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.

Friday, July 27, 2012

37 - Let the Games Begin!

I am trying desperately to keep up with posting, but it seems as if I only get on the computer three or four times a week. If it's a day that I am working, then usually, I have no voice left by the end of the day to do any dictating. As it stands now, because my voice continues to weaken, the more tired I get, the voice to text software has difficulty picking up my voice. I can see a noticeable difference at work between the morning and the afternoon, in the way the software works. And of course, the more mistakes the software makes, the more I need to go back and repeat myself, which results in me speaking more, which then makes my voice fainter, which then leads to more mistakes, blah, blah, blah.... At this point, since it is summer time and we work a reduced schedule, I'm only going into work two days a week and working from home one day. I am hoping to keep this schedule, come September, by utilizing one sick/vacation day a week and one short-term disability day a week.  My goal at this point is to make it to January 1 and then reassess at that time. Even though the physical aspect of work is getting harder, I still think I can do it. Cognitively, there are no problems, which is the most frustrating part for me. I have so many ideas and so many things that I would like to do and implement, but I just don't have the strength and because I'm such a control freak, I would have great difficulty turning things over to someone else. In reality, I can and will continue to work, as long as my voice holds out.

 Otherwise, the past month has been rather uneventful, except for my 44th birthday and a 3 night, 4 day trip to Dallas. I have mentioned previously that due to the setup of Tracey's parents shore house at LBI, a visit down there this summer has not been possible. With the tremendous heat wave we have experienced thus far, an escape down there for a few days would have been nice. Instead, like most of you, I been held up inside enjoying the A/C and fearing next month's electrical bill. Even being outside for a few minutes takes so much energy out of me and these days, I do not have a lot to spare. Besides being outside for Tracey's surprise birthday party in June, there has only been one other day where I spent an extended period of time outdoors. That was when we went to a surprise birthday party for one of Tracey's friend's child, that actually turned out to be for me. It seems that my coworkers had gathered together several months ago to 
My family, with my Pemberton family! Thanks Dr. Barbara for the pictures.

plan this event. Between 40 and 50 people, including current coworkers, former coworkers and their families showed up at Bamboo Gardens, a picnic event place with miniature golf, volleyball courts, basketball courts and a man-made lake for swimming, to celebrate my birthday. Everyone, especially the kids, seem to have a good time despite the heat. Looking back, I am still overwhelmed and a little bit choked up, to think that these people would do this for me. This is the other reason why I want to continue working. Because not only do I have a good job, that I enjoy doing, but I get to do it alongside some wonderful people. Without their continuous support and the tremendous effort they bring forth every day, I don't know if I would be able to continue to work. I can tell you this much, I, along with the people of Pemberton Township, are very lucky to have them.

The other major event this month was a Galactosemia conference held in Dallas, Texas last week, from July 19 to July 22. Galactosemia is a metabolic condition that my eldest daughter Sydney has, in which her body lacks the enzyme necessary to metabolize lactose and is more severe than just a simple lactose intolerance.. The Galactosemia conference is held every two years. Tracey and I had gone six years ago, when it was held in Philadelphia, nine months after Sydney was born. Since then, Tracey had gone to Chicago and Minnesota, respectively, every two years along with my sister to attend the conference. This year, we went as a family, with my sister once again included for assistance and support. The focus of this trip was not so much for the information that we would get, but instead to give Sydney the opportunity to meet and interact with other children who share the same metabolic condition. We paid for the conference, which included child care, and booked our hotel and plane tickets back in April. Although I experienced continuous anxiety from that point, the anxiety really began to increase about a week before the trip. How was I going to get on and off the airplane? How would I get in and out of my seat on the plane? What if I had to go to the bathroom on the airplane? How would I get to the bathroom or shower in the hotel? How would I get in and out of bed? What if I fall? What about food, since I'm now on a gluten-free diet? And worst of all, what would happen if my stomach issues should reappear? These were just some of the questions that went through my mind routinely. I had to consistently remind myself that it was just four days and I could do it, and more importantly, I was doing it for Sydney.

