Edward Kasarskis, M.D., Ph.D., is a professor in the Department of Neurology of the College of Medicine and the Graduate Center for Toxicology and Nutritional Sciences at the University of Kentucky in Lexington.
In 1998, he was part of an American Academy of Neurology committee that developed guidelines (a practice parameter) for ALS and is now studying the role of nutrition and assisted ventilation in this disease.
Q: Why should you worry about good nutrition if you have ALS?
A: The issue in ALS is usually not whether you’re eating a correct balance of foods. It’s a matter of eating in sufficient amounts to maintain bodily functions.
People will say that their family member with ALS eats so slowly that everybody else is finished eating and the dishes are cleaned up, and they’re still eating. It’s exhausting to have to concentrate so hard to keep from choking, and you can fall behind on your calories very insidiously.
You won’t cure or slow ALS with nutritional supplementation if you’re already well nourished. However, you’ll prevent accelerated deterioration due to nutritional insufficiency if you meet your caloric needs.
Q: Do ALS patients have special nutritional needs?
A: We don’t know how many calories to add if you have a lot of nonfunctional muscle contractions, such as fasciculations, cramps or spastic muscle tone. On the other hand, if you’re not as physically active, that factor suggests a reduced caloric need.
The balance between the two is hard to predict. In our study we’re trying to develop a specific equation to predict the caloric needs in ALS on a patient-by-patient basis.
Q: Is a PEG — percutaneous endoscopic gastrostomy — tube the solution to taking too long to eat and falling behind on calories?
A: A PEG tube is a means to an end. It gives you a second route to maintaining nutrition.
Q: Does it also protect against inhaling food or liquids into the lungs (aspiration)?
A: When I first went to work on the practice parameter, everybody said that PEG would prevent aspiration, but actually, it doesn’t really do that.
Some of the aspiration comes from saliva, so you can still get aspiration pneumonia [infection from nonsterile material in the lungs] with a PEG in place.
Also, regurgitation of food into the esophagus and mouth can occur with PEG, especially if you’re lying in bed. A PEG probably lessens the risk of aspiration, but it doesn’t completely prevent it.
Q: Can you prevent aspiration by not lying down after taking food through the tube?
A: It’s probably better to sit up for a while after a meal. But some people can’t tolerate large feedings and do better with a pump that puts in the liquid nutrition a little bit at a time around the clock. You have to individualize this.
Q: Is there a point at which it’s too late to get a PEG tube?
A: This is a controversial point. In my opinion, it’s best to get the PEG in place before the FVC [forced vital capacity, a respiratory measurement] falls below 50 percent of normal, for safety reasons. No absolute rule here, but a message of additional caution if FVC is low.
A low FVC means increased risk from the conscious sedation used during PEG tube insertion. There are reports of supporting respiration with BiPAP during the procedure.
Q: Why do some people resist getting a PEG tube?
A: A big misconception is that if you have a PEG, you can’t swallow by mouth. That’s not the case. For example, you can get 90 percent of your nutrition through the tube, and the other 10 percent you can put in your mouth — whatever you find pleasurable. You can take small portions and eat with the family.
There’s also a conceptual hurdle. In the mind of the public, a feeding tube is a sign of being a debilitated little old lady in a nursing home. It brings to mind that sort of image. But a PEG is not a heroic, end-of-life measure. It’s an insurance policy so you get adequate nutrition.
Q: Is there a big difference between PEG tubes and other kinds of tubes?
A: PEG is the usual way in North America to insert gastrostomy tubes. It involves using an endoscope, which is a lighted tube that goes down the esophagus and into the stomach, during the insertion.
In England, tubes are generally placed using a procedures called a RIG, radiographically inserted gastrostomy tube, or PRG, for percutaneous radiologic gastrostomy. You have the patient swallow some barium and take an X-ray to see where the stomach is.
These are about the same in terms of complications, but it makes sense to me to have a look through the endoscope. You have a little more control.
Q: What should you put in the tube?
A: It’s much easier to get commercially available products than to grind up food. There’s a variety of them , like Ensure, Jevity, etc. You can usually find something that’s tolerable.
You need to take in extra water so you don’t get dehydrated, and you can throw in a heaping teaspoon of Metamucil powder every day to prevent constipation.
Q: What about the pleasant effects of things like coffee and alcohol?
A: You should try to do what’s pleasurable. You can put those things in the tube, or if you want to have a beer by mouth, that’s OK. There’s no point in not enjoying what you find enjoyable. If I get ALS, I hope to have a couple of beers a day.