We can't emphasize enough how much ALS sucks. From people that suffer from it, to their family & friends that watch them slowly lose their ability to function. From the caregivers that dedicate everything to taking care of them, to the doctors and nurses that help along the way. We can all agree – ALS is the worst.

ALS United supported both Scott and Gretchen in so many ways, and they help so many others now. They also help fund research that looks for a cure, so that others don’t have to suffer in the future. Below are examples of what they did for Scott and Gretchen.

-          Scott was first diagnosed at Rush in Chicago, and someone from ALS United was there to answer questions with the doctor, and help with next steps.

-          Scott’s brother Chris built us an ADA suite in his home, and they helped look at the plans and offer ideas / advice on what we would need to make it the perfect home.

-          Gretchen couldn’t have gotten through this without going to therapy, and was given the name of someone who specifically works with people with ALS and their caregivers.

-          ALS United helped guide them through the challenging conversations of wills, powers of attorney, final wishes, etc.

-          Helped get them numerous pieces of equipment including biggies like wheelchairs and an electric Hoyer.

-          One of the ways ALS liked to make their lives miserable was by making sure that Scott had too much saliva, and then had incredible difficulty swallowing it. The breaking point one day when we had to use the suction machine every 5 minutes. Neither of them could relax, and Gretchen ended up in tears by lunchtime. Botox was recommended to help with his salivary glands, and when Gretchen called for an appointment, they said he could be seen in 4 months. They were unsure if  Scott had 4 months left to live, and couldn’t imagine having to continue in this manner. ALS United intervened and helped get an appointment the following week.

-          When the clenching in Scott’s jaw got so bad that he cracked a piece of his tooth off, ALS United was there to help and answered all of Gretchen’s frantic emails.

-          Learning about hospice care and finding the right one was easier because they walked them through everything.

Our team as grown from just Gretchen and Calvin in 2022! Calvin got married in 2023 and his lovely wife Megan is our newest member, and running her first marathon!

Pondering where our team name came from? Scott and Gretchen are both Deadheads, and my, what a long strange trip it’s been.