Sydney enjoying dessert!
All in all, except for one stomach incident on Saturday afternoon, the trip went well. We were updated on a lot of new research and diet information, but most importantly, Sydney got to see and play with dozens of children around her own age with the same metabolic condition. Most the food served at the conference, including snacks and desserts, were "Syd Safe" (dairy free). The highlight was Thursday night, when they had a dessert social and Friday night, when they had a chocolate social. It was like watching a scene from Willy Wonka and the Chocolate Factory as all of the kids, who were very hesitant at first, when hogwild sampling all of the desserts. Again, watching Sydney stuff her face full of chocolate and candy, and the subsequent smile on her face, made any difficulty on my part, well worth it. The most difficult part for me was getting on and off the plane and into my seat. In order for me to get into my seat I had to drive my power chair right up to the door of the airplane. From there, I had to transfer from my wheelchair to a special wheelchair that would fit on the plane. The special plane wheelchair is a tiny little thing, probably less than 2 feet off the ground and less than a foot wide so it can fit down the aisle of the plane. Here is a question for you... how many people does it take to get me from my wheelchair to my airplane seat? Apparently, at Newark Airport, the answer is 4. They do this by placing me in a basket hold, which consists of folding my arms across my chest and locking my arms under my shoulders. From there, one man lifts me from behind, while another lifts my legs and I'm transferred to the plane wheelchair. As they lifted me, it seemed as though every bone in my arms, neck and shoulders cracked like a bunch of firecrackers going off. Once they get me onto the tiny little chair, they strap me across the shins, over my thighs, around my waist and across my chest, my arms still folded against my chest and then wheel me backwards onto the plane. At this point, I'm looking like Hannibal Lecter from Silence of the Lambs, without the facemask. To get me into the plane seat, they repeat the process in reverse. The procedure was repeated again, when it was time to come home. The only difference however, is that in Texas, they only used two people to get me off and I the plane. And as far as the saying "everything is big in Texas" goes, one of the people that helped me off the plane in Texas was shorter than Tracey (and she is only 5' 2" at best) Even a week later, I'm still feeling some of the residual soreness from the lifting and carrying.

The other difficulty that I had was that for the first 24 hours or so I had little to no strength.  I assume that getting up at 5 AM to get to the airport, transferring on and off the plane, the flight itself (a little over three hours) and getting to the hotel was a little too strenuous for me.  From Thursday afternoon through Friday, I could barely transfer from my wheelchair.   The minimal strength that I typically have in my legs was now zero. For the first 24 hours or so, the only way I could transfer was to have Tracey stand me up, angle my body in which direction it needed to go, and give me a push, whether it be onto the bed, the toilet, or back into my wheelchair. Unfortunately, this created a whiplash effect to my neck which contributed to the pain throughout the trip. Really, there was no other way to do it. Throughout the trip, we were experimenting with different placements of the wheelchair to try and make transfers easier. By 1 PM on Sunday, about two hours before leaving to go to the airport to come home, we finally figured out the correct positioning of the wheelchair to ease transfers. Better late than never. At least I did not fall during the trip, although I came close a couple times. Tracey did another outstanding job getting us all their and getting us home in one piece.

My biggest highlight this summer, so far, would have been this week. Yesterday, we went to Sports Authority to buy the girls soccer equipment. For about a year, Emily has been asking to play soccer. Unfortunately, the first time she asked, we had just missed the sign-up period so we had to wait for this summer. As we were signing Emily up, Sydney stated that she wanted to play also. Finally, my girls wanted to play sports! Not to take anything away from swimming, gymnastics or dance, soccer was at least something that I played and I knew something about. Sydney had her evaluation practice last Wednesday night and just prior to leaving the house, I felt the same anticipation that I used to feel prior to me leaving the house for one of my games. Sports was one of the few things in life that I rarely felt anxiety over and it was nice to see Sydney having the same anticipation, rather than anxiety, especially since she told me the day before that she was a little nervous about playing. I really miss that feeling of heading off to a game. Whether it was one of my hockey game several years ago, or a Little League game almost 35 years ago, I was always ready to go hours before and always one of the first people to show up, because I could not wait to take the field, the ice, the courtor whatever. It brought back good memories to share this anticipation with Sydney. I did not even mind that one of my dreams, the coach my children, was not going to come true (yet). Even before Tracey was pregnant, I envisioned myself as a coach to my children, whether they were boys or girls, whether it was softball or baseball, or anything else. I was just happy now, that I would have the opportunity to see my little girls run and play just as I had done when I was their age. Better yet, I was so proud of Sydney for the way she played. Although she was shy and timid, she ran the whole time, tried to get involved, and when the ball came her way, she stood her ground.  At the end of the practice, she told me how much fun she had and how she could not wait to get back on the field again.  That's my girl!

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