Nutrition

The nice thing for us ALS patients is, that a small weight gain is usually a positive thing.

Here are my personal experiences and tips on eating and drinking. Since I can still eat and drink "normally" at the moment, there is no experience with the PEG (percustane endoscopic gastrostomy) tube yet.

The topic is aids in the sense of “tools” to support eating and drinking, but also nutritional supplements, which can offer support with our clinical picture.

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Nutritional supplements

Below are products that are available in Switzerland.

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Protein drinks

These are ideal if you can still eat “normally” and therefore your calorie needs are covered and only an additional protein needs to be covered.

Small advantage over calorie/protein drinks: much tastier, more choice and commercially available.

Our clinical picture requires a higher protein requirement. My information provides the following calculation:


Per kilogram of body weight 1 g of proteins + 30 - 50%.

For me it looks like this: 90 kg body weight = 90 g proteins + 50% (45 g proteins) = approx. 135 g proteins per day


I decided to save the hassle of counting proteins at every meal. I eat as I please, balanced if possible, and supplement the whole thing with 2-3 protein drinks throughout the day. In my case - after consulting a nutritionist - this should cover my needs.


These protein drinks have become a lifestyle for some time and every retailer has them in their range. Below are a few examples:

Emmi High Protein Drink

Chiefs High Protein Drink

Oh! (Migros) High Protein Drink

Ovomaltine High Protein Drink

Foods with added protein

In addition to protein drinks, there are various products that are enriched with additional proteins for the same purpose. These are mainly dairy products, such as yoghurt or pudding etc. and complement the brands mentioned above.

Of course, there are also many natural protein suppliers


The protein content can vary greatly, as the table below shows. There are many tables on the Internet that show the content, even when cooked. The protein/protein content is also shown on each product.

The so-called “high protein products” have established themselves as part of the health hype and in principle offer quick and uncomplicated protein intake.

With our clinical picture, movement steadily decreases and so does appetite. It can therefore become increasingly difficult to eat enough natural food to cover the protein requirement. These “high protein products” can represent an intermediate step before you resort to high-calorie nutritional supplements and then finally carry out the diet via the PEG tube.

Calorie drinks

Over time, our appetite can decrease due to lack of exercise. Swallowing solid food and later liquid food also becomes more difficult. In both cases, a lack of calories and other nutrients can result due to reduced eating.

There are special high-calorie drinks that compensate for this deficiency. This means that enough calories and other nutrients are absorbed with a “smaller amount”. Unfortunately, these drinks are not a highlight in terms of taste, as I have heard from various sources and I had to experience for myself during a “tasting”.

Since I don't have to rely on such drinks myself, I only know two brands:

Fresubin from Fresenius Kabi

resource fibre from Nestle

Aids / Tools


Drinking straw

Liquids such as drinks or soups can usually be easily consumed through a straw. For me, the biggest advantage is that it allows me to maintain a minimum of autonomy.

However, there are a few points to keep in mind:

Straws come in a variety of materials, such as plastic (now banned, restricted or on the verge of being banned in many countries), glass, metal, cardboard or wood/bamboo.

Glas

In my opinion it is the best choice today, practical, hygienic and sustainable. There are providers with a very extensive selection of straws. There are small sets that are very practical for on the go and come in a fabric case with a matching cleaning brush.

halm.co

Metal

These are usually made of stainless steel and are therefore hygienically unproblematic and also easy to clean. What I find to be a disadvantage is the metallic taste, depending on the drink, and the risk of burning your lips with hot liquid.

halmbrueder.de

Plastic

These straws are generally suitable for all types of liquids, whether cold or hot. If you clean them immediately after use, you can easily use them several times. The big disadvantage is the ecological aspect, which is why its production is/is banned in many countries.

Cardboard

From an ecological point of view, cardboard is a good alternative. However, from a practical perspective there are a few caveats:

When exposed to hot liquids, the cardboard quickly becomes mushy and is no longer usable. In addition, it can only be used once and a slight change in taste can be felt with certain liquids.

It is possible that it contains harmful substances. (Report Swiss Television)

Wood/Bamboo 

These materials would also take the ecological aspect into account. But even with these variants, the taste is usually noticeably changed and cleaning is not that easy. The contamination on the inside is many times higher than that of glass or metal.

It is possible that it contains harmful substances. (Report Swiss Television)

Tip


For hikers or endurance athletes, there are hydration systems that have a bag in the shape of a backpack. These bags are available with a capacity of approx. 1-2 liters. The liquid in the bag is drunk through a tube. The mouthpiece has a closure that opens when you bite together. This backpack can be easily attached to the wheelchair. The mouthpiece must either be brought to the mouth manually or one organizes/creates a holder with which the mouthpiece can be gripped with the mouth.

Attention 

When filling with liquids containing sugar, special attention must be paid to cleaning! If necessary, rinse with carbonated water.

Good to know


A positive side effect of using a straw is that drinking also trains the soft palate. A weakened/loose soft palate leads to snoring/interruptions in breathing when lying on the back and severely impairs speaking. A weak soft palate allows air to escape through the nose when speaking, resulting in nasal speech that is very difficult to understand.