk inhaling any of it into my lungs.  I was gasping, making horrendous gasping coughing noises, fighting for breath.  It felt like being under water.  I managed to force enough shallow in-breaths to stay upright, I did not vomit as I at first thought I might, and after a while my breathing returned to normal.  My stomach felt disturbed all the rest of the day and to a lesser extent through last night and into this morning.  I had no more food yesterday and nothing for breakfast today except water.  I felt like having coffee late morning today, I had a container of formula around noon, another one mid-afternoon and I’m about to have a third one now.  I feel  normal again 🙂

I think what happened had two causes.  Bending forward while at my computer compressed my stomach too soon over I’d ingested quite a large amount of formula, and that triggered the reflux.  The reflux was so acid and my stomach was disturbed because it no longer knows how to digest coq au vin.

It was scary for Felicity because I couldn’t write what was going on during the time I could hardly breathe, and I couldn’t explain it until I’d had enough time afterwards to think it through.  I’m pleased to report that I didn’t panic.

I’m telling you about this to give you confidence that my usual posts about how everything is pretty much okay are the whole truth.  It will also be part of my update on my website next month for the same reason and to say once again that while ALS is not an adventure I’d have chosen, it’s one I can’t avoid and, like all other adventures, the best way to experience it is as a learning opportunity.

April 15 – to my family

We went to Johns Hopkins on Tuesday to check out products for people who can’t speak.  

We started with a contemporary version of an Etch-a-Sketch because writing on a notepad works well for me but I didn’t like its fat stylus.  Writing will likely remain the fastest, easiest method for me, but my handwriting isn’t always clear so it will be better for others if I type more.

Next I tried an iPad and an iPad mini with Proloquo4tex software.  I liked the iPad mini and Proloquo is much better than the free software I have on my iPhone.  It will take some getting used to but it will be worthwhile.  I also tried some other text-to-speech apps that aren’t as good.

The specific problem an iPad and Proloquo will solve is emergency calling.  Right now I have no way to call an ambulance for myself while Felicity is away, or one for her while we’re both here.  With an iPad I could type what I want to say and have it spoken into my iPhone.  Maybe I could even learn to type fast enough for group conversations which I can’t do with my tiny iPhone.

We also asked a nurse about my reflux and blocked nostrils.  The reflux has pretty much only happened after I bent forward compressing my stomach too soon after eating.  She said I should sit quietly for an hour after eating, which I almost always do already.  She also suggested over-the-counter medicines that combat acid reflux but I believe my problem is just because all the food in my stomach now is liquid.

She had nothing to suggest about my blocked nose but did offer to retest my lung capacity.  I was happy about that, and pleased with the result.  The normal range with the instrument she uses is 80-100.  My score was 84 when I was diagnosed with ALS a year ago.  When it was checked a couple of months ago it was 72.  Now it is 74 and I felt I could have taken a deeper breath.

On Thursday I had my teeth cleaned.  I was dreading it because my teeth are very sensitive and I now produce so much saliva.  Well, my teeth are in better shape now I’m not eating by mouth.  There was much less plaque than usual and it was much less tightly attached to my teeth.  The experience was almost painless!

What else?  I’ve been eating just formula and not exercising since the coq au vin scare but my stomach has felt back to normal for a while so I restarted eating pureed veggies for dinner two nights ago.  I will restart exercise today.  I did some chain-sawing yesterday afternoon.

My main difficulty right now is blocked nostrils and I’m trying a spray for that.  Difficult breathing has made it hard to get to sleep for quite a while and more recently I’ve been having coughing fits that I’m almost certain result from post-nasal drip.  The dental hygienist said “everybody is getting that now because of the pollen”.

I don’t have much energy or strength these days but as I’ve said before, I’m expecting both to improve as I do physical work outside again.  I suspect my mostly-formula diet is also a factor.  I’ll keep you posted 🙂

April 16 – to my family

I tried mom’s CPAP last night. My nostrils were so plugged it could not push air through. My Tibetan doctor is sending meds that counter mucus. Maybe that will help.

April 16 – a reply

I get that with the CPAP too, but after a bit the air finds a way. Either way, you’d be prescribed a small mask that goes over nose and mouth probably, so it wouldn’t matter.

April 25 – to my Tibetan doctor

I haven’t had a recurrence of reflux since I last emailed you.  I think there’s less mucus since I started taking the Kundey — I do put some on my tongue every time.  I think my nose is less prone to blockage.  I feel like an alchemist grinding my various medicines each morning 🙂

Because my bulbar-related symptoms vary from day to day it’s hard to discern trends.  I’ve had a couple more coughing fits where I had great difficulty drawing breath.  They occurred late in the day and I think they were triggered by a problem swallowing saliva but I’m not really sure.  I have spells a few times each day where I produce great amounts of saliva for a while and I’m not sure if that’s getting worse.  I haven’t figured out what triggers them except that I always get one when I first go to bed.

I’ve often been more tired recently, which might be pollen allergy.  I stopped exercising for about a week but restarted yesterday.  I’m careful not to stress my body with too much exercise.  I enjoyed mowing for the first time a couple of days ago.

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