ALS And Appetite

I am hungry this morning; that's a good thing. My calorie intake yesterday was about 2,000 calories; not enough, so maybe that is why I want to eat this morning.

Appetite is a major issue for most ALS patients, especially late in their disease cycle. The loss of appetite is also an indicator for ALS. Patients often report losing weight without really trying along with an unwillingness to eat. Some of this weight loss is simple to explain; we lose weight because of muscle wasting. But in almost all documentation, patients with ALS lose more weight than that represented by muscle wasting. With almost all ALS patients, maintaining weight seems to be a major challenge.

My weight challenges were quite the reverse back in 2011. That summer I weighed 255 pounds and perhaps more; I was fat, very fat. Then I had the accident with the motor and I thought to myself, this would not have happened had I been in better shape, and that included my excess weigh. So I went on a diet, reducing my caloric intake and shifting away from foods that triggered the fat storage system in my body. It was a kind of "paleo" diet with more emphasis on fresh fruits and vegetables and the complete elimination of breads and other sugary, carbohydrate loaded foods.

With this new regime, I found it very easy to eat less and the weight started coming off in a hurry; I thought my stomach was shrinking due to my diet. I dropped fairly rapidly from 255 pounds, or perhaps more, down to 215 pounds. After a slight rebound I settled in at 220 pounds in the fall of 2011. Then came 2012 and my drive to get my weight down to 200 pounds. The problem, however, was that I was finding myself less able to walk, less able to do the physical activity that had been the hallmark of my life so far.

Then in November of 2012, I was diagnosed with ALS. Part of that diagnosis was something called cachexia. Cachexia is a wasting syndrome with loss of weight, muscle atrophy, fatigue, weakness, and significant loss of appetite in someone who is not actively trying to lose weight. In other words my weight loss may have had nothing to do with my diet and exercise, and everything to do with ALS!

Given that frustrating assessment along with the potential ongoing effects of this stupid illness, I said to hell with the diet. I started to eat and drink whatever I wanted, whenever I wanted. This rebound had a fairly immediate impact on my weight; I gained back 20 pounds almost immediately however I am now losing weight again despite efforts to eat. It's a good thing I am in a wheelchair because my pants slump down when ever I stand up. I need a new belt.

This whole appetite issues is well covered in a recent study entitled "Severe Loss of Appetite in Amyotrophic Lateral Sclerosis Patients: Online Self-Assessment Study". This study looks into the eating challenge for ALS patients. Its principal finding was that "reduced appetite is a common ALS-associated symptom which may impair the individual capacity to maintain adequate nutrition."

The reasons for loss of appetite are still largely unknown despite this and other research, especially weight loss in the early stages of ALS. Certainly muscle wasting is part of it but the incidence of weight loss and amount of weight lost surpasses that which can be explained by loss of muscle. One factor in later stages suggests that loss of appetite is more likely due to dyspnea, the loss of breathing capacity and diaphragm strength. Early satiation when eating is also likely related to loss of diaphragm strength but there are some suggestions it may also have something to do with an immunological response triggered when an ALS patient eats.

What all this means is that when I say I am full, I mean I feel full even though I still have room in my stomach and still need to eat. Basic calorie requirement for someone my size with the kind of physical activity I used to undertake is about 2,500 calories a day. With my reduced activity levels, now it is around 2,200 calories a day, perhaps a bit less. When you consider the increased metabolic rate that comes from ALS and the cachexia, the nutritionists recommend a higher caloric intake. In addition begin overweight right now will be a benefit when I can no longer eat.

Consider my daily eating pattern. I have breakfast, often something as simple as toast and coffee or perhaps, when I am on the road, a Tim Horton's or McDonald's breakfast sandwich. That's about 500 calories. I am usually just not hungry at lunch. Breakfast typically does me until supper where I have to eat something in the order of 2,000 calories to get to my daily minimum. That's dinner plus a second helping. For those of you who say I should just eat more during the day, I just don't feel hungry; I just don't want to eat.

So after that first bite, even though I feel full, I continue to eat. I know I have to take in 2,000 to 2,500 calories a day. Some days that is a long order. Other days it is easier. I recommend a beer and nacho diet. It seems to be working for me.