Discussing ALS

[Amanda]

Do you feel obligated to tell people outside of your loved ones that  you have ALS? How did you tell your loved ones? Has telling people brought you support from unexpected places?

[Cindy]

When I was diagnosed I told my family that Lou Gehrig and I have more in common than our love of baseball. I tried to keep it as light as I could. I’m 3 1/2 years in since symptoms began. Limb onset. Feet and legs. Slow progression. Just beginning in fingers and hands. We moved into a 55 plus community. We did tell our neighbors and knew who to leak the info to so that most everyone knows.
people don’t ask but when they look like they want to know we tell. No walking on eggshells for them or for us.

[Author]

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