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Taking Charge of ALS: Proactive Care Tips for a Progressive Disease

Amyotrophic lateral sclerosis (ALS) is an incurable, progressive neurological disease that affects muscle control, gradually making movement, speech, and breathing more difficult. While its progression cannot be stopped, a proactive approach can help individuals manage symptoms and maintain their quality of life for as long as possible. With the right combination of expert care, practical strategies, and supportive tools, those living with ALS can continue to stay engaged, comfortable, and empowered in their daily lives.  

1. Prioritize nutrition and hydration

Nutrition and hydration are two key factors in managing ALS, especially as swallowing becomes more difficult. A dietitian and speech-language pathologist (SLP) can help create a plan that supports nutritional needs while making meals easier to consume. This might include softer foods, liquid nutrition, or thickened beverages to prevent choking and ensure adequate intake. Staying hydrated and getting enough calories can help preserve energy and muscle function, making everyday tasks a little easier. 

2. Use assistive technology to stay independent

Assistive technology greatly enhances daily living. From power wheelchairs that improve mobility to speech-generating devices that support communication, these tools help people living with ALS stay engaged and maintain some measure of independence. Home modifications, such as ramps, grab bars, and adjustable beds, can also improve safety and ease of movement, allowing for greater comfort and convenience in daily tasks. 

3. Stay connected and engaged

Living with ALS can take an emotional toll, which is why staying connected with others and participating in activities is so important. Whether it is joining support groups, connecting with family, or adapting hobbies to fit changing abilities, finding ways to stay socially and mentally active is key. Programs like LifeCare Advocates’ Flourish, which focuses on cognitive engagement, emotional well-being, and meaningful activities for participants, can help individuals with ALS maintain a sense of connection. For those looking to connect with others facing similar challenges, ALS support groups in Massachusetts provide a valuable space for sharing experiences and finding encouragement. 

4. Build a strong care team

Managing ALS requires a team approach. Neurologists, respiratory specialists, and other healthcare providers each play a role in addressing different aspects of the disease. Life Care Managers add another layer of support by helping individuals and families navigate care options, coordinate services, and anticipate future needs. Having a trusted advocate supports the goal of ensuring care remains personalized, proactive, and responsive to changing circumstances. 

If you or a loved one are facing the challenges of ALS, LifeCare Advocates can help you access the right resources and create a plan that fits your needs. Contact us today to learn more about our support services.