ALS Part 1 2014 – April 4th

4.4.2015

Nat e-mailed me today and came up with the idea of blogging. Its a good way to let everyone know what’s going on. Last year I began to experience weakness in my left hand. I noticed it one day at the gym when I was trying to button the top button on my shirt. I was having trouble coordinating the movements. Around that time I also remember having trouble opening the back door with my left hand.

Another thing that was out of the ordinary was that I was twitching at night. I thought it might be due to muscle fatigue from some of the workouts I was doing at the gym. I could feel my body kind of charge up, it was like right before you sneeze. I got this feeling through my body and then I would uncontrollably twitch. Mostly it was my lower legs and I thought I might have restless leg syndrome and I was not to worried.

I think it was the end of October or maybe November I went for my annual checkup with Dr. Bautz and everything appeared to be normal. I mentioned the weakness in my left hand and he took a look. I do remember the look on his face, he seemed very concerned He noticed some muscle lose between my thumb and index finger. I thought it might be a pinched nerve. I had noticed that playing barr chords on the guitar was getting harder.

So Dr. Bautz scheduled a visit with an orthopedic specialist and a neurologist. I saw the neurologist first and then the orthopedist. Dr. Seifer did some tests and I appeared hyper reflexive in my legs. So she thought an EMG test would be in order and recommended that it might be a good idea for me to go to KU Medical. It was our 25 anniversary and we were going off to Italy and would gone for 3 weeks. We planned to go to KU Medical when we got back.

That would be in January. Susie has begun to do a lot of research so she really knew before I did what might be going on and on the cruise broke down and shared with me her concerns.
I remember we were sitting at dinner and both crying our eyes out. I couldn’t really process the information she was sharing and thought oh shit I hope I don’t have this disease.

When I got back there was a day’s worth of testing with Dr. McVey and her team. Before lunch she sat down with Susie and I and said that she was 95% sure it was ALS. I did more testing and the tests came back inconclusive. It was some nuero-muscular disease but it could be one that they could treat. She asked that I wait 3 months so the disease would declare itself.

About six weeks latter my throat had still been sore and I was looking at it in the mirror and I noticed my tongue was twisting to the left. This freaked me out and I showed Susie and she confirmed that yes it was pointing westward. Susie called or e-mailed Dr. McVey and I think we saw her on Tueday? It was the same night we were going to see John 5. I think March 17th but I would have to check. That was the day I got they diagnosis.

It was the worst and one of the best days of my life because I got to get on stage and play John’s guitar in front of a packed crowd at the Riot Room.

Here is the link, I play at about 11 minutes into the video

Leave a Reply

Your email address will not be published. Required fields are marked *