Over the next few months there was a gradual deterioration of Sean's condition. He was falling frequently. His sense of smell was gone. There were slight tremors in his hands. When he was falling asleep, his arms and legs would jerk and twitch, sometimes continuing throughout the night.
Sean's vision continued to worsen. He had almost no night vision and was extremely sensitive to bright lights. He had nystagmus, an involuntary rhythmic shaking or wobbling of the eyes. He had double vision starting at 60 degrees peripherally.
We travelled to Yankton, SD to the American Pain Relief Institute where Sean received radio frequency treatment for his chronic neck and headache. While he had some relief intitially, the effects were short-lived.
Sean was losing sensation in his hands and feet. While working on the house, he cut his thumb to the bone with a table saw. He did not feel the cut, but stopped when he saw blood. The ER doctor was able to put in eight stitches without any anesthetic.
An electomyography (EMG) test was done to measure how the nerves in his arms and legs were working. The test determined that the nerves were working properly. The lack of sensation was caused by either the message not travelling to the brain from the nerves, or the brain misinterpreting the message.
Despite the diagnoses and the extensive research I had done, I was still confused by it all. These changes in my husband were frustrating for all of us. He would ask, "Why did this happen?" "Why can't I do things like I used to?" I felt lost with all the changes. I didn't know how to help him. I didn't know how to explain it all to our children. I didn't know how to deal with the changes myself. Although we had been dealing with changes in one form or another for over two years, this was new and frightening territory.