In most people’s journey living with ALS, they will be faced with the decision of using a feeding tube to help maintain proper nutrition and enhance their quality of life. As part of the ALS strategic care planning process, it is important for patients to proactively discuss options with their multidisciplinary care team, weighing the pros and cons, and understanding how their decision will affect their overall quality of life.
In recognition of Feeding Tube Awareness Week, we want to recognize the importance of feeding tubes for people living with ALS. The following resources have been developed to provide you with the knowledge you need to help make this decision with the minimum amount of stress and difficulty.
- ALS Association Factsheet: FYI: Information About Feeding Tubes
This factsheet explains what feeding tubes are, the types that are available for people living with ALS and provides information and tips to consider when making the decision to choose tube feeding as an option.
- ALS.org: Nutrition & Feeding Tubes
Eventually, most people living with ALS end up needing a feeding tube, either to supplement or replace eating foods through the mouth. Learn more about the importance and benefits of maintaining proper nutrition when living with the disease.
- ALS.org Blog: What to Know About Feeding Tubes and Decision Making When Living with ALS
Megan Frisk, care services coordinator for The ALS Association Rocky Mountain Chapter and registered dietitian (RD), shares her thoughts and experiences she’s had with the many patients and families she works with every day.
- ALS.org Blog: Brenda and Kelly Kraft: One Couple’s Experience with Feeding Tubes and ALS
This blog explores one couple’s personal journey through the decision-making process. “I think the decision is a personal one and there is not a right or wrong answer. Whatever the patient chooses is an acceptable option and should be embraced and supported.” – Brenda Kraft
- Connecting ALS Podcast: "Feeding tubes and the Mind Body Connection"
This podcast episode goes deep into the topic of feeding tubes with two experts from the ALS Center of Excellence at Hennepin Healthcare in Minneapolis, MN. Listen as they share their experiences talking to patients about the importance of tube feeding for people living with ALS.
- ALS Association Resources Guide: Adjusting to Swallowing Changes and Nutritional Management in ALS
This free downloadable resource guide will help you understand how swallowing is affected by ALS and what you can do to maintain nutrition for energy and strength and keep your airway open. Specific information about why and when to consider a feeding tube can be found starting on page 18.
- ALS Association Brochure: Maintaining Good Nutrition with ALS
Receiving your nutrition through a feeding tube can stop weight loss and dehydration, and help you feel better. Learn more about maintaining good nutrition, tips for safer swallowing and ideas for preparing food.
- ALS Association FYI: High Calorie and Easy to Chew Recipes
Access delicious high calorie easy chew, easy swallow recipes for people living with ALS that are also great for caregivers and the entire family!
Additional information regarding feeding tubes and nutrition can be obtained from your physician, dietitian or ALS health care team. Your local ALS Association chapter can provide educational resources and a referral to an ALS Association Certified Treatment Center of Excellence.
To continue to learn more about ALS and follow stories about people living with the disease in the community, follow our blog at ALS.org/blog.