Keeping up with the calendar can seem like a daunting task even when just thinking about the normal flow of the year. Halloween is right around the corner, and even thought it doesn’t seem possible Christmas decorations are up for sale already. Sure, sometimes the days seem to creep by, but at the same time the pages of the calendar can seem to fly off. Add to that the various “awareness” weeks and months and you need a calendar just to keep track of the calendar, if that makes any sense.
But there are times when we should stop and consider that many of these issues we are asked to be “aware” of are really important, some even more so to people with ALS and their families. So as we note that this is Malnutrition Awareness Week, we asked Care Service Coordinator and Registered Dietitian Mary Love to share some thoughts on nutrition for people with ALS.
By Mary Love, MS, RD
Nutrition affects every individual, regardless of age or health status. Throughout our lifespan, how we nourish our bodies plays a vital role in growth and our ability to fight disease and infection. While it is important for a healthy individual to practice good habits, it is perhaps even more significant for someone affected by a chronic illness to do so. ALS is a fatal, neurodegenerative disease marked by muscle atrophy and weakness. Its onset is sporadic, and typically either in the limbs or mouth (bulbar). In either onset, ALS presents a myriad of complications for those diagnosed, and the ability to maintain nutrition intake is no exception the affected areas. So, how does one ensure they are getting the right amount of calories while living with ALS? What are some signs a person diagnosed with ALS is not getting proper intake? In this post, we’ll explore what that looks like and ways to maintain nutrition as the disease progresses.
Why Proper Nutrition is Essential in ALS
As stated above, ALS is a neurodegenerative disease. As things progress, the nerves that communicate with our muscles eventually break down, leading to muscle atrophy and weakness in all voluntary muscles. The body is working overtime to compensate for the breakdown, which increases energy needs. With the body in a heightened state of breakdown, the risk of infection increases as well. The better a person’s nutrition status is, the more ready the body is to fight. This overtime work also causes severe fatigue, and getting enough calories helps to maximize energy levels, which ultimately can help to improve quality of life.
Signs You May Not Be Getting Proper Nutrition
A person with ALS will likely see unintended weight loss as a side effect of this disease. This is due to both muscle wasting and reduced intake. Appetite changes are also likely to occur, with a decreased appetite typically following the decrease in consumption. Swallowing and chewing difficulties (dysphagia), physical inability to feed oneself due to limb weakness, dehydration, constipation, and exhaustion during mealtime are other issues that may come up as this disease progresses. These complications often present simultaneously. If a person with ALS is experiencing any of the above, an effort should be made with their clinic team to resolve the issue and ultimately, try to maintain weight. Dieting is not recommended after being diagnosed with ALS and instead, maintenance of body weight should be the goal. As the disease progresses, weight maintenance is a good sign of proper nutrition despite these barriers.
How to Combat These Issues
Despite all of these complications, it is important to note that there are many ways to combat them through the use of adaptive equipment, supplementation and changes in daily habits that compensate for the progressive weakness. For example, a person with progressing hand weakness may benefit from a universal cuff to hold a utensil; this allows the wrist to control plate-to-mouth movement rather than relying on the dexterity of fingers. The use of a daily nutrition supplement such as Ensure can also help to maintain weight and fill in the gaps of a decreased appetite. As technology improves, there are more high-tech options such as robotic feeding arms that take the movement of feeding completely out of the person’s hand.
Food Is More than Just Nutrition
The basics of keeping a nutrition status start with keeping track of weight and noting any trends. Eating small, frequent meals can help to limit exhaustion and mealtime fatigue. Mealtime should remain a social and pleasurable activity; food brings us together and can serve as a great way to connect with family and friends. Patience on both the person with ALS and their caregiver is necessary, but can ultimately help that maintenance goal that is so important. These solutions can be discussed with the healthcare provider/clinic team, caregivers and your local care services coordinator through the ALS Association. There are many solutions available for various challenges.
Thank you Mary for sharing your insights with our community. As Mary mentions, you should contact your Care Service Coordinator if you have questions about nutrition. If you don’t yet have a Care Service Coordinator, please register with our Chapter. If you’d like step-by-step instructions for registering, watch this video.