Yesterday I talked to Mum on the phone. Susie and I were in the Paris casino and I stepped outside to do face time. Susie has been struggling with our accountant to get our taxes calculated correctly. They are telling us we owe thousands and thousands of dollars, which is a mistake. It is the last thing we need at the moment and is adding an additional stress to our lives that already seem like they are bursting at the stems.
As I deal with the possibility of ALS it is a matter of resilience, how can I get through the low moments, the moments of fear, the reality that I will lose all control of my body and be dependent on Susie for everything. We were talking at breakfast the other morning and it was so good to eat and orange and facing a future were I might be eating through a feeding tube and never get to eat an orange again can be a depressing thought. The only way I can cope is to enjoy that moment and the orange that I am eating. I don’t take this for granted and having this slowly not become possible seems like a living hell. This is where fear of the unknown and all the horrors and indignity reside. These fears emerge from the depths and terrorize me. I still have hope that I will dodge this disease but in reality I know this is delusional. I have not given up hope, but I am preparing myself to live in a different kind of way. I have start reading “Fear” my Thicht Nhat Han and it gives me comfort and an understanding of fear.
Susie and I are flying out of Vegas this morning, we leave at 7 am and then arrive home pack again and then drive to Rochester Minn. tomorrow. It’s about a six hour drive through Iowa and then the testing starts on Tuesday morning at 7:30 am and goes through the day and then continues Wednesday. I will try and give everyone an update on the results.
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