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.

Monday, July 12, 2010

Post 3 -Thanks for the Memories

After re-reading my first post, and recognizing that one of the reasons for starting this blog in the first place was to “ thanks those that have been supporting me and my family...”I realized that before going any further I should throw out some props to all of my family, friends, coworkers, etc. who have been supportive during this period. Some examples, in particular, stand out.

Last summer, the Trenton Thunder, Double A minor league affiliate of the New York Yankees, had an ALS Awareness Day in which over 50 friends and family members attended on my behalf. The weather forecasters called for a cloudy day with the temperature in the 80s, with low humidity. They weren't even close. The sun was out in full force and the temperature was at least in the mid-90s, with the humidity something like 248% (okay, maybe I exaggerated that last part, but it was really, really bad!). The nice part about this was that everybody showed up despite the brutal heat. At the end of the day I knew I was probably the only one in the group that actually cared about the game. Everyone else was there because of me and for that I am truly thankful. Additionally, because I was responsible for selling over 50 tickets the ALS Association gave me the opportunity to throw out the first pitch. One of my best friends, Jeff T., photographer extraordinaire, portraits a specialty, (stay tuned for a possible ALS fundraising opportunity involving Tismam Photography. Details to follow) was unable to attend the game that day, because he had a wedding to photograph in North Jersey that afternoon. Recognizing that this was a special day and a special opportunity for me, Jeff called the bride and moved their meeting time back an hour, just so he could show up to photograph me with my family on the field and me throwing out the first pitch.

Last fall, Tracey's brother's family was having a garage sale. My 14-year-old niece, Samantha F., not having that much that she wanted to part with, but yet wanting to be involved, decided that she was going to bake cookies to sell at the garage sale. She also decided by herself that she was going to take all of the money she made selling her baked goods, and donate it to the ALS Association.

Back in May, when sending out an e-mail informing friends and coworkers of ALS awareness month, I got an unexpected response from a former coworker and current friend, Kolman K. Paraphrasing, it went something like this - hope you're feeling okay. By the way, I am registered to do a 75 mile ALS awareness bike ride, dedicated to you next month. He ended up raising almost $1000, based primarily on the donations of former and current coworkers.

Last month the ALS Association gave me the opportunity to raise additional funds for our ALS walk team by selling soft pretzels and soda at a Boscov’s department store in South Jersey. Most of my family members came out to help sell. My 11-year-old nephew, Jimmy F., was there to help as well. He did a lot of the running around and, heavy lifting that day. More than enough work to earn a pretzel or two and a few sodas, of which he certainly had and then some. However, each time he took a pretzel or a soda he reached into his wallet and took out a dollar to put into the cash drawer despite my best efforts and those of our family to get him to just take one.

This coming October my friend’s Christine H. and Larry Z. will be getting married. They have been planning this wedding for several months now. A few months back, Christine approached me to get my opinion about the wedding favors for her guests. Christine and Larry's idea was, rather than spend a few bucks on some trinket for the guests they wanted to make a donation, on behalf of their guests, to an ALS charity of my choice.

There is an old adage I'm sure you have all heard,”actions speak louder than words”. I in no way mean to criticize those that have previously offered their help or support, and readily admit that I have turned down offers of help more than I should. With that in mind, I would like everyone to know that Tracey and I do truly appreciate the offers of help and assistance. But accepting help is never an easy thing to do, especially for someone with ALS. The disease does not only rob you of your independence, but can also shred confidence, self-esteem and self-worth. Accepting help, or even acknowledging that you need help, with everyday tasks that you were once able to complete with ease, and feel that you should still be able to complete, does nothing to increase those feelings of helplessness.

So, to all of my family, friends, coworkers, and to whom ever else may be reading this, I want to thank you on behalf of myself, my family and ALS patients everywhere for your past, present and future support and assistance!

PS - Happy 76th birthday, Nana