I have ALS but like most ALS patients it took quite a while to get that diagnosis. I did not realize how much shallower my breathing was at night compared to during the day and I nearly died before figuring out that during my sleep I was barely breathing at all. This is the story of my journey.
I was healthy my whole life although overweight and at times clinically obese. But I never stopped dancing, swimming, gardening and running. I was a healthy, heavy person. I had a career as a polymer scientist and a chemist but I don’t think my exposure to chemicals caused my disease.
ALS is mysterious, but I subscribe to the theory that many cases of ALS are caused by a bacterial neurotoxin BMAA. You can read about that in another blog post.
Shortly after my son was born, in September of 2013, I started being short of breath and I lost quite a bit of strength. The loss of strength was so severe that I did not trust myself to carry my infant son down the steps. During the winter of 2013/2014, I would take him for walks in his stroller, but his mom had to bring him down and put him in the stroller for me.
I noticed that I could not sleep on my back and had to sleep on my side. I visited the doctor quite a few times during that time but did not receive any diagnosis until March 2014, when an infectious disease specialist detected that I had a very recent cytomegalovirus infection. He thought that it had caused a case of mononucleosis and told me he thought it would clear up on its own.
I did not realize that while I was asleep my breathing was extremely shallow… But I did know that I was having trouble with breathing as I fell asleep.
I got a job as Vice President of R&D for Alevo, a company that was developing unique lithium-ion batteries primarily used for grid support. They needed one of my inventions, the Ballistic Breaker and as a result, I got 2 million dollars worth of startup stock in that company in return for assigning my rights to the Ballistic Breaker and another invention. Alevo later went bankrupt and my stock is now worthless… and my patent rights in both the Ballistic Breaker and the elpipe were sold off.
I was quite ill by the time that I reached an agreement with Alevo on the employment terms and transfer of intellectual property. The founder of the company Jostein Eikeland allowed me to work from home on the patents and during that time I went to visit two of my sisters and one brother in Oregon.
My sisters and brother noticed that I had low energy. After Carol left to drive home, Cheryl and Donald noticed my fingernails were turning blue. It was the evening of Memorial Day and after I went to bed the two of them decided that I had to go to the emergency room. They pulled me out of bed and took me to the ER. I am certain that that saved my life.
When we arrived at the emergency room, I said I was having a hard time breathing. They took me right in, ahead of everyone else, and the next thing I knew I was talking to a doctor at 4:00 AM in a hazy fog, just before they admitted me to intensive care.
After that, I was unconscious for a long time. When I woke up, my sister Cheryl was sitting in the chair beside my bed. I told her at the time that I had seen our dead mother who said that I had to come back because I had work not yet finished. I don’t actually remember that, but I talked to Cheryl about it at the time, and she told me about it later. It’s one of those experiences that faded quickly from my memory. Maybe it was designed to do that.
When I woke up I had a breathing tube that went down my nose and into my trachea. They took that out pretty quickly after I awoke from my coma. I don’t remember exactly what kind of breathing support I had after they took out the endotracheal tube.
I was in intensive care for a week and then a few more days in the hospital before I got out.
When I got out I got my first home-based breathing support machine which was a BiPAP machine. I used that for quite a while, for about 18 months until I was diagnosed with ALS.
They did not diagnose me with ALS during my hospital stay in Eugene Oregon. ALS is a diagnosis of elimination and at that point, my nerve conduction velocity was still above the clinical criteria for ALS. The doctors at the time thought I had myasthenia gravis.
Ventilators saved my life. As soon as I started breathing well through the night my energy level came back up. I wasn’t able to exercise vigorously but I could at least go for walks and do yoga classes. Sometimes I had to pause on the steps going up to the yoga studio though.
About 18 months after my hospitalization in Eugene Oregon, on one of my regular visits to my pulmonologist in Charlotte North Carolina, he scheduled me for a visit with the neurologist. That’s when my ALS was diagnosed on August 17th, 2015. That was a real life-changing experience.
After I was diagnosed with ALS, the doctors moved me over to the Philips Respironics Trilogy 100 ventilator which has been the type of ventilator I use ever since. The Trilogy 100 is a positive pressure ventilator, meaning that I always have to have something in my mouth, my nose, or covering my whole face to breathe.
I feel very lucky in that ALS has not compromised my ability to speak and swallow. My facial muscles work as well. I express a lot of my feelings through facial expression. When one is breathing with conventional positive pressure ventilators that avenue of communication is inhibited.
I am an accomplished inventor and began to focus on ventilation equipment after my ALS diagnosis. I’ve made my living doing research my whole life, so it was natural when I was living on ventilators to think about how to make them better.
The concept for the conformal vest ventilator came to me sometime in early 2016. I envisioned something that would not require me to have hardware sticking in my face. It bothered me quite a bit that the first thing people notice about me was the fact that I’m living on a ventilator.