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Two zoom calls changed my life forever in 2020. My strange symptoms of weakness and stiffness followed by muscle twitching intensified just as the Covid pandemic was exploding, so my diagnosis journey had shifted to telemedicine. The first neurologist I saw told me I had to do some testing, but I had nothing to worry about because only old men got ALS. Being a perfectly healthy 32 year old woman made that outcome seem pretty unlikely. So when a specialist confirmed my diagnosis through the screen I was dumbfounded, terrified and pretty pissed to be an outlier. But the second call was transformational in an entirely different way. Speaking with Leah Stavenhagen made me feel energized and not so alone. Leah was diagnosed the year before me at 26. She was frustrated that no one talked about young women getting ALS and was determined to connect with women like her. We began chatting online and meeting virtually to share our experiences. I felt less like an unlikely statistic or a sad story. I felt understood. This group of about 10 women across the country became Her ALS Story. Today, we are an organization of 120 members across the globe diagnosed before 35. 

Arguably the toughest thing about ALS is how isolating it is. It becomes harder to leave your house to socialize, difficult to communicate with your loved ones, and the people around you simply can’t relate to what you’re going through. It’s a recipe for being disconnected and alone which is why it’s so important to find a sense of community. I had a hard time envisioning a happy life being paralyzed. Who was I without the ability to take care of myself, hug my friends and family, or enjoy my passions like exercising. Connecting with women like me changed my perspective completely. The thought of a feeding tube was suddenly less scary when I heard about a member enjoying the effects of tequila without the taste. I was relieved to hear there were still fashionable clothing options even when it got difficult to dress yourself. I was amazed to learn that women with ALS were traveling the world, being active parents and finding ways to live fulfilling lives. Her ALS Story was demystifying what life with a terminal illness is and it wasn’t all clinic visits and planning a funeral. This community saved me.

With a professional background in communications, I enjoyed storytelling, presentations and writing. Her ALS Story gave me an opportunity to put my skills to good use to advocate for ALS. We were asked to present at a star studded ALS gala. Writing and presenting that speech was one of my proudest moments. I was interviewed by the media advocating for the landmark ACT for ALS bill and I was one of the subjects in a PBS documentary about ALS. I had found my community and my purpose and it felt awesome. Just as I was adjusting to slurred speech, trouble walking and limited dexterity, ALS progression came and pulled the rug from beneath me. I was losing the ability to type and speak rapidly. I feared my advocacy days were behind me. My Her ALS Story sisters could barely understand me on our calls and scrolling through our chat and typing messages became exhausting. I was losing connection and purpose. 

I feared the isolation would consume me, but Bridging Voice helped me acquire an eyegaze device, a Tobii Dynavox, and taught me tips that helped me adjust quickly. They programmed a special screen to make it easy to operate my phone through voice control using my Tobii and uploaded my ElevenLabs AI cloned voice so I sounded like me instead of a computer. It took time to practice and gain confidence to own my new identity as a non-verbal person. I knew who to turn to for inspiration. Her ALS Story has a chat for people who use eyegaze devices and I learned everything from the experts, from the best way to handle ignorant questions from strangers to troubleshooting tech issues. Having a built-in network of people going through the same challenges as me makes navigating ALS doable.

Embracing the transition to my Tobii has allowed me to reconnect with the world and has given me a voice again. I write press releases, blog posts, fire off emails and even give presentations. Last year, I presented at an ALS fundraiser using my AI cloned voice and seeing the crowd’s reaction was priceless. I have maintained a part of my life I was sure I’d lost. It still amazes me that some of the most talented, funny and hard working people I know are living with ALS. I know I wouldn’t be here today living such a purposeful life without Her ALS Story. While it breaks my heart that our group continues to grow, I’m comforted knowing their lives are about to be transformed just like mine was. 

Check out more stories from the women of Her ALS Story on their blog and follow their adventures on Facebook and Instagram.