My ALS Adventure – December 2017

This month I decided I would definitely get a feeding tube installed.

The way some foods taste had changed.  I’d postponed giving up bagels until they became almost impossible to swallow because I enjoyed chewing them so much along with their taste.  Now I’d had to give up on lamb because it tasted gross and on red wine and dark beer because they tasted sour.  I would have had to give them up, anyway, because I could only swallow more viscous liquids.

Christmas presented some emotional challenges but I was still almost always happy.

December 12 – To my Tibetan doctor

My PEG tube consultation is on the 19th.  At the time we scheduled it I only wanted to ask questions and make sure I understood all the ramifications.  Now, I’m sure I should have it done, so we’ll schedule the procedure as soon as we can after the 19th.  It’s hard for us to go anywhere because of my eating and drinking difficulties, and they take up a lot of time every day, anyway.

Returning to the one-precious-pill-every-three-day routine went smoothly and was welcome because after sleeping an average of 11 hours a night, spending an hour to an hour and a half on each of three meals, and doing two hours of practice, there’s not much time left for other things.

My attempts to gain a few pounds weight in case of an everyday illness are not working.  I’m stable at 140 lbs despite an average of 2,500 calories daily and sometimes more.  Felicity is envious of this side effect of my ALS 🙂

I’m not aware of any changes in my body.  I don’t think anything is getting worse.  I did feel a couple of times that my tongue was ready to start regaining strength but there was no specific basis for the feeling.

I feel fairly tired by evening time but usually okay during the day.  I have 2 or maybe 3 hours in the afternoons when I can choose what to do.  The weather has been good most days so I’ve been working on renovating the summer kitchen, taking it slowly, not making myself tired.  Progress is slow but very satisfying.

December 20 – To my Tibetan doctor

The PEG tube consultation was helpful.  I’d already realized I should have it done but it was good to have the procedure explained and learn a bit more about living with one.  I’m having it done on January 23rd.

Now it’s scheduled, I realize I’d have been smarter to have had it done before.  Missing one of my three meals yesterday because of the appointment left me very tired, and it’s always hard (for which read, pretty much impossible) to drink enough because it takes so long and causes so much coughing.  I’m eager for an end to that!

My sleep has been a bit shorter the last few days, 8 or 9 hours, not 10 or more, and it has been interrupted more.  I don’t know why.  I feel it’s a transitory problem.  My gut felt a little odd for a couple of days when the sleeping change started.  I probably ate something that didn’t agree with me.  My gut feels okay again now.  I felt tired when I woke today but I’m fine now after lunch.

I forgot to mention that the way things taste has changed.  I assume that’s because my tongue shrank.  I’ve always loved red wine and dark beer but they both taste sour now.  I had to give them up a couple of months ago.  I gave up coffee, too, around that time because it just doesn’t feel right with thickener.  Savory foods still taste fine,  Chicken, turkey and to a lesser extent pork taste ok.  Lamb, which I used to love, tastes gross now and I haven’t tried beef for quite a while.  Pear smoothies are good.  Chocolate Ensure tastes good but gives me coughing fits.

December 31  – To my Tibetan doctor

I’ll start blogging about life with ALS in January, hoping it may be helpful to others.  I’ve noticed a few stages so far, each offering a somewhat different opportunity to train in equanimity.  Christmas included traditional foods that we only have at such times, which I remember as delicious, and which I can no longer eat.  I felt a little regret that I couldn’t have them this year but mostly I enjoyed memories of happy previous times with my family, and I enjoyed their delight in the foods now.

A bit more difficult was being in groups of friends and family chatting and joking.  I can have good conversations with one person at a time using a notebook but that really doesn’t work in a group.  It breaks up the flow.  So I felt isolated at times.

A benefit of travel is the way it highlights differences.  I realized that although the change is so slow I don’t notice it from day to day, swallowing has grown more difficult.  I have to get the viscosity of my pureed food just right.  My tongue is very weak but the greater difficulty seems to be in my throat.  It takes quite a few spoonfuls of food before I can get a flow going.  And I get acid reflux sometimes now which I never had before.

But there’s still no sign of weakness in other muscles and I’m looking forward to having enough free time again once the PEG tube is in so I can resume work on the cross-trainer.  I feel good but I am much less strong than I was.

February 11  – Another recent photo

Baby Eleanor again, this time with her sister wearing a colander hat while studying a picture of her uncle and one of her cousins.

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