I am Lindsey Heiser

a family member in a familial ALS family,
a family member of someone living with ALS,
an ALS gene carrier,
caring for someone living with ALS,
living with ALS


I remember my sister and brother coming up to me and asking what my father was like when he was healthy.

My father has had ALS for 15 years. Growing up I was fortunate enough to see my father in his “healthy” stage. I remember my sister and brother coming up to me and asking what my father was like when he was healthy. It didn’t really occur to me how much the disease affects them more than me. My father has been working now for 28 years. I cannot express enough how much he loves what he does. He has always told me to do what I love, and that hard work pays off.

There was a period where my father was receiving treatment. I remember nurses coming to our house and needing to put medicine in a port my father had in his chest. Unfortunately, this didn’t work for him, and he got worse. It was very rough on my family to go through this period. There have been some incidents that I have experience with my father.

I still remember when my father fell in North Carolina. It was around midnight, and I was hanging out with my teammates. I got a phone call from my father telling me to come back to the room. I didn’t think much of it just that it was time to go to bed. I walked into the hotel room to see my dad on the side of the bed and blood over the floor. I found out he fell and sliced his eyebrow in half. My heart was racing, and I was petrified. I was only 14.

I needed to get medical care to help my father. I got my teammate’s dad to take us to the hospital so he could get stitches. I was more upset at myself because my thoughts instantly went to what if I was there and could’ve prevented his fall. I called my mom at 1 am bawling my eyes out because she was 8 hours away and it was only me and my father. That night I needed to grow up and take on a huge responsible role. I needed to be strong for my mom, my siblings, and my father.

Even after this incident, I became aware of how much my mother must manage. It got me to thinking about how strong and admirable a mother she is to my siblings and me. She told me about various interactions she had with different individuals. People have advised her that having my sister was a mistake and having all three of her children participate in sports would be too much for our family. Honestly, my dad enjoys watching his kids play sports. Currently I play for a division 3 school where my parents haven’t missed a single home game yet.

No matter how bad your circumstance may be don’t let it defeat you, let it define you. This is something that I hold very deeply.

Now in life I feel that my father has gotten the worst. We installed an elevator in our house to try to take off the stress of going up the steps in our house, especially because he is losing his balancing dramatically. We also redid my parents’ bathroom, so it is more handicapped accessible for him to shower. Whenever we go outside our house my father is always in his wheelchair since long distance has gotten harder for him to do.

I am very fortunate to others but, also want the community to know my story. Please remember that even though times seem rough there is always hope on the horizon for all of us.

More stories

See all stories

Back to Top