Help us raise money to find a cure for ALS!
|Event:||Des Moines Walk|
|Date:||Saturday, October 3, 2020|
My husband, Gary Norton, was diagnosed with ALS in August of 2019 at the age of 66. Prior to his diagnosis he was working full time as an attorney and trying to decide when to retire and how to fill the time during his retirement years with golf, travel and the sports he loved, but also with something else where he could still be a contributing member of society. He knew there was a problem with his voice and had been seeking an answer for the problem through various tests since November of 2018 when he had to drop out of his church choir since he was no longer able to sing. He had sung in choirs since his high school days and was often a soloist and was very saddened to not be able to participate in his church choir, a big segment of his church family. His ability to enjoy singing was the first thing to go. His voice problem kept progressing to the point where his speaking ability was affected as well and for an attorney that makes it hard to function. The ALS diagnosis in August finally provided him the answer to his problem, but it was not the answer he was hoping for.
His life changed almost immediately as he was forced to go on disability one month later to start putting his life in order. He was given a life expectancy of 2-5 years so he needed to spend it wisely. He no longer could dream how to spend his retirement years. He thought first of his family and wanted to make sure I was well taken care of. He wanted to spend quality time with his two sons and one daughter and his grandchildren – one grandson and one granddaughter, but soon to be two grandsons and two granddaughters. And he was concerned about his disabled mother in a nursing home. Her care was his responsibility since he was the oldest of her four sons and her power of attorney. He did not share with her the news of his illness. She was hard of hearing and couldn’t speak so if she had questions about his voice, we never knew. He was just progressing to needing a cane in March when Covid-19 hit and visits to the nursing home were no longer allowed. With limited contact from her sons, her health began to decline and she passed away at the end of June, unaware her oldest son had ALS.
Gary kept trying to stay active in the spring by getting out to enjoy a round of golf, something he dearly loved. I chose to go with him to eliminate some of the walking and steady him when he swung. But by mid-May his balance was so unsteady that his ability to enjoy golf was no longer possible – another big loss. He transitioned to a walker in late May but only after suffering a fall that landed him in the hospital with a large gash on the back of his head, a concussion and severe dizziness that needed therapy to correct. This was followed by another fall in mid-June and then came the death of his mother.
By that time Gary’s speech was becoming so unintelligible that we purchased a speech tablet so he could type what he wanted to say and the computer would speak it for him. His ability to have a normal conversation or a phone call was another big loss. I could still understand him most of the time so I became his interpreter. By July his doctor recommended a feeding tube and said we needed to start the process to purchase a power wheelchair, which takes at least three months. He did not relish the thought of a feeding tube, but his ability to enjoy food was being overridden by his inability to swallow, so another enjoyment was being taken away from him. He had the feeding tube surgery in mid-August and shortly after that the ALS Association loaned him a power wheelchair so that he could get around the house and around the block while his personal wheelchair was being built to order. But he no longer has the ability to take his car out for a drive or go into other people’s houses - another loss of another enjoyment.
I have brought you to the present where each day he faces a new challenge – can I roll over in bed?, can I cough strongly enough to clear my throat when it is clogged with saliva?, can I still stand up with help? His body is quickly “melting” as he puts it but he has not given up. He is a fighter, a former college wrestler, a grappler if you will. He wants to conquer this illness and spend as much time as possible with his family and friends. We truly appreciate the dramatic response we have received from family and friends who are thinking of and praying for us daily on this journey. We know we are not alone. I hope you will join us in the fight to conquer this illness that robs one of so many enjoyments and of life.