This is Us

April 4, 2023

By Bonnie Woolston

ALS has been in my family for generations. Our rare form of ALS is called Juvenile ALS (or ALS4) because it evidences itself in children. My ancestors would line up their children and direct them to walk on their heels. Those children who could not get the ball of their foot up off the ground were declared to have ‘it’. Those parents weren’t wrong; children who have ALS4 (like my granddaughter) still cannot walk on their heels. Adults with ALS4 (like my son) walk with canes and struggle with stairs, curbs, slopes, any surface that is not even ground. Seniors with ALS4 (like me) are mostly confined to scooters and power wheelchairs; many cannot use their hands; some labor with breathing and swallowing. My father spent the last 8 years of his life as a quadriplegic.

But we fight on by participating in research any way we can because in the fight, we find hope. In the fight we support each other and we advocate in the halls of power to gain researchers and funding to strengthen our fighting abilities. Why? Because in the fight lies the best chance for victory. Although there are many types of ALS, all of the types have more in common with the other types than they have differences. A victory for any one of us ALS families will be a major step toward victory for all. I am ALS.

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