The daily struggles with ALS start with just getting dressed. My strength and energy are low. Every time I need a new piece of assistive equipment, I get sad that I have progressed to the next level. The thought of getting a wheelchair was devastating to me. Yet, at the same time, it gave me freedom.
My first instinct was to keep it inside, but I realized that I need to share this journey, and that I had to make peace with this. I’ve always told people to share what you’re going through with your community, with your friends and people around you. It’s very hard to ask for help – it’s the most humbling part of living with ALS. But then, you realize it makes others feel good to be able to do something for you, and you have to swallow that false pride and let it happen.
It is wonderful to know that I can call my ALS Network care manager, Cindy, anytime with a question, and she will give me the answers. She will also connect me to other people who can advise me in choosing insurance and medicare. You don’t feel alone.
The ALS Network is a game changer. They are an incredible help in my ALS journey.
Sharalyn Hamilton
Person with ALS
Visit the ALS Network’s website to see the ways that YOU can take action during ALS Awareness Month and all year long.