About Me

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For those of you that don't know, I was diagnosed with ALS in March 2007. After two more opinions, the diagnosis was confirmed in the fall 2007 at age 39. This coming August (2010) I will have been married for seven years to an incredible wife, who has supported me throughout. During the course of our marriage we have been lucky to have two wonderful, amazing daughters. Sydney, will be 5 in November. Emily, will turn 2 1/2 in August. Currently, we reside in New Jersey with our Beagle, Trixie.

Sunday, March 27, 2011

Post 20 - Happy Birthversary

Birthversary: (burth vur sir e) -  The combined celebration of a birthday and an anniversary.
The first time a doctor suggested that I had ALS, I was pretty much un-phased. Whether it was ignorance or denial, I'm not really sure. I can remember the conversation like it was yesterday. The doctor asked me if I ever heard of ALS.  I replied, "Yes, that is Lou Gehrig's disease, right?" Except for the fact that I knew Lou Gehrig died of it (brilliant that I was able to figure out that Lou Gehrig died of Lou Gehrig's disease), some 65 years prior, I really didn't know much else about it. The doctor then told me "I think that is what you have." At the time it seemed like no big deal. I was actually okay with the diagnosis, because I figured in the almost 70 years since Lou Gehrig passed away, there had to be some sort of treatment or cure. After a couple of seconds, I asked the doctor “So what do I have to do?"  thinking that there was some medication, treatment or surgery that I could do.  When the doctor spoke spoke, it was then that I experienced my first bit of panic.  His response was "there's nothing to do." He then began to go into detail about how he came to this diagnosis.  At this point it became like Charlie Brown in school-blah, blah, blah, blah.  I was brought back into the conversation when I heard him say something about a wheelchair. I said "do you mean I'm going to be in a wheelchair in six months?" He said, "No, but probably within six years."  In any case, he was sending me to a neurologist who specialized in ALS for a second opinion before confirming anything.  It was on the ride home that denial finally took over.  It seemed inconceivable to me at the time that I could have ALS.  After all, my whole reason for seeing the doctor was due to some mild muscle twitching, and some arm fatigue. The doctor had told me about the characteristic symptoms of ALS, which included slurred speech, difficulty breathing, falling, and an inability to walk and so on.  On my ride home I was thinking that not only do I not have those symptoms, there is no way that I could be diagnosed with a fatal, non-curable disease. When I got home, I kind of halfheartedly told Tracey the diagnosis, still not believing it myself.  Still, somewhere deep down inside, I was thinking "what if...” At this point I did what probably 99% of you would do, and that is... Google!  On the first website I came to, this is what I found:

What is amyotrophic lateral sclerosis?

Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig's disease, is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles. … Eventually, all muscles under voluntary control are affected, and patients lose their strength and the ability to move their arms, legs, and body. When muscles in the diaphragm and chest wall fail, patients lose the ability to breathe without ventilatory support. Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. However, about 10 percent of ALS patients survive for 10 or more years.

… Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms.

… Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms.

It was that line that stuck in my head that night as I had the first of what was to be many tearful nights to come. (Incidentally, it was the last line of that paragraph “10 percent of ALS patients survive for 10 or more years” that became the inspiration, along with the words of a "stuck up,... half-witted,... scruffy-looking... nerf-herder" that led to the title of my blog, Never Tell Me the Odds.)

So why am I telling you this story today? Well, if you have not guessed it already, it was four years ago today that I had that fateful doctor's appointment. My diagnosis anniversary, if you will.  Even though it was four years ago today that I was given, at the time, a potential diagnosis, I could probably track my symptom onset to at least two years prior to that, although no one ever really knows for sure.  How am I so sure that this occurred four years ago today?  Well, besides the fact that it's probably something no one would ever forget, March 27 also happens to be my mother's birthday. I remember calling my mother to wish her a happy birthday, and then following that up with the news of my possible diagnosis. Now some people may think that the date of March 27 is now somewhat tainted due to the fact of the news that I received back in 2007.  But, in actuality, I see it as an omen, an ironic twist of fate, and a sign of good things to come.

To explain why, I'll need to turn the clock back a little over 30 years.  Now I will tell you that my memories from that time may be a little sketchy since it was over 30 years ago and due to the fact that I spent most of the 80s and a good part of the 90s trying to repress those memories (that's a story for another time and probably another blog).  It was around this time that my mother was diagnosed with severe ulcerative colitis.  She had spent the better part of two years in the hospital and my grandmother had come to live with us.  Due to the disease, my mother was practically bedridden, and she was not expected to live. I remember having conversations, at the time, with family members about who I wanted to live with.  I remember being about 12 years old and going to visit her in the hospital. She was almost unrecognizable to me. Although she was in her mid-30s at the time, she looked at least double that age.  My mother had lost a considerable amount of weight to the point where she was so weak, she could not even walk and had trouble talking.  Because she was unable to digest food and was so weak, her muscles atrophied to the point where she was only skin and bones. Eventually, due to some experimental surgery and the work of some wonderful doctors, my mother survived.  More importantly, I believe that my mother survived due to her will to survive, and the love for her children. I can remember her telling me that everything was going to be okay, and I believed her. I can remember the determination that she had to get better, for her children. I remember how after the colitis issue was resolved, she had to re-learn things like walking, eating and writing again, because she had lost so much muscle mass during her illness. This is how I know I will be able to get better. I like to think that I share that same combination of determination and stubbornness that my mother has, which helped her to survive during that time. There is no doubt that I share the same love of my family that she did for her family at the time and continues to today.

At times during the past four years, I've thought back to that time in my life, some 30+ years ago, and remember what my mother went through, fighting to survive, as a single parent, raising three children. Her battle has served as an inspiration to me and just like her, I will refuse to give in, do what I need to do, and come out victorious in the end. This morning, we celebrated my mother's 67th birthday. I can't wait until we celebrate my 67th birthday.

Happy birthday mom! I love you!


  1. What an inspiration! Happy birthday to your mom and can't wait to see you blow out 67 candles of your own.

  2. Hope that your mom had a fantastic birthday and that YOU have many many more!!!