I was walking through the Indy airport and saw her book. Very exciting.
It’s Saturday morning and I woke and with a sinus or what I think is a sinus headache. I had been hoping that is would just resolve itself, but this has not proven to be the case, so I have taken some action to get this thing under control.
I used a Neti pot to clear everything out, it’s the most awesome device for dealing with sinuses, I put some Vicks in my nose and took a couple of Advil and a cup of coffee. The coffee is for the soul, and it not part of the campaign against my sinuses. I like using military terms when talking about my overall health it makes it sound so much more, I don’t know… urgent.
I am continuing to battle with fatigue and am sleeping a lot and taking naps. I either have fatigue or I am transforming into a cat. I eat, sleep, look at stuff and walk around like I own the world and am master of my domain. The metamorphism has started. I hope I get a tail.
Susie and I volunteer at the Pit Bull rescue, and it was our first time doing it solo. We are a great team and rocked everything out like a BOSS, then it was off to see a friends Art show. Actually Donald (Scribe) and Alisa had two shows. Donald’s was upstairs and Alisa’a was downstairs.
Each show was wonderful, and Susie purchased a drawing of Donald’s. I think is maybe the best birthday present ever. I think might go back and get a piece of Alisa’s, there was something of hers that I just loved.
Phyiscal therapy is going well. I am squeezing and bending stuff to try and get my left hand stronger and I just need to be patience.
For everyone that has been wondering about the state of my bottom. It is doing well, I followed the advise of my Aunt and the probiotics she recommended had been doing their magic. So the itch that would never die has been replaced my the crackling headache from hell. Seems like a fair trade since on like to have diversity in my malady’s.
I am grateful for both, because that means I am alive and kicking. Death makes you grateful for everything.
Now I will return to the mundance, Susie and I ate dinner at Fric and Frac’s. They have a weekly Friday night special of KC steak. Yum and then off to Miami Ice for ice cream. Ice Cream is my weakness and somehow fills that small hole of longing inside of me.
We finally saw Mission Impossible and enjoyed a romp through the improbable and outlandish.
Today the agenda is open. Susie is sleeping and all the animals have been feed. Tranquillity covers us like a blanket. I have no new symptoms to report and the Vick’s is doing its job.
Last Monday I had a follow-up appointment with my neurologist Dr. McVey. She is the KU Medical doctor that I have been seeing. Susie and I reviewed with her what has been going on, and we looked over the test results from Mayo again.
The good news is that I have no new symptoms, accept the ones that can be explained by the surgery. My index finger and middle finger have lost some strength, which might just be normal, and I continue to have pins and needles in my left hand and arm. It might take as long as two years for this to heal up.
I am going to do some physiotherapy with the arm and this should bring back some strength. So here is the bottom line. If I have no new symptoms in the next five to six months I am out of the woods.
I gave Dr. McVey a big hug, and that’s unusual for me because I am not a big hugger. I figured she needed a hug because she told me I was dying and while I am dying it is at a much slower rate they she predicted.
A few take a ways I learnt from this experience.
1. People are much nicer to you when they think you are dying.
2. Diet and exercise doesn’t seem as important as having an ice cream.
3. Shit just doesn’t matter.
4. I better be present in this life because one day it going to end and I should enjoy the ride.
This week I finished Jenny Lawson’s book Furiously Happy and it’s a recommended read if you think you are bat-shit crazy. Normal people can read it too.
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.
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
Last week my wife shared a story she was reading on Facebook posted by a person in our neighborhood. It was about Rodger their cat and how it had gotten loose again. I was half listening, because cats and the Internet was not exactly breaking news. It was the “Again” part of the story that caught my interest. “Again” I asked. Apparently they cannot keep their cat in the house, it is such a force of nature that even though they close the windows and lock the doors Rodger breaks free.
They asked if anyone had seen him. In a later post a neighbor had reported that they had found Rodger sleeping in their dog house, but didn’t have the upper body strength to carry him back. They tried to put a kitty collar round his neck but it wouldn’t fit and they then tried a small dog harness, but he had managed to break free and destroyed it in the process. I was thinking shackles and a straight jacket might do the trick. I hadn’t pictured this feline Houdini as an over-sized Garfield.
They reported later that after feeding him a can of cat food he had calmed down a bit, and with her husband’s help had managed to lift him into their son’s radio flyer and would be returning him shortly. Rodger, tummy full seemed to be quite content to be trundled home.
I look down at my two cats and am glad they can’t read, a neighborhood only needs one Rodger.