Multi-disciplinary care is vital for people living with ALS. As we often say, it takes a community to fight for those impacted by this disease. Dietitians are an important part of this care team, providing not only advice, but support and encouragement for people living with ALS as well as their caregivers and families.
We sat down with clinical nutritionist Madura Arunasalampillai to discuss the role of nutrition in disease progression, how she approaches overcoming common nutritional challenges for people living with ALS, and what she finds most rewarding about working with ALS patients.
Q: Why is nutrition important for people with ALS?
Madura: Nutrition plays a crucial role in the course of ALS, both in terms of quality of life, but also in slowing disease progression and potentially improving survival,i so it is an important component of a multi-disciplinary approach to managing the disease.
Even if a person with ALS is eating well right now, it’s still valuable to discuss the role of nutrition following their diagnosis so they can start developing healthy habits early on. A dietitian can arm people living with ALS with the right strategies to maintain their weight and strength while minimizing challenges related to eating and risks associated with swallowing difficulties or other ALS symptoms.
Q: Why is weight stabilization such an important goal for people living with ALS?
Madura: Studies have consistently shown that when a person with ALS experiences weight loss (which includes both fat tissue and muscle tissue loss) it is associated with a poorer prognosis.i,ii Conversely, people living with ALS who are overweight or moderately obese (BMI 25-35) may experience slower progression of ALS symptoms and longer survival.i
Nutrition is critically important for managing a person’s weight following an ALS diagnosis. The primary goal of nutrition for people living with ALS is to stabilize their weight. Weight loss is usually never recommended after diagnosis, even if the person presents as overweight or moderately obese. This advice often feels counter-intuitive for many people who have been trying to lose weight prior to their diagnosis.
Q: What are some of the challenges of maintaining weight for people living with ALS and what are some of the nutritional approaches to overcoming these barriers?
Madura: People living with ALS often use more energy or calories due to fasciculations, which are involuntary rapid muscle twitches that are too small to actually move a limb, and/or spasticity, which is an abnormal increase in muscle tone or stiffness of muscle, as well as increased effort to move and breathe.
A dietitian can help ensure a patient is consuming the right type and quantity of food to balance their energy input and output, by addressing some of the common barriers that limit oral intake.
Nutritional interventions potentially slow the loss of function and improve survival for people living with ALS.
Q: What are some of the other common barriers when it comes to getting enough calories or nutrition for people with ALS?
Madura: There are a few common challenges that we see, including dysphagia, increased fatigue, decreased respiratory function, difficulty with self-feeding or preparing meals, excessive salivation, gastrointestinal intolerances, anxiety and/or depression.
The good news is, nutritional interventions can overcome many of these common barriers that limit oral intake. For example, enriching meals with high-calorie foods, ensuring protein is consumed at every meal, and in some cases, adding oral nutritional supplements if needed.
Q: What is dysphagia and how can a dietitian help with this condition?
Madura: Dysphagia means having trouble with swallowing, and it is a concern for people living with ALS due to the risk of aspiration pneumonia – an infection when food, liquids, saliva or bacteria from the mouth enter the lungs.
It is important for a swallowing evaluation to be conducted by a dietitian, occupational therapist or speech-language pathologist following a diagnosis of ALS. Depending on the person’s symptoms and the results of their swallowing evaluation, we can help teach them how to modify the textures of food or consistency of liquids based on their individual needs. For example, if they find chewing takes longer, they can avoid hard, dry foods like granola, nuts, seeds and even raw vegetables, and instead try well-cooked, soft foods and chopping foods into small pieces.
Even if a patient is not yet experiencing any trouble swallowing or other symptoms that affect their eating right now, a dietitian can advise them on the importance of nutrition in ALS progression and help them develop good nutritional habits early that will benefit them over the course of their disease.
Q: Do people with ALS have different nutritional needs at different stages of disease progression?
Madura: This is a good question. We find that symptoms are actually a much larger factor in nutritional needs than the stage of disease progression. For example, someone who is still walking but having a lot of trouble doing so (i.e., exerting a lot of effort and energy) might need more calories than someone in a wheelchair. Symptoms such as twitching, difficulty breathing, or walking with difficulty may all lead to an increased need for calories or protein, so these are important considerations for designing the right nutritional program for someone.
Q: What if a person living with ALS cannot consume enough calories/nutrition on their own?
Madura: For some people living with ALS, when oral intake is insufficient to meet their nutritional needs, they are at a high risk of aspiration due to severe swallowing difficulties, or their FVC (forced vital capacity) approaches 50%, tube feeding may be recommended.iii Tube feeding can help meet nutritional needs, stabilize weight, decrease anxiety with meals, conserve energy and potentially improve survival.
Q: Where can people go for more information on nutrition in ALS?
Madura: If a person living with ALS does not have access to a nutritionist or dietitian at their ALS Clinic, they can be referred to a dietitian by their healthcare provider.
Working with those impacted by ALS is incredibly rewarding. People living with ALS, as well as their caregivers and families, appreciate and celebrate every win, every goal they achieve, and it feels good to know that the work you do is helping them achieve something that might seem small to some, but is huge for them.
ii Moglia C, Calvo A, Grassano M, Canosa A, Manera U, D’Ovidio F, Bombaci A, Bersano E, Mazzini L, Mora G, Chiò A; Piemonte and Valle d’Aosta Register for ALS (PARALS). Early weight loss in amyotrophic lateral sclerosis: outcome relevance and clinical correlates in a population-based cohort. J Neurol Neurosurg Psychiatry. 2019 Jun;90(6):666-673.
iiiChristen Shoesmith, Agessandro Abrahao, Tim Benstead, Marvin Chum, Nicolas Dupre, Aaron Izenberg, Wendy Johnston, Sanjay Kalra, Desmond Leddi, Colleen O’Connell, Kerri Schellenberg, Anu Tandon, Lorne Zinman. Canadian best practice recommendations for the management of amyotrophic lateral sclerosis. CMAJ. 2020 Nov;192(46):E1453-E1468.