Living with ALS is the same as it was before in that I can’t know what will come next.
This month I noticed twitching in my right side. Since I have ALS, that probably means the motor neurons that control the muscles there are dying. My mouth and throat muscles have continued to weaken for almost two years but all the others seemed okay. That seems to have changed.
The most likely future suggested by the twitching is I will lose the use of my legs and most of what I can do with my arms during the next year although other alternatives are also possible I might regain some vigor by working outside this summer, or I might stay as I am for quite a while.
The only thing I can be sure of is my body will shut down sometime. I feel blessed to be alive right now no matter what my future. I’m so lucky to have lived long enough to reach that degree of wisdom and to still have the potential to wake up more completely.
May 11 – to my family
There’s been no great change in my health since the last time I wrote but there are a few things I’m tracking.
The Tibetan Kundey medicine seems to be reducing my mucus production, I’ve started applying a nasal spray before going to bed and I’ve had less nostril blockage while trying to sleep. I need to see this go on longer before I declare victory, of course.
I’ve also been coughing less often although I do still cough more than in the past.
I had a couple more incidents late in the day when I suddenly began coughing violently and had great trouble drawing breath. It didn’t feel life-threatening, just something I must quickly overcome. The bad part was Felicity’s distress because I couldn’t explain that I felt sure it was a transitory problem. I imagine it resulted from weakness of my epiglottis letting saliva drain toward my lungs instead of my stomach.
I haven’t yet overcome excess salivation. Atropine drops seemed to increase salivation so I went back to the pill three times a day. Most recently I’ve continued with the pill and applied atropine before going to bed. That seems to be helping. I haven’t yet figured out what triggers excess salivation. I get spells of high production while the rest of the time it’s not a problem.
Those problems and the cheek biting don’t bother me much because I’m used to them now. I don’t like having such low energy, though. Felicity asked if I think being 74 could be factor. Of course not 😉
I haven’t felt like exercising on the cross-trainer recently but I spent most of the day a couple of days ago replacing the anti-rabbit fence around the vegetable garden. That felt better than being on the cross-trainer, not boring. My next project is to repair the bottom of the back wall of the summer kitchen.
My stomach was a bit disturbed while I was doing the fencing because I’d experimented with different foods the two previous evenings. Felicity had bought salmon and I tried some along with my usual three kinds of veggies. That had no noticeable effect so the next night I had salmon again but with broccoli and potato since I’d run out of my usual veggies. I also added two scrambled eggs because I feel I’m not getting enough protein. Oh, and both evenings I had a beer, for hydration, you know.
My gut continued to feel slightly distressed so I’ve eaten only formula the last three days but with the addition of a cantaloupe and yogurt smoothie in the mornings and more water. I’ll go back to veggies instead of formula this evening. I would never have given any of this any thought in the past. It’s impossible to know how much attention to pay now.
It’s worth paying some attention. Because of the discomfort and extra tiredness after working on the fencing I finally thought to look at where casein and soy, the primary ingredients of my formula, lie on the acid/alkali spectrum. They’re both relatively acid-producing which my Tibetan doctor says I should minimize. So I’ll start cautiously replacing more of the formula with foods that are more suitable.
I’ve been accepted into the “ALS At Home” study to assess whether ALS patients can monitor their vitals themselves and send the results to their doctor. That means I’ll be able to monitor my lung capacity and other things. I’m eager for that because I’ll be able to know for sure if there are any trends.
I’ve been doing a lot of reading while Felicity is away on her painting trip in France and doing some opera watching. Coloratura soprano Kathleen Kim is spectacular and Sonya Yoncheva’s voice is so beautiful. But try watching Yoncheva perform Casta Diva on YouTube then watch Callas who somehow goes beyond beauty and raises goose bumps.
Tomorrow I’ll drive to Hampshire College to take videos of Doma presenting her thesis to the Computer Science folks on Wednesday and the Natural Science folks on Thursday. She’ll be presenting for parents of this year’s graduates on the day before commencement . Very cool!
May 26 – to my family
The end of pollen season along with the Tibetan anti-mucus medicine brought me relief from the blocked nose that was making it hard to get to sleep, and I have not had any more coughing fits that make it hard to breathe.
The ALS At Home monitoring equipment came a couple of days ago and I’ll learn how to use it this weekend. I have to pass an online test before I can actually use it and at least some of the equipment uploads the results so I’m not sure if I’ll be able to access them but it’s a worthwhile program, anyway.
I haven’t yet changed my diet because I’ve been away from home quite a bit going to Doma’s graduation and helping her move out of college.
The negative news is I noticed twitching in my right bicep a couple of nights ago and again last night and there’s twitching in my right thigh this morning. That means the associated motor neurons are dying. The ALS is spreading. Felicity said she noticed twitching in my right shoulder a couple of months ago but hadn’t seen it since.
I’ve been feeling unusually tired for a while. As I mentioned, I stopped exercising on the cross trainer. I thought it might be a combination of age — I should expect to have less energy now I’m 74 — along with the wasting effect of getting little exercise over winter. It looks like the greater factor is progression of the disease.
I’ll keep you posted of course and give a bit more thought to future plans. Before I noticed the twitching I’d suggested we might take a road trip in the van and take the rest of Doma’s stuff to her in California where she will be living with David and Ilana before finding rooms near wherever her job turns out to be. I’m going for three weeks of practice with my Tibetan Buddhist teacher in July so we should probably take our road trip soon after that.
Please try hard not to be upset by my news. We can’t know how long I will remain healthy enough to continue a relatively normal life, but we never could know that, anyway. None of us can know our future.
I’ll continue doing things I enjoy and adapt to changing circumstances. I’ll do less of what requires strength and more of other things. In particular, we intend to spend more time with you 🙂
Speaking of things I enjoy doing, here’s how the summer kitchen is looking now. Do you remember how it looked originally? When it stops raining I’ll finish that wall and start on the floor.