ALS community stories
Each person’s experience with ALS is different and comes with a unique set of challenges that spark inspiration and hope. It is through sharing these experiences that we can help one another.
Nutrition Month Spotlight: A Registered Dietitian’s Role in ALS Care
Shameem Kizar, a registered dietitian (RD) at Kaye Edmonton ALS Clinic in Alberta, highlights the importance of having an RD as a part of an ALS multidisciplinary care team.
March 31, 2026
The role of a registered dietitian (RD) can sometimes be misrepresented, misunderstood or undervalued. As someone who has dedicated their career to providing nutrition assessment, counseling and education to patients with neurodegenerative conditions, it is my pleasure to lay out the important role that RDs play in supporting those with ALS.
What is a registered dietitian?
RDs are experts in food and nutrition. As regulated health professionals, we translate scientific, medical and nutritional information into practical therapeutic diets and meal guidance.
What can a dietitian do for ALS patients?
One of the best things a person living with ALS can do, nutritionally speaking, is to maintain their weight. People living with ALS may experience weight loss for a variety of reasons, including hypermetabolism, meaning they may burn more calories at rest than what was previously normal for their body. An RD can help patients make sure they are taking in enough nutrition to maintain their weight, possibly helping to slow down rate of progression and keep lung function stable for longer.
For someone first seeing an RD, they may have the misconception that we are the “food police”. For people living with ALS (and honestly everyone else), there’s no such thing as “bad” food. Since the goal in ALS is to maintain weight, an RD works towards this goal, keeping in mind the foods that a person values. I try not to tell people “no,” rather an RD can help modify a food or find a safer, more manageable substitution.
When should a person living with ALS be referred to an RD?
It’s really important for anyone living with ALS to see an RD early on to build a comfortable relationship. As ALS progresses, persons may need assistance related to difficulty with swallowing, weight loss, meals and more. Having an informed expert on food and nutrition to confide in can provide peace of mind. RDs can answer questions about modifying diet or sharing more information about changes down the line, including a feeding tube. Having a working relationship with an RD can help your voice be heard and balance what is important with managing nutrition.
Another misconception for RDs, knowing that we work in nutrition, is that a feeding tube is only done when someone living with ALS can no longer swallow. In fact, it’s often the safest to get when lung function is optimal, so getting a feeding tube earlier in someone’s disease progression may be beneficial. Early intervention can also help with some oral intake that might be troublesome. For instance, a person might have no issues swallowing their meals, but medications or liquids might pose a challenge. A feeding tube could help provide an alternative way to get in medication, stay hydrated, and help to supplement nutritional intake.
So, if you are living with ALS or caring for persons living with ALS, speak to an RD, we’re worth it!
