Dietary Issues for Patients with Lou Gehrig’s Disease
Guest: Nina Crowley –
Host: Dr. Linda Austin –
Dr. Linda Austin: I’m Dr.
Linda Austin. I’m talking today with
Nina Crowley who is a registered dietician here at the Medical University of
South Carolina. Nina, in this podcast,
we’re going to be talking about eating issues for the person with ALS, Lou
Gehrig’s disease, Amyotrophic Lateral Sclerosis. Why would there be special dietary issues for
that group of patients?
Nina Crowley: Well, when we see these patients in our
monthly clinic, we try to address some of the issues that may already be
present as well as those that we want to prevent. So, as the disease progresses, we try to see
them at every visit, so we can see how long it’s taking them to eat a
meal. We try to see what food
consistencies bother them. Certain types
of dryer foods may give them trouble. We
try to make recommendations so that they can have the safest consistency so
that they can meet their nutritional needs.
Austin: What, specifically, are the
kinds of problems that they have due to their illness?
Nina Crowley: They may have problems chewing and
swallowing, getting enough fluids, and meeting their hydration needs. And some of the higher calorie, higher
protein foods may be ones that give them trouble, as the muscles and everything
become a little bit weaker. That’s where
we try to step in and recommend the higher calorie, higher protein foods, to
get all of their nutrition in a smaller amount.
Austin: So, let’s imagine I’m somebody
who is in the early stages of ALS, what sorts of advice might you give me at
the first visit?
Nina Crowley: I would try to try to get a sense of where
you’re starting from and try to see, in general, how you’re eating, which may
be completely fine at this point. I
would try to see how long it takes you to eat a meal, what kind of foods you’re
eating, how many meals a day, if you’re drinking enough fluid, and any other
kind of supplements and then try to get a plan.
We also discuss the topic of a feeding tube or some enteral nutrition
early in the conversation with the patient with ALS, so when it comes up to
them needing it, that discussion will have already taken place.
Austin: So, in other words, you would
ask them, if you were to get to
the point of not being able to swallow on your own, do you want a feeding tube, you would have had
that conversation up front?
Nina Crowley: Yes.
Austin: Is that right?
Nina Crowley: That’s correct.
Austin: Although, I’m sure there would
be room for a person to change their mind in either direction, correct?
Nina Crowley: Right.
And, a lot of times we want to talk about it up front because you want
to put it in place proactively so that if they need it for hydration,
medication, or the occasional nutrition supplement, it’s there. They can still be eating as much as they can,
but you put the tube in place before they become
malnourished or their status declines.
Austin: I see. What are some good foods to eat, good ways to
get that high protein, nutritionally rich diet, when swallowing becomes more
Nina Crowley: A lot of times when patients can’t eat a lot
of meat or higher protein foods, we recommend a lot of dairy sources, to get
the protein without a lot of unhealthy fat, so, things like yogurt, cottage
cheese, milk, other types of nutrition supplements, like Ensure or Boost,
things like that, become a way to meet their fluid and their protein needs.
Austin: So, is it, basically, to go to a
softer, more liquid diet?
Nina Crowley: When they need to. And for most people, the
foods they have trouble with are very specific, like popcorn or nuts. These may bother one person, but not someone
else. So, we try to be very
individualized in what we recommend so that they can still enjoy their meals
without having to compromise too much.
Austin: What other sorts of advice do
Nina Crowley: Hydration really becomes an issue because
sometimes swallowing clear liquids is more difficult than the thicker, sort of,
protein milkshakes, or things like that.
So, hydration becomes one of the things we focus on a lot. Also, dealing with constipation in these
patients, we really try to get them enough fluids. So, for some patients, we try to encourage a
feeding tube. For someone who has
trouble with water and meeting their fluid needs, we want to get them as
hydrated as possible while they’re taking in food.
Dr. Linda Austin: What are some of the questions that patients
have about feeding tubes? I would
imagine just comfort would be a major issue.
Nina Crowley: And, a lot of times, they don’t want to
prolong something that’s inevitable. So,
people think that if they get a feeding tube, that’s sort of the last
step. So, we try to focus it more around
being proactive and being able to deliver their food and fluids through the
feeding tube so they can still eat to enjoy the food, but without having to eat
more than is comfortable. And pain,
that’s always an issue with any kind of procedure, so we do talk with them
about that, and we have a great team that does place feeding tubes in these
patients. I think once they talk with
that person, they become more comfortable with it.
Austin: In your experience, do most
patients opt to have a feeding tube, or not, or is it evenly split? What has your experience been?
Nina Crowley: It depends on the person. We do make it available to everyone, and the
team, the doctors and the rest of the team, discuss it at several points
throughout their disease process. So, I
couldn’t say an even split or not, but the patients who do get a feeding tube
earlier in the process can probably meet their nutrition needs better.
Austin: Thank you so much.
Nina Crowley: You’re welcome.
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