Last week we watched GLEASON, the story of Steve Gleason, the New Orlean's Saints linebacker who is now in about the same stage of his ALS as Pat. We both cried because he and his wife are SO YOUNG..and they have a baby and it was not what either of them pictured for their life together. We had a chance to raise our girls and although Pat never hunted them through our pastures while riding his horse, we did have pretty good times, until the boys arrived and it mainly turned to worry. We're still having fun with the grandchildren, but we both know that this is the gravy on our lives.
Steve Gleason has started TEAM GLEASON with the motto NO WHITE FLAGS. This organization's task is to promote technology which Steve believes can replace many of the functions that nature has provided but ALS has removed from people.
We are big believers in this too, Pat's Permobile gets him around and the stairlift gets him to the upper levels of the house. He also is using a vent for breathing, a speech machine for talking, and a mechanical arm to help him eat his food and play wizard chess.
Steve's Team Gleason is SO ADAMANT about this that when Medicare didn't provide word processing/internet capable speech devices for patients, his group stepped in, gave them away and made it possible for those people to communicate again. The GLEASON ACT, which corrected this, was named for him.
https://www.govtrack.us/congress/bills/114/s984/text/es
http://www.teamgleason.org/letter2/
In the movie Steve and his wife struggle with the disease, caring for the son, reconciling with parents and trying to get this great organization started all the while Steve's condition is deteriorating. It is heartbreaking, but as much good work that they do together, from what I could see, they don't understand the importance of comfort. The movie is a relentless look at living with ALS and this is what takes me back to the Mitford girls.
The age of technology has replaced the age of comfort. Steve is a whiz at using his devices, his wife is a whiz at caring for him. They are a thoroughly modern couple but their bedroom needs an old fashioned hand to make it comfortable. I want to go down and help them organize their room to make it a safe, cozy place for them to visit at night when they are alone with the machines. I want to get Steve out of that hospital bed and into one of those platform beds that can help him sleep comfortably with his wife so that late at night they can lie down together, hold hands and pretend it is like it used to be. I want to get them nice dressers to hold all the trach supplies so they don't have to look at everything all the time and be constantly reminded of ALS. They have done so much for all of us who suffer with this. I want to do this for them. Because they could be our children and I want to help them.
https://www.tempurpedic.com/bases-and-foundations/
