About Me

My photo
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.

Thursday, November 29, 2012

Post 40 -Happy Festivus

 I wanted to do a post-walk post and did not want to take seven months or so, like I did last time, to write it.  The primary purpose is to once again thank those that came out walked on what had to be the coldest walk day thus far, donated money and raise some funds as well.  We probably have over 60 people show up and walk, which is far less than the 100 or so we averaged over the last two years but still quite impressive considering the aforementioned cold, nasty weather and the fact that the walk was taking place five days after a major hurricane devastated large portions of New Jersey.  In total, our team raised around $8000!  So, again, thank you, thank you, thank you to those of you who came out for support will otherwise raised funds or donated.  I cannot begin to tell you how much it means to me.  To the rest of you… well, there's not much else I can say.  I'd like to say "F-you," but I won't.
The f-you it's for those that I now refer to as the "no-show, no dough".  I recognize that everyone has their own lives and own issues.  I know several people were unable to attend due to previously scheduled family engagements, illness, pregnancies, hurricane related issues, and even car trouble, but as true friends do, they were able to show their support by making a donation or at least dropping me a line to let me know they are thinking of me.  After all, that is what it's really about.  As I've said before, the money does not go into my pocket, so the money donated to our walk team has little direct, if any, benefit to me.  What I do benefit from it is the emotional support.  That is what I get when you show up to walk, when you fund raise on my behalf, or even if you take the time out of your day to make a simple $5 donation.  It tells me that you're concerned.  That you care.  I find it amazing the time that some people have to make moronic posts on Facebook or watch dancing with the stars, X factor, or any of that other ridiculous, reality trash that preys on your simplemindedness to grab your attention.  If you take one thing away from this post, I hope that you realize how such little effort is required to make a person feel better about themselves or their situation, whether it's me, a family member, a college or high school friend, a neighbor down the street, or even a complete stranger.
The last several months have not gone well for me, and without going into too much detail now, I will be facing a few challenges coming up soon.  That, in addition to a few other things has made me really think about who I can count on.  As next month begins, and every major retail store begins there "December to Remember" sales event, instead I will be getting my "December to Defrender” event. 
If I have to look at pictures of your ugly kids, stupid dog, smelly cat, read your ignorant political opinion or another non-funny postee card, then the least you can do is listen to my rant and rave and ask how I'm feeling every once in a while.  For those of you who fall into the "no-show, no dough" category (and you know who you are) I am asking one simple favor.  Just click the "like" button or leave a comment just to let me know your alive and that maybe you had some concern for my plight for just a few moments.  I'm not looking for excuses or explanations for the past but just a little compassion and support for the future.  For those of you that are not interested, that is fine.  No hard feelings.  You know where to find me if you change your mind.
I made a commitment in my life some time ago that I was only going to perseverate on the positive, that I no longer had the time or the energy to entertain negative thinking or anger (fear, anger, aggression… The dark side are they.…)  But I do believe that it is healthy to vent once in a while and I feel that my time has come.  So, only positiveness from here on out, … startiiiiiiiiiiiiiiiiiiiiing now!  Peace out everyone.  My best wishes to all of you and your families for a brighter future.

