I never imagined becoming blogger much like I never imagined being diagnosed with ALS. Life has a way of throwing you curve balls and the only thing you can do is go with the pitch. As such, I am going to make the best of it and in fact I plan on thriving.
The intent of this blog is to provide a periodic update of how I am doing in a centralized location where my family is not inundated with images of my decline. This is why Alecia and I have been so guarded regarding my condition do date. I hope everyone understands our thought process as Caroline and Mac have been paramount in our decision making. They will have enough on their plate as I breakdown and we didn't see any need to accelerate that process for them.
For those of you whom are not familiar with ALS (aka - Lou Gehrig's Disease), it is a degenerative neuro muscular disorder. Essentially the nerve path between the spinal cord and voluntary muscles is disrupted ultimately causing the said muscle to waste away (atrophy) and cease to function. A good analogy is a flickering light bulb that eventually burns out. The average outcome for ALS is less than ideal (avg life span of 3 years) but there are many exceptions to the rule. I hope to be such an exception given my younger age and elevated level of strength and health going into this. Your ongoing thoughts and prayers will certainly aid in that becoming a reality.
Looking back, my first noticeable symptoms began in February 2007. I didn't realize at the time, but the occasional quivering jaw muscles and cramping of the abdomen were signs of Bulbar Onset ALS. As the months moved on my speech became noticeably nasal in delivery and I began to struggle in enunciating certain sounds. The coup de grace occurred in May of 2007 when I crashed in a 1-bicycle incident on a trail west of Jacksonville. While the crash had nothing to do with ALS, it did leave me with a mangled right shoulder while leaving my business partners wondering if I actually incurred a stroke or head injury. This was the impetus for scheduling an office visit with the neurologist and ultimately led to the formal ALS diagnosis in September 2007.
For those of you whom I haven't seen in a while, you must know that my speech is essentially gone save for 1-word responses. While I still have much to say, I have no way to get it out in a framework that you will understand. Hence I write long winded emails and blogs and I carry a note pad. The other thing that you will notice is that I have lost almost 30 pounds as I write this initial blog. The weight loss is a combination of slowing appetite and muscle wasting of the legs. Specifically my big "butt" is gone and "hamstrings" have been reduced to "hamstring". However, there is a silver lining; for the first time in my adult life I can actually buy clothes off the rack. Finally, you will notice that I walk with a slight limp due to my right lower leg wasting away but that is minor in nature. I won't be embarking on any tri-athalons any time soon but I am getting around just fine. Otherwise, I'm still working, staying fit and trying to keep up with the kids. I'm also still keeping the yard in impeccable condition with aid of a new riding mower and Alecia's help on the push mower.
Several people of has asked what can they do? The most important thing is keeping me and the other ALS patients and care givers in your prayers. Our biggest weapon in fighting this disorder is a strong faith and positive thought. Secondly, I am going to be sending out future correspondence regarding fund raising for the ALS Association (http://www.alsa.org/). I have never met a more dedicated and compassionate group of people. They are spear heading the effort to find a cure and/or treatment for ALS. Additionally, they offer various programs and assistance to ALS patients and caregivers at the local level. Look for more details future as to how you can help.
Finally, I would like to thank Jeff Kinney and the Franklins for providing the motivation and the know-how to make this blog a reality. I am deeply indebted for their efforts.
Faith never knows where it is being led, but it knows and loves the One who is leading - Oswald Chambers
Saturday, August 30, 2008
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