My Story

Let’s back up for a minute and take a look at how this condition might get started. Most folks who get this disease at some point ask the time honored question: “How the heck did this happen to me?” Unfortunately the beginning of the disease process in ALS is still a mystery. But there are some things worth discussing. Between 5 and 10 percent of affected people inherit the disease, the other 90 to 95 percent of us what is referred to as the sporadic form of ALS. A few main theories are prevalent as to how the sporadic form gets started in a person. These include a viral component, or retro-virus, acting as a trigger. Another theory involves environmental factors being involved in triggering the disease process. Many environmental factors have and are being explored including pollution, living in proximity to old toxic waste sites, pesticides, heavy metal poisoning, and even the possibility of the effect of living under electric power lines.

Although a controversial theory the heavy metal idea is one of interest to me. Mercury is generally considered the most neuro-toxic of the heavy metals. We can absorb mercury in a variety of ways: direct exposure, through exposure to mercury laced pollution, a small amount of mercury is used as a preservative in many shots and immunizations, and dental amalgams, among others. Amalgams are the “silver” fillings we received at the dentist. These fillings have a large percentage of mercury content.

Nothing has been proven about direct causation of the disease due to any of these factors. But a prevalent theory is that the condition begins due to a combination of many of these factors in a kind of “perfect storm”. Mix in x-factors such as stress, liver malfunction, and a host of others and you have the potential of a witches brew that can initiate this rare disease. I’m interested in all of these potential causes because someday they might shed some light on the mysteries of the disease process itself.

In my case I began by looking at a possible x-factor, stress. In 2 years time I had a number of things that could be described as stressful events or situations. A good portion of it was actually positive stress such as my engagement to be married. But here’s a list of the major things that took place in that 24 month time span: our engagement, selling my house and moving, the sickness and death of my mother not to mention the function my sister and I shared in caring for her during that time, my wedding and adjustment to married life that my wife and I made, and the ongoing stress involved with a rewarding but challenging occupation. Again, these events were compressed into a relatively short time frame prior to my diagnosis. But who is to say? There are millions of people who have far greater stresses than this for even longer periods of time, and they don’t get ALS or any other disease for that matter. Probably most PALS, including Lou Gehrig himself, were well-adjusted, confident people who had the world on a string in many cases, and yet got ALS. But I think stress, and how we handle it, is a legitimate x-factor in this or any other disease.

What about heavy metals? No I’m not talking about rock bands from the 70's. I think heavy metals could very well be a part of this perfect storm. I’ve had some exposure to mercury through dental amalgam and possibly air pollution from a nearby auto plant in Cleveland for the 12 years leading up to my first symptoms. I’ve learned since my diagnosis that I also have high levels of lead in my body. This is also considered a neurotoxin. I trace this back to air pollution and also spending large blocks of time going mental with a heat gun stripping lead based paint in my former home. I can remember staggering out onto the front lawn trying to clear my head from the fumes on numerous occasions. Ok, ok a couple of those times were due to Coors Light but my point about breathing lead fumes is still valid.

I am in the process of getting rid of these metals through the removal of my amalgam, chelation therapy, as well as ingesting natural chelators such as cilantro and supplements such as alpha lipoic acid and vitamin c. Again, this is considered to be on the fringe by conventional medicine. But alternative physicians will readily discuss chelation therapy if asked. Let me slip in a few words about the danger of chelating too quickly. This can lead to a phenomenon known as back-fire. When this happens heavy metal can break away from the chelating agent and run loose in the blood stream and lodge anywhere, including the brain causing even more problems than it originally did. Discuss this with your physician or alternative physician before embarking on a course of chelation therapy. My point: chelating faster isn’t necessarily better. In the meantime keep eating that cilantro.

What were my symptoms leading up to this mess? For the most part they were subtle. Thinking back about a year and a half before diagnosis I can remember being in the shower at the gym. I forgot my flip-flops so I decided to walk across the shower floor on my heals like Jerry Lewis would do in the movies. But my left foot wouldn’t respond. I could walk on my right heal but I couldn’t point my left foot up enough to walk on my left heal. Hmm. I wrote this off to some kind of atrophy from the workouts I was doing. Then later that winter I noticed that I was “walking funny” during my evening walks with the dog. I would notice this around the 2 mile mark. I was sort of pulling my left foot forward and plopping it down in front of me. Again, there seemed to be a logical explanation in that I was walking a bit differently to protect a painful corn on the bottom of my foot. I thought it might be some sort of atrophy as a result of this. Finally that Spring when walking the dog in the good weather I realized the inability of my left foot to function properly. The “foot drop” condition of my left foot had begun.

My first visit to my primary care physician in Cleveland didn’t reveal anything weird enough for a referral to a neurologist. Then about a week later I took my motorcycle out to ride and I wasn’t able to work the gear shift lever with my left foot. This was really spooky. I knew at that point something was drastically wrong. I immediately scheduled another doctor appointment with the same PCP. In the mean time I got on the internet and did some research (not recommended) as to what these symptoms could be. There I found some other quieter symptoms I’d been having including muscle cramping and fasciculations (that $20 word that PALS know so well that refers to the twitching of muscles due to neurological impairment). I had a pretty strong suspicion at that point that I had ALS. I would like to report that I handled it like John Wayne but the reality was I was absolutely terrified.

My PCP in Cleveland, actually the Nurse Practitioner there, referred me to a neurologist. I wasn’t able to get an appointment for almost 2 months during which time I actually prayed that my condition might be MS or some other disorder that wasn’t such a “death sentence”. But I didn’t catch a break (not that MS is any big break, it’s a very tough disease unto itself) and after some tests including an EMG (electromyograph) the neurologist said it looked like I had a neurodegenerative disorder. He said that ALS was very much “still on the table”. I was absolutely numb and stunned at the same time. I still thought there was a chance that it could be something else. He explained that he was now referring me to the Cleveland Clinic to rule out any other possibilities. I remember him keep asking if I had “any other questions”. Any other questions? Ya, how about: can you stop the freaking world, I want to get off. I did manage to come up with a few questions. Thankfully I had the presence of mind to ask if it was true that everyone dies of ALS within 5 years. He said, no, that wasn’t true. But then went into the usual spiel that statistically speaking when looking at a bell curve that most people fall within that curve, etc. etc. I can’t remember any other questions but I do remember the buzzing in my ears. It felt like Rocky Marciano just caught me with a left hook. I don’t wish this scene on anyone. But most of the people coming to this web site have their own personal account of what their experience was.

In the months between this first diagnosis and my trip to the Cleveland Clinic I slowly began to recover mentally and spiritually. Thanks to my wife and daughter, my brothers and sister, cousins, my “extended family” at work, old friends from my childhood and my current community of Wooster, Ohio, and a lot of prayer I started regaining my bearings. By the time they confirmed the findings of the first neurologist at the Cleveland Clinic I was much more ready to receive the diagnosis.

So for those of you who hung in there through this rather boring rant, I thank you. I hope that it helps in some way to hear the circumstances as to how I came to this point in time. I’m currently doing well and want this web site to be about successfully living with this disorder. I want this to be a place where PALS and CALS, and those who care about them, can come to get in out of the rain. You are welcome here now and always.