Wednesday, September 26, 2012

Post 39 - 'Bout to Go Stephen Hawking on Your Asses

It's a shame that I can't just get up and use the computer in the middle of the night when I have trouble sleeping because it seems that's what I come up with my best stuff.  Unfortunately, I only remember bits and students to I fully awake the next morning.  Last night was a perfect example.  I woke up around 4 AM, which seems to be my usual wake time most nights.  It is usually some profound thought or strange dream that causes me to wake up.  Usually, I am wide awake.  I also seem to wake up quite frequently between 1 AM and 2 AM, but usually have no problem going right back to bed.  It is that 4 AM wake-up that I struggle with the most.  I will usually drift in and out of sleep for a few hours until I finally get up.  This has been a relatively new occurrence over the past two months, and certainly has not helped in providing me energy or enlightening my mood.  In fact, since about mid-August, I would characterize my overall mood as "sullen."
Nothing major has occurred over the past two months.  No major declines in function, any major falls, aches or pains, no real bad news to speak of.  But for whatever reason, I have been in a funk during this period, with many more lows than highs.  I have continued working, going into the office about 2-3 days a week and working from home, 1-2 days.  One of my primary responsibilities is to facilitate staff meetings.  Something I was not particularly fond of, even when I was healthy.  My first meeting was towards the end of August, with the majority of my staff (about 30 people).  In the days preceding up to the meeting, I became more anxious, wondering whether I could still do it.  As my breathing becomes more difficult, it becomes harder to maintain speech, particularly articulation and loudness.  The day before the meeting, I even considered bowing out, as the thought of presenting in a conference room in front of my peers began to become very daunting.  Suffice to say, I believe the meeting went very well and I was very surprised how well I held up.  In fact, at one point during the meeting, I was able to let out an impromptu, semi-half assed rebel yell as we came to one particular favorite agenda topic.  Additionally, the two proceeding meetings went just as well, also.  I should consider this a major accomplishment, but for some reason I don't.
 As many of you know, I was diagnosed in the spring of 2007 and the diagnosis was confirmed that following fall.  In the fall of 2008, after asking if I was still working, the clinical team at University of Pennsylvania Hospital informed me that because of my diagnosis, I was eligible to go on full-time disability.  In the fall of 2009, after asking if I was still working, the clinical team suggested I go out on disability.   In the fall of 2010, after asking if I was still working, the clinical team recommended I go out on disability.  In the fall of 2011, they didn't even bother asking.  Five years ago, there was certainly some doubt on whether I would be here today, let alone, still working.  As far as work goes, my goal is to finish out 2012, and to assess the future during my winter break.  At times, though, over the past month, it has been a struggle just to get through this month.
Last week, I went for an assessment on my wheelchair.  Lately, and I'm sure this is contributing to my sour mood; the wheelchair has become not only very uncomfortable to sit in (literally, a real pain in the ass), but at times, very difficult to maneuver.  As a result, I'll be getting a new cushion for my tender derrière and a new head rest with wheelchair controls built in.  Therefore, I will be able to control the wheelchair by moving my head.  Now, besides are tremendously high IQs, I will have something else in common with Stephen Hawking.  The wheelchair alteration can be seen as a mixed blessing.  Depressing, in the fact that it is another step forward in disease progression, but comforting to know that it may result in giving me more independence as far as controlling the wheelchair.
Part of my lethargic mood has also interfered with my usual rah rah over the ALS walk in Philadelphia.  The first year we did it, we signed up around April and got the ball rolling.  Last year, thinking that we started to earlier the previous year, we kick things off in July.  This year, without much fanfare, we finally got things started in late August.  Unfortunate, because this is something I really looked forward to for the last two years.  I even have actual special reason to be excited this year, not only because of the tremendous success, and more importantly, the personal support I have received over the last two years, but because this year, my best friend will be hosting a special fundraising opportunity.  Are you ready!!
On Sunday, November 4, Jeff Tisman of Jeff Tisman Photography will be donating his services by conducting family portrait mini-sessions to the first 10 people who make a donation of $250 or more, with all of the proceeds going to the ALS Wing Fighters!  For those of you who do not know, Jeff is a multi-award winning photographer who has not only been featured in many bridal magazines, but is well-known throughout the record industry for his amazing rock 'n roll shots that have been featured in everything from magazines, album covers, and on concert T-shirts.
Beginning at 11 AM, Jeff will take pictures of you, your family, your dog, or whatever, in 20 minute sessions, on every half-hour.  You will be given a link so that you can access your pictures online and print at your leisure.  First come, first serve, when it comes to reserving your time slot.  The sessions will take place at my house, in the backyard (weather permitting), so as to capture the fall experience.  If weather is a problem, the photo shoot will take place at Jeff's studio, located in Kingston, New Jersey, just outside of Princeton.  Don't waste this exciting opportunity to make all of your friends and family envious, as I've done in the past, by getting breathtakingly beautiful photos of your family.
Speaking of the ALS walk, as a reminder, the ALS Wing Fighters will again be participating in the walk to benefit The Greater Philadelphia Chapter on Saturday, November 3, 2012, at Citizens Bank Park (home of the Philadelphia Phillies) in Philadelphia, Pennsylvania.  For those of you who are never participated before, I hope you'll consider joining us, and staying for our traditional after walk tailgate.  For those of you who have walked with us in the past, I look forward to seeing you again.  Remember, registration is necessary to participate.  There is no cost to walk or to join our team and assist in raising funds.  You can register to walk or make a donation to our team, the ALS Wing Fighters, by clicking the following link. ALS Wing Fighters Thank you to everyone who is already signed up and to those of you who have begun raising funds and have already made donations.  I can't begin to thank you enough.

Thursday, August 2, 2012

Post 38 - It's Good to Be King... or Is It ?

Poor men wanna be rich, rich men wanna be kings,
And a king aint satisfied till he rules everything.
B. Springsteen

In case you always wonder what it's like to be a king, I can tell you:

I have not prepared a meal in years. In fact, if I want a snack I have someone get it for me. And like my meals, my snacks are fed to me. If I do not feel like it, I do not have to go to the kitchen or to the table. All food is brought to me. If I want more, I simply ask for it. I have not held a fork, spoon or knife for over a year. Likewise, it has been a year since I've had to drive myself anywhere. I am constantly chauffeured around. In fact, my feet hardly ever touch the ground. When not in a car, I use a blue "chariot" to whisk me around. While in my chariot, people will typically get out of my way, open doors for me and smile as I pass on by, apologetically excusing themselves for being in my way, whether they actually are or not.

