Wednesday, March 25, 2009

Brian's Song

Son of Pianist turns Fighter

Uncle Pete, one of many brothers: My Dad had a passel of brothers. All were born of immigrant parents during or near the First World War years. That made them all draft age when the Second World War began. The brothers scattered throughout the world, serving in most of the theaters of war. My own father served by staying home and protecting the citizens of Clairton, PA as a local policeman. All uncles returned safely and settled in their home area, save one – Uncle Pete. He fell in love with a gal from Long Island, NY and settled there. He joined his father-in-law’s business and helped grow it from one-man-show to one of the most prominent businesses on Long Island.

Father to son: Uncle Pete named his firstborn son after himself. Cousin Peter and I had lots in common – both were saddled with being juniors, thus both had a family nickname. Both were restless souls who saw opportunity outside our community, and both went on to college and careers. But there were differences as well. While my musical ability was limited to playing the radio, Cousin Peter was a most talented pianist as a youngster. Many relatives thought he would be the first virtuoso in the family, and although my pre-teen and teen years were not steeped in the evaluation of musicians, he seemed awfully talented to me. But Peter eschewed a career in music for one in business, becoming a successful businessman and having a family of his own including son Brian.

Brian also had a song to sing: Brian by all accounts was a precocious youth. A bit athletic. A great personality. A fun loving gifted guy with a strong mind. He was the envy of many and the pride of his parents. But nobody realized what a fighter Brian would become and how, in the face of adversity he would stay upbeat, positive, and a loving husband, father, son, and friend. Brian graduated from Virginia Tech, married, and had children. He had a great job as an engineer and a wonderful life but began having recurring symptoms that he could not explain. Two years ago this month he was diagnosed with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease. Brian’s own words and those of his wife capture his journey much more effectively than can I. Thus, I will excerpt from Brian’s Journal. For further information about the disease or how you can help, see the following web site:

Excerpts from Brian’s blog: “I have been diagnosed with ALS, amyotrophic lateral sclerosis, better known as Lou Gehrig’s disease. My hope is to educate myself and anyone else interested along the way through many different vehicles. This “journal” is, I hope, a start. It is also to give me a way to convey what’s going on physically, emotionally and familially.

“Around the first of the year, I started noticing that my right hand was very stiff and was behaving oddly. I think it started with the computer mouse. It felt like I couldn’t move my right index finger and my right middle finger independently. Everyone who has ever operated a mouse knows that will drive you nuts as I was constantly right- and left- clicking at the same time, which again as most people will know, slows things down considerably. It then started going from stiffness to weakness. Things like gripping a pen or opening an unopened bottle of water were starting to become difficult. The worst thing was turning the key in the ignition of Jameela’s car. My car was, and continues to be, fine, but I’d have to reach over with my left hand to start her car.”

(Brian’s work and life centered on the computer so initial diagnoses suggested the possibility of carpal tunnel syndrome. Further tests were administered which diagnosed the ALS as the probable issue. An excerpt reflects Brian’s outlook on life.)

“I was accused today of being “oddly positive,” something that I know was meant with the greatest and most loving of intentions. And I kinda like that term. What better way to go through anything than with an attitude that is all things positive, even at those toughest and oddest of times. I’m sure there will be bumps on Oddly Positive Street, but it’s one that I’m going to plan to move to and hope to see many neighbors there with me... Thankfully ALS does not attack mental capacities so I will continue to work.... From what I have learned, there is no one true test for ALS. The diagnosis is made by putting all the various pieces of the puzzle together and ruling out other possible diagnoses and that is just what the neurologist did. At this point, it remains only my hands and arms that are weak. So far, there are no signs that it has progressed to the legs or face or beyond. From what I can deduce, the fact that it started in the hands and not closer to the core, means that it will progress a little more slowly..

“Today is the day we circle the wagons and start fighting. Rest assured that I am not in the middle of the circle with everyone surrounding, protecting and fighting around me, but at the 12:00 high noon position leading the fight. I couldn’t ask for better people to be in this with me. I know this will be tough, but no one is luckier than I am....”

(Brian tells what ALS ISN’T)

“Yes, ALS is a terrible disease and who knows where it will take us, but here’s what it isn’t:
*It isn’t painful;
*It isn’t numbing;
*It isn’t immediately physically disabling;
*It isn’t mentally incapacitating;
*It isn’t unknown to the research community; and
*It isn’t short on support groups.

“Sunday were my first “why me?” and “why us?” moments. They were bound to happen eventually, it’s not like they were unexpected. But they are not fun thoughts to have. Must be the engineer in me who needs answers and there just doesn’t seem to be an answer to that question. I’m not sure what’s more frustrating, the disease or the lack of an answer to the “why me?” question. I know I can’t dwell on it, and I won’t, but you can’t help but let it creep in once and a while.

One final ironic story. We’re at dinner tonight and I notice Jameela’s t-shirt. Turns out it’s from a fundraiser walk for ALS from a number of years ago up in Philadelphia. If I remember correctly, my father played in a tournament sponsored by Curt Schilling (see a few updates ago) and came home with a few t-shirts for us. There’s Jameela wearing it unknowingly tonight. Pretty ironic, isn’t it. She hasn’t worn it in years.

Fast forward two years. Brian is still courageous and family and friends are still fighting alongside him. The family is preparing for the “Walk to Defeat ALS.” Quoting from last week’s blog:

“Hey Everyone,

The 2009 Upstate Walk to Defeat ALS is a mere 6 weeks away. Brian's Blarney Blokes is off to a good start with 13 team members, BUT WE NEED YOU. Last year we pushed the 100 people number. Help us hit that again. There will be a potluck bar-b-que the evening before for all team members.

Or, if you are so inclined, why not create your own team. Get folks from work, school, church, the gym, anywhere, and give the Blokes a run for their money when it comes to having the biggest team or raising the most money. You and your team just might be invited to the BBQ as well.

To join the Blokes, go to
and follow the links to register. That same link will take you through setting up your own team as well. Or, if you'd like to support any one of the Blokes who are already signed up, there is a link for that to. Just go to
and choose the walker you wish to support. I sincerely hope you'll consider doing one or the other.



We encourage everybody who reads this blog to support Brian and to support the Walk to Defeat ALS.

A little blogging music Maestro… “Hero, Through the Rain, Can't Take That Away, and Fly Like A Bird” all by Mariah Carey

Dr. Forgot

No comments: