BENEFITING: ALS IN WONDERLAND Foundation
“Ken is one of the most positive people I have ever met! No matter what is going on, he always finds the good in the situation. When I grow up, i want to be just like him!” Ken and I had been friends for a few years before we began dating. It didn’t take long to realize that he was The One, and we were married on February 3, 2012. Ken has always been such an outgoing person with an amazing personality. Ken learned to play guitar as a child and started playing for money at 14 years old. He has been blessed with an amazing talent and I have been blessed to watch him perform and do what he loves so very much..
In October 1989, Ken was involved in a one-vehicle car accident. He had a very hard road to recover and he had to relearn to walk, talk and play guitar. He had also been into drugs and alcohol for a number of years before the accident. This December, he will celebrate 26 years of sobriety! In 2013, Ken started having increased leg and back problems so we went to his doctor to find out the cause. We both thought these were problems originating from the car accident. His primary care doctor referred us to neurosurgery. In 2014, Ken underwent another back surgery to try to alleviate the symptoms.
After a few weeks the signs and symptoms returned and then he began to notice tingling and decreased griping in his left hand. Ken had a previous carpal tunnel surgery and he thought the problem had returned, so in Spring 2014 Ken had another carpal tunnel surgery. His hand got better initially but then the symptoms returned and continued to progress. Our neurologist ran more tests, MRI’s and EEG’s, Ken underwent physical therapy for almost a year. Finally we were referred to UAMS to see an ALS specialist to confirm the diagnosis. That official diagnosis was made on March 6, 2016, a little over a year and a half after symptoms started. Currently, Ken is wheelchair bound, he relies on a Trilogy machine at night and a large part of the day to help him breathe and now also has a feeding tube. He can still speak and has some upper body strength, but no fine motor movement in his hands. He depends on us about 90% of his care.
Our family has been blessed with a wheelchair accessible van, although it has been in and out of the shop several times which unfortunately has been very costly for us. I am not currently working and we have 9 children between us, two of which live with us full time. Ken’s medical coverage, Medicare, does help tremendously, but unfortunately does not pay for everything. With bills constantly stacking up and us not being able to afford all of the necessary items for him, it has become very stressful.
We are in desperate need to get our Wheelchair Accessible Van fixed so that Ken will be able to become more mobile, in hope to attend important appointments and continue making his NA meetings. With that he will continue to get healthier, not just physically, but mentally and socially as well. Thank You In Advance, Mrs. LeeAnn Bost