Beginning in January of 2006, I noticed a persistent cough. My primary care doctor dismissed this as unremarkable.
My fasciculations (muscle twitching) began in the spring of 2006, starting in my left shoulder. Again my primary care doctor found this unremarkable.
In early October of 2006, my speech suddenly became slurred and I experienced shortness of breath when speaking. I also noticed increased fatigue. When I went to my primary care doctor, he consulted with colleagues, and suspected it could be ALS.
In November of 2006, I traveled to Beth Israel Deaconess Hospital in Boston to consult with Dr. Elizabeth Raynor, a neurologist. She and her staff performed a battery of tests on me over the next couple of days: Electromyography (EMG) and Nerve Conduction Studies, Pulmonary Function, Arterial Blood Gases, Neurological, and others. From the results of those tests, they concluded that I probably had ALS.
When I returned to Maine in late November of 2006 I consulted with Dr. Sina Khasani of Neurology Associates of Eastern Maine. Upon further examination with MRI, X-rays, blood work, et cetera, he confirmed the diagnosis of ALS.
All of the doctors I consulted explained that there was no treatment for ALS. The average life expectancy is one to five years from onset of symptoms. The only FDA approved drug is Rilutek (generic Rilozole), which can add four months to the end of your life. I began using a sleep apnea machine at night to increase the levels of oxygen in my blood. I started taking not only Rilutek but also a variety of medications and herbal supplements to try to alleviate the array of symptoms. In search of hope and other possible ways to slow the decline, Jacqui and I spent hours doing research and talking to other people suffering from ALS. Despite all this, from November 2006 until April 2007 my symptoms continued to become more pronounced. The fascicultions in my left shoulder began spreading to other areas of my body, my speech deteriorated further, my legs continued to weaken, and I became even more fatigued.
I have always been proactive and a fierce fighter against what I viewed as injustices in society. I view ALS as an injustice. When I was told that I had to accept the outcome, that there were no treatments available in the U.S., I explored alternatives in order to fight this evil.
I searched for alternative treatments, but I could find no viable, research-supported treatments. What we did find in the United States were clinical trials to determine the causes of ALS, such as through gene research, and studies of stem cell treatment on mice and rats. Then in March 2007 my son, John, learned about Eden Laboratory in Belize, Central America. This was what my family and I were looking for a treatment center focusing on stem cell research, a method which seemed to provide the greatest future hope for the treatment of neurological diseases. In speaking with the doctors in charge of Eden, they provided us with the information we required to make an informed choice.
We realized the pioneering aspect of this treatment. We, (Jacqui, Jake, Johnny, Laurie, and myself) had a family meeting during Passover. When we factored in the pros and cons of moving forward with this alternative, it became apparent that it was the correct choice for us.