I read the blog of a man named Ray who was diagnosed in December 2014 with ALS. Ray's first blog post begins with him preparing for a bike ride across the country, which is a dream he had always had. Before the doctor had diagnosed him with ALS, Ray said that he and his wife (also named Rae) had a feeling it was ALS; this is because all other diseases had been ruled out. Ray first noticed subtle changes in his voice the summer before his diagnosis, but he just ignored it. When he began having difficulty playing the guitar, he decided it was time to find out what was going on. Ray was a big family man; his wife, 3 children, grandson Jack, and friends were the most important part of his life. Ray was also a midwife and loved his work. By September 2015, Ray could barely raise his left arm high enough to reach his guitar's neck. There was only one finger on his left hand he had control over. Ray was extremely active; he wrote that he had done 100 push-ups every morning since his early 20's. Ray also loved to cycle; he estimated that he put between 5,000 and 8,000 miles on his bike every year. Riding a bike was like meditation to him.
In order to prepare him for his bike ride across the country, Ray has some modifications done to help him on his ride. All of his muscles are fasciculation, so he found it harder to ride his bike. Students created wrist and thumb braces to give his left hand stability and keep it from falling off the bike handle. Ray's neck muscles are also weakening, so he used an adjustable head and neck support that clipped on and off as needed to his riding shorts. Ray wanted to use his ride across the U.S. to raise awareness for ALS. Ten months after his diagnosis, Ray got to do the ride of his dreams. While riding through Arizona, Ray hit a curb while riding at a high speed. He fractured 3 vertebrae, 3 ribs, and his humerus; he also had a concussion and a pneumothorax. Unfortunately, Ray did not get to finish his ride, so he asked people to ride and donate the miles he wasn't able to ride and called it "Ride for Ray."
By December 2015, Ray's wife was noticing significant changes in his voice. He had more trouble eating, and it bothered him that he was always the last person to finish his meal. Ray also had trouble dressing himself and was getting used to letting other people help him get dressed. Ray thinks that being physically active does not dictate the speed of progression of ALS. Ray rode his bike in hopes that it would help his lungs because his respiratory capacity was significantly diminished. Ray is reluctant to use a voice machine because he feels that if he lets go of his voice, it would be gone forever. Ray received a trike to ride around in, which still gave him freedom but more safety.
In March 2016, the only thing ALS had not affected was Ray's ability to sleep. When he eats he uses chopsticks to get the food to the right side of his mouth where he can chew it. His main form of communication during this time was texting until he got his "eye-gaze" tracking computer set up. By April, Ray's weight was down to 127 lbs. because of his difficulty with swallowing. In May 2016, Ray had a lot of difficulties breathing at night, his gait was becoming more uneven, and he started using a BiPAP machine to help him breathe. Ray wrote that each day was getting harder, and he entered hospice care at the end of May. Ray's last post was one he wrote to be published upon his death. He died in August 2016 from respiratory failure.
I enjoyed reading Ray's blog. He never lost his sense of humor and bravely faced ALS. Ray shared so many stories of his life, and I really enjoyed reading those. Ray said that getting the diagnosis of ALS was a really lonely moment for him; he felt separated from everything and everyone. I can not imagine getting news like that, and being able to read about the emotions he felt is something I will carry with me. From pictures Ray posted on his blog, you could see how fast the disease was progressing and how much weight loss he had. Ray's main priorities were growing old with his wife, being there for his kids, and having his grandson have memories of him. Ray wanted to live whatever time he had left to the fullest. As OT's, it is important that we realize what is important to the client and help them achieve their goals and dreams. Ray said that we can't change our problems, but we can change how we face our problems. Ray faced ALS so bravely, and his story is one I won't forget. I would highly recommend reading his blog to see what it is like for someone living with ALS.
Link to his blog: https://rayslittleride.com/category/my-blog/
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