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ALS Awareness Month 2021 Member Spotlight: John Sprague
Hello Everyone! Here is another member spotlight – – today John Sprague shares his ALS story with us. We thank John and everyone who have submitted their stories for our ALS awareness month project. These will continue to be featured every Monday in May. Be sure to look for announcements about additional member events that will also be happening this month.
“The Road to Diagnosis” by John Sprague
I injured my back in 1979, went years in pain, and learned to deal with it. It got worse by 2014, and I finally saw a doctor and was referred to therapy. Therapy gave me a contraindicated exercise, and it damaged my L4/L5 nerves in my left leg, resulting in foot drop. By March 2015, I started getting fasciculations in my left calf. By July, it was diagnosed as Benign Fasciculation Syndrome. In December 2015, I had surgery, and the symptoms were supposed to go away, but they didn’t. My brother died in January 2016 from bulbar ALS. It took him just over three months from his diagnosis.
By March 2017, fasciculation had spread to my right leg and left arm. Neuro at VA gave me eight different types of pills to “fix” it. Six months later, I went to a non-VA Neuro. From September 2017 through October 2019, the non-VA Neuro watched and poked while the fasciculations spread to my face and torso, and my left leg started losing muscle. Then doctors said I had cervical myelopathy restricting my spinal cord at the end of 2018, and after that surgery, nothing changed, but weakness in my shoulder and arm began. On October 3, 2019, I was diagnosed with ALS. The VA still has not taken the steps that they need to document my condition, and that is an ongoing fight.
I cannot run, jump, or walk far. I get so exhausted, but I can walk. I go to the store and do OK with a cart for a short time but must sit down halfway through shopping. My spouse is an angel, and she helps where she can. My condition is asymmetric, and the right side is much stronger than my left. I can still drive, which makes my day. I am lucky this process has been very slow.
I have started to have swallowing and breathing issues, but they are minor so far. My voice is also getting very hoarse. I love to sing along with the radio, but that does not work out so well anymore. I have always been an optimist and find myself struggling with a positive outlook sometimes. I get a lot of comfort and knowledge on the ALS forums, which is a huge help. God is in charge now, and I am making the best of what I can while I can!
#ALSAwarenessMonth #StrengthinCommunity
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