How To Manage Living With a New ALS Diagnosis

Updated on March 21, 2024
senior woman in a yellow striped shirt sits in a wheelchair outside on a park walkway

Receiving a diagnosis of amyotrophic lateral sclerosis (ALS) poses significant changes and challenges. If you’re in this situation, we’re here to help. Below is some advice on how to manage living with a new ALS diagnosis.

Develop and Lean on a Support System

Building a strong support system is essential when managing a new ALS diagnosis. This network can include family, friends, healthcare professionals, and support groups for individuals with ALS. Connecting with others who understand your situation can offer emotional support, practical advice, and a sense of community. Don’t hesitate to lean on your support system for assistance with day-to-day activities or simply for companionship during difficult times.

Engage With Healthcare Professionals

Timely and continuous engagement with healthcare professionals ensures that you receive appropriate care and support tailored to your specific needs. This team might include neurologists, physical therapists, speech therapists, and other specialists experienced with ALS. Regular checkups allow you to address symptoms, adjust treatments, and explore interventions to maintain your quality of life.

Communication with healthcare providers also opens the door to learning about your condition and how to manage it. For instance, you ask your healthcare provider about the uses and functions of a Wartenberg pinwheel if they use one to test your skin’s sensitivity. This knowledge can make going to the doctor for checkups and navigating your condition more straightforward and less intimidating.

Focus on What You Can Control

In the face of a diagnosis that brings much uncertainty, focusing on aspects of your life that you can control can be empowering. This includes making healthy lifestyle choices, such as maintaining a balanced diet, engaging in permissible physical activity, and managing stress through mindfulness or hobbies. Small, daily victories can contribute significantly to your overall well-being and outlook.

Seek Professional Guidance for Emotional Well-Being

The emotional impact of an ALS diagnosis is profound. Seeking professional guidance from a psychologist or counselor experienced in chronic illness can provide strategies for coping with the emotional rollercoaster that accompanies ALS. They can offer tools to manage anxiety, depression, and the grieving process, helping you to maintain mental health resilience throughout your ALS journey.

Living with ALS is challenging, and coping with the disease is difficult, especially for new patients. This advice on how to manage a new diagnosis can make a meaningful difference in supporting this journey. Remember, you are not alone in this; communities and resources are available to support you at every step.