Not an ALS update

My Aunt asked me to give a general update on how I’m doing, and normally I try to write something informative and positive, but I’m kind of “SCREW THAT” I’m feeling shitty, my left hand seems to be getting weaker. I am tired most of the time and sometimes I am blind with tiredness. I become so exhausted that just want to lay and not get up.

Last night Susie asked me to get her some water and I said no, and then walked upstairs and fell asleep in my clothes. I woke up 12 hours later. I get irritable, not the normal kind of irritable but the type that I would describe as stabby, mean and nasty kind of irritable. The kind you have to apologize for the next day, it’s embarrassing.

Boomer (our dog) shit in the kitchen this morning. Actually a decoy shit because he had shit again on a brown rug that I didn’t see and stepped in. It was such a huge poo that it went over the edge of my Birkenstocks. He’s a good boy, but it was a hard way to wake up. Everything is cleaned up and I am airing out the house.

My throat is sore and my tongue still deviates to the left. My voice is hoarse and in the back of my mind I am terrified that my next symptom might be the loss of my voice.

There are days I wake where my whole body aches, and then there are days I wake feeling just fine. It’s not exercise related, it just appears to be random. I once was so fit, now there are days when walking up the stair just hurts.

My left arm twitches constantly, the nerve is always firing in my forearm. It has become so constant that I don’t notice it anymore. I have constant pins and needles in my left hand and my arm aches and hurts like hell if I bump my elbow, which I do constantly.

My lower intestines have revolted and it is as if someone has rubbed my anus with poison ivy. It might be related to my change in diet or something else like stress. Who knows what the cause is but what I do know is that I can’t walk around scratching my ass all the time.

So today I feel low in body, mind, and spirit and all I want to do is eat ice cream.

As I go through this process of waiting to see if another symptom might emerge to help with the diagnosis there are days I feel fine and I think it is all behind me and there are days like today where I feel there is a sickness lurking inside me like an inky shadow.

ALS May 24th 2015

ALS Diary May 24, 2015

Today Susie and I are packing to go back up to Mayo for testing. I am scheduled to do another EMG test on Tuesday morning at 8:00 am. This is the third time that I have taken the test. I woke this morning and yesterday morning anxious and depressed knowing what the test entails. The test is long and painful, and it’s always uncertain what they might find. Last time they found a problem with the ulnar nerve, and hopefully the test results remain the same.

Susie and I will be meeting with the neuro surgeon and my neurologist to talk about the options with my arm. We are not sure what they might recommend, but we are both concerned that they are focusing only on this one area without taking into consideration the totality of the symptoms. This is a common trait with doctors, and we both want to make sure that we take time to consider all of my options and symptoms.

The other treatment that is available is called IVIG, the link is belong if you are interested in the medical details. (http://en.wikipedia.org/wiki/Intravenous_immunoglobulin)

Work has been extraordinarily stressful over the last week and it has exacerbated my symptoms, especially in the evening and during the night. I am very fatigued at the moment and during the weekend I have very little energy to do anything. Susie has been wonderful letting just veg on the couch.

Home is a sanctuary for me; I am reluctant to go out unless we have something planned. Home is where I can restore, relax and recover.
I wanted to tell you how grateful for everyone’s kind words and positive thoughts. I feel supported loved. I am grateful for my health. The trick for me is to stay in the present moment, and to take this process one day at a time.

ALS May 2nd 2015

May 2nd ALS update

This week I had an appointment with my new cardiologist. The reason for the change is that my last doctor was of the opinion I needed to take a statin and move on. One of the rare side effects of the medicine that I was taking is muscle atrophy, and since this is what I have going on in my left hand it made sense for me to stop taking this medication.

Dr. O’Keefe is a research cardiologist, I guess that means that he conducts studies and writes papers as well as his regular practice. Susie and I explain where I was health wise, and share with him that since I had gone off the heart medication my cholesterol has rocketed to 356 it was 149. He looked at my CT scan that looks at the calcium build up in the heart and my level is high, but did not seemed to give him much concern.

He was overall looking at the inflammation in my body and wanted to control that first before putting me back on medication. What he has suggested, was to go on the paleo diet. The rational is that we should eat more like what people ate 2.5 million years rather than how we have eaten for the last 10,000 years and more specifically how we are eating in the 21st century. Logically this makes a certain amount of sense, and I am open to try anything if it might help my condition.

So I started the diet about 4 days ago. I have lost 3 pounds which is weird and I feel really good. I think the twitching is reduced and my overall well being has improved dramatically. The diet is pretty simple and not to exciting, but how exciting was eating 2.5 million years ago?

Things I don’t eat are grains, flour, legumes or anything processed of packaged. What I do eat is nuts, fruit, vegetables, meat and fish. What is strange is if I follow the mantra “If man made it then don’t eat it.” the grocery store becomes very, very small.

Dr. O’Keefe has done a Ted talk that is worth checking out and the other Ted talk he recommended that I watch was by Dr. Wahl. She is a doctor that was diagnosed with MS and she gives a talk about her journey and how she finally decided to treat herself. They both can be found on Youtube and are worth the 18 minute time commitment.

So that’s the update. Not to much else to report. As I learn more I will let you know.

ALS April 14th

4.14.2015

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.

ALS April 7th

4.7.2015

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

ALS April 5th 2015

4.5.2015

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.

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