Thursday, 11 December 2014


One of the toughest things about ALS is watching those around me die, and wondering when it will be my turn. It's terrifying to watch a strong man wither in the space of months, to see a woman lose her ability to walk, then talk, then breathe, all in a couple of years. Then I begin to ponder my own end of days. In the beginning, when ALS was mine and mine alone, much of this had little impact on me. As time as gone by, as I have met other PALS, as I have seen those in my own group weaken and die, it has become much more impactful, much more real.

I have a small pharmacy on my bedside. Of the dozen or so medications, I only take six on a regular basis. Oddly enough, four of these are directly related to my heart disease. I wonder at the irony of taking medication to stop me from having a heart attack, all the while dying from ALS. The intent, I suppose, it to allow me to live as full a life as possible until I can live no more. I wonder on a regular basis what might happen if I stopped taking my heart medication. I still take it; I guess I am afraid to find out.

Of the remaining medications, one is for depression. It actually serves two purposes; the first is to manage the Frontal Temporal Dysfunction which is a part of my ALS journey. This is the crying, the aphasia, the confusion that is caused as the neurons die in my brain. It happens to about half of PALS. It also reduces the likelihood of true depression, the impact of knowing what I have to look forward too. Suicide becomes less likely thanks to my "happy pill".

The other is an anti-coagulant to deal with the Deep Vein Thrombosis as a result of life in a wheelchair with no muscular activity in my legs. The medical team is worried that a blood clot might form in my leg, break off and travel to my heart or lungs, then kill me. I don't see the problem with this but they are insistent I take the pills. So I do.

I also have my friend Zopiclone, the one who hits me like a right hook from Mike Tyson when I need some help getting to sleep. Zopiclone is a depressant; Efexor is an anti-depressant. I find myself in that all too common position of taking one that offsets the other. The only real issue is that I can't, or rather, shouldn't drink alcohol when taking the Zopiclone. I try not to take it very often. In fact it loses its effectiveness if you take it regularly, like getting used to Mike Tyson punching you in the head. At least it doesn't bite my ear off.

The rest of the pills are primarily for the aches and pains that come and go with ALS. I suffer almost constantly from pain in one muscle or the others, low grade pain that passes as the day goes by, or moves to somewhere else. Percocet, Naproxin, and all the others simply wait there, silent, wondering why I don't use them more often. The truth is that the pain just isn't that bad most of the time. I'll live.

With this wonderful pharmacy on hand, I will have no shortage of tools when the day comes and I say "To hell with this". All I have to do is get the mix and dosage right, and make sure my last bit of scotch has the appropriate effect. After all, that's one thing you really don't want to screw up; a good glass of scotch.


  1. If Diana Huberty can last 29 years and ongoing--why can't you and I?

    1. It's all about the progression rate. Plus I don't want any mechanical intervention.

    2. I don't know how long Diane has been tetraplegic, but according to her listing in she is tetraplegic now. Re mechanical ventilation--I find its better than Atavan...when I'm down or anxious I'll go on the vent and it soothes me. (I only regularly use the vent at night).