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Diet plays a big part in living with ALS

The ice bucket challenge for ALS here in Canada has raised more than $5 million and taken social media by storm.

If this is your first time hearing about it, the short and sweet is that it’s an attention-grabbing fundraising campaign to increase awareness around ALS.

Individuals are nominated by family, friends, colleagues and the like to either a) dump a bucket of cold ice water on their heads, or b) donate to ALS, or both.

What exactly is ALS, and what does it have to do with food and eating?

ALS is short for amyotrophic lateral sclerosis.

It’s also known as Lou Gehrig’s Disease, named after the Yankees first baseman who succumbed to the disease after a career in which he was nicknamed “the iron horse” for his endurance.

The disease is rare, affecting about six to eight people per 100,000, and is very serious, debilitating and life-altering.

ALS paralyzes the nerve cells of the body, causing people to lose control of their muscles, ultimately making moving, swallowing and speaking increasingly difficult.

It does not usually affect the senses — taste, touch, sight, smell and hearing — or the mind.

The rate of muscle loss varies from person to person, and ALS is a progressive and fatal disease.

There is no known cure.

At this point, it is not known what causes ALS. Most cases are sporadic, with about 10 per cent related to genetics.

Lifestyle factors such as diet, alcohol consumption, exposure to toxins and smoking, among many others, have all been studied as potential risk factors.

So, what does all this have to do with food and nutrition?

Some individuals with ALS lose function of their mouth and throat, which can make eating and drinking a real challenge.

People may eat less, and therefore not get enough nutrition, resulting in weight loss, fatigue and weakness.

Because ALS paralyzes the nerve cells, muscles are then unable to move, ultimately reducing body muscle size and strength, resulting in weight loss.

Despite people’s activity levels being decreased with ALS, the rate at which they burn energy from food, a.k.a. metabolism, is increased.

Increased energy from food is needed for everything from moving and breathing to cutting food and chewing.

Frequently, alternate sources of nutrition become important.

Adding extra calories to everyday choices via foods like whole milk, butter, cream or honey, and using supplements like Boost and Ensure, or even tube feeding (feeding liquids through a small tube into the gut by either the nose, mouth, stomach or intestine) are often utilized to help people get enough nutrition to prevent weight loss.

To make the act of eating easier and prevent choking, people with ALS may rely on small soft foods, avoid drinking with eating, have liquids thickened, and refrain from dry foods, foods that are thin or runny, or consisting of two textures (like cereal with milk, or a stew).

Preventing malnutrition in ALS is very important, as malnutrition  increases the risk of death.

It’s estimated that malnutrition develops in about one quarter to one half of people with ALS given the physical difficulty to prepare and eat food, in addition to swallowing inability, breathing difficulty and mental distress.

To learn more about ALS, visit the local chapter site at, or national ALS site at


Amanda O’Brien is a registered dietitian in St. John’s. Contact her through the


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