Sunday, 3 February 2013

Buddha Belly

I have put on a few pounds lately, about five I would guess. I don't own a scale these days. This is kind of frustrating as I had spent the last year and a half getting my weight under control. Of course there is some contention that my weight loss, which started after the symptoms of ALS appeared, is simply a function of the disease.

So I put that theory to the test, ALS and weight loss. I started eating all the things I had given up. I started eating bread again, along with desserts and grains and all that stuff. On my diet, my line was "if it's white, it's bad". So rice was out except for small portions of brown rice, bread was bad except the odd bit of brown bread. And God forbid I should eat ice cream (but I did anyway sometimes).

My diet had moved to more proteins and fewer carbs. I started losing weight. When I started eating more carbs, I started gaining weight again. My Buddha belly is growing once again. The real question is, should I worry about this? It's not as if the weight gain is going to kill me. My heart will not be more burdened or my life span unduly shortened by a few extra pounds. Even if I was morbidly obese, the morbid part is coming from somewhere else.

In addition, given what my future looks like, it seems only fair to me that I should enjoy eating while I can still do it. I want to savour the taste of good food before I lose the ability to eat altogether. And it's not as if these pounds are going to chase off all the women clamouring to be with me. So what the hell, why not eat and enjoy it?

There is a clinical side to this as well. With ALS, my doctors have advised me not to lose weight and not to engage in strenuous exercise. There will come a time when I cannot eat; having those extra pounds will prolong my health believe it or not. Strenuous exercise is actually a net negative for me these days. Working out to lose weight will simply exacerbate the damage of the dead muscles and will actually accelerate disease progression.

What the doctors and physiotherapists tell me to do is lightly exercise muscles that aren't affected by ALS progression yet and stretch the muscles that are dead in order to reduce cramping. This means that doing simple things like getting dressed, brushing teeth, going to the bathroom, getting in or out of bed or even turning over in bed constitute adequate exercise for me. These activities are very tiring to failing muscles and can take a lot of energy, in other words calories. It may sound odd, but the mere act of trying to lift my quilt with my dead left foot requires a substantial amount of energy and attention. If I go too far, I get exhausted quickly to no benefit.

Now to get really counter-intuitive; think about the exercise process. It is intended to burn fat and build muscle. I cannot build muscle except in those muscles that are not affected yet. So if I engage in any strenuous active such as a cardio workout and I don't have fat, my body burns muscle instead. I need the fat as a target for any sort of calorie loss, especially later in the game.

Perversely, it is not the dead muscle that is burned if there is no fat, since that muscle tissues isn't even connected to my nervous system; those muscles are not firing and not working. The "feel from the burn" happens because of sensory nerves, all of which are working fine. It is the motor nerves that are dying. What most people feel as the burn from exercise happens with me too, but there is no underlying muscular development in the damaged muscle tissue.

To top it all off, we really don't know which of these muscles has entered the denervation process, since it is almost impossible to tell in the early stages. There is no test for ALS at any level, let alone the muscular denervation level. They can only tell if the nerves are failing once the failure becomes highly evident. All we know for sure is that all of my voluntary muscles will eventually be affected. In addition the human system is all linked together, so working my upper body actually stresses my legs, which results in muscle exhaustion which is really nerve exhaustion since the muscle don't actually work anymore.

It gets even better. Recent studies have found that people who drink alcohol have slower progression rates than people who don't. This is a loose correlation and nobody can really prove causation, but this is the only silver lining I have seen so far. Drinking helps!

So basically, I need to be a fat drunk to stay alive longer. Any takers?


  1. Your research has revealed a very thin silver lining to a very thick cloud. Eat well, my friend!



  2. And drink up! This is so sad except for the eating and drinking. I love you my dear son.