Its been a couple of days since I posted anything. Susie has been sick with what sounds like bronchitis, and has been feeling miserable, so we have just hung around the hotel room and tried to relaxed. Yesterday I had my final MRI, it lasted about 2 an a half hours. This means remaining immobile while they scanned my body, since I have spent years in front of a television not moving this was the easiest part of all my weeklong procedures.
I will share the wrestling match I had with my insurance company getting approval for the MRI, it’s not every interesting, but it is therapy for me. It started off with the best minds in neurology at the Mayo Clinic saying that I need an MRI. It then goes to my insurance company, they stated that I needed to get approval from them before they were going to pay, and actually they were not going to decide they prefer to farm this work out to a third party, and a nurse in a cubicle or a doctor in an adjoining cubicle look over they request and are the final authority if you will get this test or not. Oh and by the way, we are going to take our sweet time about it because even though this is a life threatening condition and has been tormenting you and your wife for months we don’t care. We are going to treat you with no more compassion than the DMV and read verbatim from the customer service manual that was written by an accountant. We are going to say things like, “We have 24 hours to review your case before we make a decision” or “There are lots of other people ahead of you.” or “You will need to get your Doctor to call us.” and my favorite robotic-mind fucking-souless-babble “Is there anything else I can help you with today.”
Yes there is, I pray that one day you are sitting on the phone with my condition, and someone like you is sitting on the other end of the phone reciting the same exact words you are saying to me. I think that is the only way you would have any understanding of how helpless, powerless and frustrating this medical system can make you feel at times.
The system is so broken I am calling it the Humpty Dumpty experience.
On the bright side the Mayo Clinic is awesome, the people are wonderful, kind and caring. It has been an outstanding experience and I cannot say enough good things about them. I am grateful to be living so close that Susie and I can drive and that we live so close to the KU Med.
Susie and I meet with the Neurologist this afternoon and he will be going over all the tests and sharing his findings and final thoughts. I will update you tomorrow once we get back into Kansas City.
Susie has put together a summary of today. It is very good news. See below
He’s gone through the ringer of tests here at Mayo and the doctor said that while it might be early ALS, there is a currently a greater chance that it is either his ulnar nerve getting pinched / having a cyst, etc or that it is multifocal motor neuropathy which I think also involves an infection and they use IVIG to help it. He goes in tomorrow for an MRI of his arm and on monday for an mri of his head/neck/etc. and then we meet with the doctor on Tuesday. Hopefully will have some more info then.
I started the tests at 1:30 pm and got done about 4:30 pm. yesterday. There are two parts to the test, the first is that they shock you with electricity. They start off low and then increase the voltage or amps, I don’t know the difference between the two to just below electric fence or knife in a toaster. It’s a good jolt and can make your body jump.
The second part of the test is sticking needles in your nerves and grinding it around while looking at a screen. This hurts like hell, if you want to know what it feels like ask a friend to get a sewing needle stick it anywhere in you arm, preferably a nerve but anywhere will do and then ask them to grind it around. I had this done to me for about an hour.
The final part of the exam was, yes you guessed it, they stuck a needle in my tongue! They had been telling me that they were going to be doing this the entire test. I guess they were thinking I should know right from the start. I have some news for them, you can wait to tell me that you are going to have stick a needle in my tongue right up until the moment you actually have to do it not three hours before, make it a surprise. I am just saying….
So what did they find? You have three major nerves in your arm apparently, the radial, median and ulnar. Who would have guessed? My radial and median are fine and my ulnar nerve has some problems. The good news is that my tongue nerve is fine the bad news is that a tongue bend is often the first indication that something bad is going on.
I have an appointment with a physical therapist this afternoon and then will learn more tomorrow when Susie and I meet with Dr. Crum and Dr. Smith.
Oh yes we found dog pooh in our room behind the TV. I love this hotel its just like home.
This morning we went to Mayo and meet with Dr. Smith and she asked a series of questions and did some tests and then Dr. Crum joined her and repeated a lot of what she had done earlier. They both said that I had retained much of my strength and the tongue was a concern. They wanted to do some more blood work so Susie and I went over to the Hilton building and they drew some blood, the tests should be back in about 4 hours. This afternoon I am going to repeat the EMG
test part of is the nerve conduction test where they shock me for a while. Tomorrow there is more testing and I am meeting with some physical and speech therapists.
Everything else is going well, I am happy. Nat has suggested that I exploit my condition in the unexplored area of ALS humor. He said it would seem more authentic coming from me. I love his gallows humor and I told him I was coming back as a Zombie and recommended that nobody stand to close to my coffin at the viewing.
Mayo is awesome, everyone here is so kind and nice and the complex is huge. They have given us a beeper each time we had to wait. It is kind of like Applebees but a little more somber.
I don’t know what is says about be but seeing all these sick people in wheelchairs makes feel better and worse at the same time. It is going to be nice to meet other people that have ALS just to hear how they are doing and to listen to their stories. This will get setup on April 27th. Nothing has changed and Susie and I are just talking this one step at a time
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.
I am grateful for what I have today.
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
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