Leave My Diet Alone!

Right from the beginning of my diagnosis, I was told that heavier people survive longer with ALS. While the doctors could not express a comprehensive reason why, there were suggestions that it might have to do with ketones and mitochondria, or it might have to do with body reserves when you could no longer eat. All we know for sure is that being fat is a predictor of longer survival times. It's not always true, but it's true often enough to be statistically significant.

I get a lot of crap from people who tell me I am not eating properly. They want me to eat more vegetables. They want me to have a better diet. When I went to my first ALS clinic I weighed 215 pounds. The medical team suggested I gain weight. I took them at their word and very quickly went from 215 pounds to 240 pounds. It only took about 3 months to put on that weight. The next big leap came last year on the road, where I went from 245 pounds to 260 pounds.

That's when people around me started to make "suggestions". The suggestion was that if I lose a bit of weight, it would be easier for me to make my transfers, especially as my arms got weaker. The suggestion was that the body fat around my waist just wasn't good for me, and losing 10 or 20 pounds might not be such a bad idea. The suggestion was made that my diet should have less meat, more veggies, fewer carbohydrates, more fibre.

The problem is that NOBODY gets it. Everything you think is right for your health is wrong for mine. There are any number of ALS related health and exercise studies, studies like this one from the Harvard Gazette which clearly states that PALS on a high protein, high fat, high carbohydrate diet live longer, on average, that those who eat to maintain weight and especially those who lose weight, regardless of reason. Other studies have found links between Ketogenic Diets and improved survival rates in mouse models.

The doctor doing the Harvard study concludes his article by saying "I’m optimistic that interventions designed to maintain or increase weight could be even more effective if started before patients have lost a significant amount of weight." That's what I did. My doctor got me on a weight gain diet immediately. He didn't have to tell me how; I knew what to do. I gained weight. My progression slowed.

Maybe I should go on a diet now. Maybe I should lose some weight. Maybe I should eat less meat, less rice, less pasta. Maybe it will help me die sooner. I'm beginning to think that's not such a bad idea, dying sooner. I'll tell you though, given that I love food and wine, it's not likely my preferred way to go. It's one way, but I doubt it will be my way. And once I can no longer eat, it won't matter anyway. I'll go quickly then.