I received my MRI results the week of Thanksgiving, 2011. The clean MRI showed that I did not have a tumor or any kind of stroke. Both of those can affect speech so I was feeling pretty good. I had yet another follow up visit with Dr. Butler (the ENT). He asked me if I had an appointment set with a neurologist. I explained with a smile that I had an MRI and that my brain looked much younger than a guy my age, so, no worries. His response was different than I expected. He told me that there are a lot of neurological problems that can affect speech that would not appear on an MRI. Again, he instructed me to get an appointment with a neurologist and to do it NOW.
Well, everyone knows that you don't just call the neurologist on the corner and get an appointment for tomorrow morning. These are busy people. It takes time. I was going to have to wait several weeks to see Dr. Banks, the neurologist that Dr. Hansen wanted me to see. I had heard good things about Dr. Banks, so I decided it was worth the wait. But it was now early December and the earliest appointment I could get was January 23rd.
Meanwhile, I started noticing some other things going on. I started experiencing muscle twitches in different parts of my body. Everyone has felt muscle twitches and knows what those feel like. But, this was different. I was having a LOT of twitches, and not just in one place. These were head to toe. At times it felt like there were tiny woodland creatures crawling around under my skin. Still, I was more curious than concerned, so I started looking on the Internet, trying to see what things could cause speech problems and muscle twitching.
Try this some time: Open up Google and type in "slurred speech muscle twitches" and see what you get. The first thing that is listed is ALS. So naturally you want to keep looking, right? No one wants to see ALS. So I created a list of different conditions that had the same symptoms. None of them looked very "fun." But if I had to choose, ALS was not on the top of the list.
Now the wait was on. I had my slurred speech, my twitches, a list of ailments from Google, and a few weeks to kill. So I spent the holidays speaking as though I had been enjoying the holidays a little too much for a Mormon boy, and twitching up a mini storm. These things didn't prevent me from having nice holidays and continuing my work at the University of Utah, but hey, if you want to be constantly reminded that something might be wrong, have someone shoot novocaine into your tongue and then poke you lightly all over your body 24x7.
http://www.alsa.org/about-als/symptoms.html
My name is Kevin Taylor. I live in Draper, Utah with my sweet wife, Gerrí. We have been married for 41 years. I'm 64 and healthy in every way with one exception. I have Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's Disease. I was diagnosed with ALS in May, 2012. It seems like this might be a good way to share my experience with family and friends. I'm calling this blog "Kevin LIVES with ALS" because that is what I intend to do.
Kevy B., if anyone can do it, you can. I'm still around annoying people after a year of 3 near deaths. Wish I could say I was better and wiser for it, but maybe I am more compassionate. You were a cute boy, but I can tell you are a strong man with a dear wife to help you.
ReplyDeleteKevin,
ReplyDeleteLong time, no talk. So sorry to learn of your ALS. That sucks. I can't imagine how you feel although I picked up some of it from your initial comments. Keep 'em coming, though. Take care as best as you can.
Chris Roberts
Hi Kevin and Gerri.
ReplyDeleteI wanted to send you my love and thank you for being willing to share what has got to be one of the most difficult trials to go through. You two have been like a second "bob" and dad to me during one of the most awkward times of life...the teenage years. Thank you for always inspiring me to be a better person...even if it had to include picking my nose. I would love to stop by sometime and introduce you to my family.
May God bless and sustain you and your family as you continue to adjust and LIVE.
Much Love,
Lisa Lisa
Dad, I'm so glad you are documenting this. Love you so much.
ReplyDelete