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.

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.