ALS: Dietary Issues for Patients with Lou Gehrig’s Disease

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ALS: Dietary Issues for Patients with Lou Gehrig’s Disease




Guest:  Nina Crowley – Dietetic Services

Host:  Dr. Linda Austin – Psychiatry


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.


Dr. Linda 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.


Dr. Linda 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.


Dr. Linda 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. 


Dr. Linda Austin:  Is that right?


Nina Crowley:  That’s correct.


Dr. Linda 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.


Dr. Linda Austin:  I see.  What are some good foods to eat, good ways to get that high protein, nutritionally rich diet, when swallowing becomes more difficult?


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.


Dr. Linda 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.


Dr. Linda Austin:  What other sorts of advice do you give?


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.


Dr. Linda 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.


Dr. Linda Austin:  Thank you so much.


Nina Crowley:  You’re welcome.


If you have any questions about the services or programs offered at the Medical University of South Carolina or if you would like to schedule an appointment with one of our physicians, please call MUSC Health Connection:  (843) 792-1414.


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