# 2 The Tale of an ALS Suvivor
A Sudden Decline
Within 30 days of my crying episode in the woods, after being frustrated with not being able to construct a home building kit, the grip in my hands started to fail. Slowly, I lost the strength in my arms. One day, I had to run for some reason but as I started to move, my legs curved outward and I could only wobble slowly.
That freaked me out.
I was only 55 and had never been in ill health. I didn’t smoke. I didn’t drink. I had been a vegan for years. With a perfect health record, I also had no insurance.
Let me go back to my youth. As a child, I was exposed to toxic levels of lead in my hometown of St. Louis, Missouri. Nowadays, state law mandates annual testing of all children ages six and younger in St. Louis, although only half get tested. The CDC lowered the definition of lead poisoning to 5 micrograms of lead per deciliter of blood after scientific evidence proved that children can suffer harm from even low-level concentrations of lead.
I know in retrospect why I had failed every grade in school. After I was born until the age of 4, I was exposed to toxic levels of lead in my environment. Despite the large population of children with lead poisoning in the city, there was never any connection made to academic achievement. The one time I went to a clinic for an exam as to why I was having such a difficult time in school, the report to my parents and the school read, “He is a lazy student.” It only came to light after Chelation therapy as an adult, that my lead level was as high as 49.
After hearing about my past, my chiropractor, Bob Morgan, recommended a heavy metals test as well as a B12 test, because he new I had a vegan diet. So I went to my primary care physician for a heavy metals and B12 blood test. A week later, the doctor said my B12 was normal and no lead was found.
Those tests had offered me my only clues, and so refusing to give up, I asked for copies of my medical reports. That’s something I advise every patient to do because what I found contradicted the results I had been given.
The B12 chart goes from 200 to 1,100 and my number was 229. The medical report stated that patients with values less than 300 PG/ML may experience unexplained neuropsychiatric abnormalities due to a B12 deficiency. These symptoms include psychosis (delusions and hallucinations) as well as affective and behavioral changes such as depressive mood, anxiety, irritability/lability, apathy, euphoria, disinhibition, agitation/aggression, aberrant motor activities, sleep disturbance, and eating disorder.
That sure didn’t sound normal to me.
As for the heavy metals report,It had been done from a blood test. I learned several months later that heavy metals are stored in your fat & bones and a DMSA urine test would give a more accurate reading..
But I was running out of time. I was starting to lose my physical capabilities now at a more rapid pace, but I wasn’t losing my mind, and what I needed was new information to feed my mind.
My primary physician said it was time to pass me onto a neurologist. That was not easy, they where booked for 2 months out.The neurologist said to have 2 tests done before he would see me. So first I had an MRI of my brain to rule out multiple sclerosis. It came up negative. Then I had a spinal tap, which felt like a bee was stinging me as I watched the needle on the TV monitor enter my spine. That came up negative.
I needed a break from all of this.
My friend had rented a house in Dec.05 for Mexico for his birthday and asked Mona and me to come along. I was weak but I could still function.
Five days into the trip we went for walk. That’s when both my legs collapsed and I ended up on the ground. My friends helped me get up, I was able to walk, but when it came to steps, I had to crawl up them. At the end of the trip I had to be put into a wheelchair to return home.
The mystery was becoming very serious, and we have no idea what was coming.
Finally I had my first neurology appointment. When the neurologist completed the exam, he wanted me to go straight to the hospital. I told him I did not have any insurance. I could not afford to be hospitalized. He told me to come back in a week for an EMG.Electromyography (EMG) is a diagnostic procedure to assess the health of muscles and the nerve cells that control them (motor neurons). EMG results can reveal nerve dysfunction, muscle dysfunction or problems with nerve-to-muscle signal transmission.
On January 9, 2006, my daughter wheeled me into his office. I was lifted from my wheelchair and placed on an exam table. When the doctor inserted the needles into my nerves for the EMG, the pain was almost unbearable. A short time into the test the doctor looked at me and said, “I’m going to stop torturing you. Certain nerves coming from your spinal cord have died and others are dying, there is no way to bring them back”.
That’s when the mental torture began. The next words out of his mouth took my breath away. “I believe you have ALS. You are progressing rapidly, I’m sorry, life expectancy for your condition is 18 months or less.
Years later, as an activist with EverythingALS and having witnessed the quick decline and death of so many people with ALS, I knew the fear these words evoked in thousands like myself.
I couldn’t believe what he was saying, how could he know that, I can’t believe it, No, No, No…