I do not have to bathe my children, help them get dressed, or put them to bed.  I do not walk the dog or take out the garbage. When it snows, I do not shovel the driveway. I do not cut the lawn. In fact, I do not do any household chores, upkeep or repairs, inside or outside our home at all.  When they are being done, I am usually resting on my throne, a reclining chair in our living room, in front of a large screen TV. when I get up from my throne, the throne lifts up and tilts forward to make it easier for me to rise. Even then, my chariot is waiting for me close by. These are a few of the moments when my feet actually touch the floor. I do not have to tax myself by getting dressed. I am assisted with this task. I also have my hair combed and teeth brushed for me. I do not even have to wash myself. I am showered and scrubbed from head to toe. When necessary, my eyes, nose and mouth are wiped for me, as well as all points south.

I rarely go to see family and friends, unless it is a special circumstance.  If people want to see me, they will usually come to me.  People appear to be overly concerned about my welfare and are always asking how I am feeling and how can they help me.  When I complete simple tasks, people are often amazed and will offer me congratulations and undue praise.
At nighttime, I do not have to prepare for bed. Again, my feet barely graze the floor as I transfer to my bed. I then have either the bottom and/or top of the bed raised or lowered until I'm comfortable. If I choose to watch TV, the TV is put on for me. Channels are changed by my request. If I so request, desert will be served to me in bed.  When it is time for sleep, my face and hands are again washed for me. Things like blankets and pillows are brought to me to make me comfortable. I go to sleep when I want. It does not matter if the kids are already in bed, the dishes are done, or if any other chores are unfinished.  If the kids should awake in the middle of the night, I always remain in bed. I do not awake to an alarm clock. I am usually awoken at a specified time that I have designated. Some days, when I feel like it, I sleep as late as I want, sometimes as much as 10 or 12 hours and it is my choice if and when I want to get out of bed.

Although this sounds like a wonderful life, there are some downsides to being King within my kingdom.  In most kingdoms, the Queen will sit beside the King and reap the benefits.  Unfortunately, in my kingdom, the Queen is on call 24/7 and is responsible for making sure 100% of the tasks outlined above are completed almost each and every day.  My Queen is assisted, at times, by two princesses who also reside in the castle. Although the princesses are only 6 and 4 years old, they do not escape service to me, their King. They will often assist the King by operating the television, fetching food or water and serving it to the King, typing on the computer, as well as other tasks they are capable of completing. On occasion, the task required is more than to be expected from a 6 or 4 year old, or they may not always fully comprehend the task they are being asked to complete, but they will always try their best to assist the Queen in service to their King. They will sometimes tell the King that they wish that he could do for himself. Their wish is genuine, with no malice, and I, the King would like nothing more than to fulfill their wish, but right now, I cannot. I tell them that that I will try my hardest to fulfill their wish someday. The eldest princess has vague memories of the King serving his own needs and doing for himself, but the youngest princess has no memory of that all. The youngest princess will sometimes look at pictures of the King without his chariot, and looks perplexed, as if she does not recognize the King at all. Still, they do not complain, at least not as much as you would expect of princesses so young. This is one of the most difficult parts of being King but that is the way of life in this castle.

So what is it like to live like a King... it truly, truly sucks!

P.S.- I would like to thank my Queen, and she is truly a Queen, for the happiest nine years of my life.  Although I sometimes try with this blog, words cannot express how I feel about her.  She amazes me more and more each day, and each day, I realize how lucky I am to have her.

Happy 9th anniversary Tracey.  I love you!

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!

Wednesday, July 11, 2012

Post 36 - A Temporary Cure for the Summertime Blues

I have several things to talk about since my last entry so I will try to succinctly cover them all, or at least most, without trying to go on to long. In case you were wondering, things have improved since my last post, at least mentally and emotionally. Physically, things still suck and are sucking more each and every day. My last fall had been back near the end of January. The keyword there is "had". In mid-June, I had two falls both coming within a week or so of each other. On my fall Richter scale these two falls were minor in comparison to my other most recent ones. First one was more of a roll and fall as I rolled out of our bed, which is pretty high up to make it easier for me to get in and out of, did a 360° spin in mid-air, and managed once again to bang my head in almost the exact same spot I did last January when I got a concussion. If my January fall was a 9 out a 10, then I would have to give this one probably a 6. I ended up with a golf ball size lump on the back of my head and a bruise about 6 inches in diameter. Additionally, I banged up both of my knees and scraped and twisted my left ankle as it somehow got wedged under the bed. The most painful part, however, was that I kind of landed in a seated position with my head slumped over to the side and nothing sporting my back as my head came to rest on my nightstand next to the bed. I'm sure it is pretty hard to picture this, but you can take my word for it, it's not pretty. My second fall was more of a slip as I misjudged the seat as I was transferring to from my wheelchair. This fall was worthy of a 3 or 4 rating as the greatest amount of pain occurred to my back as it hit the edge of the chair as I was slipping/falling. Thankfully, my sister was over our house, to assist Tracey with getting me up off the floor. The greatest injury from this incident was a bruised shoulder when I got run over by my wheelchair as they tried to get it out of the way so they could get me off the floor.

As an end result to both falls, slips, rolls or whatever you want to call them, Tracey and I decided to move our bedroom into our family room, which is the largest room in the house. Since most of my recent falls have occurred in and around our bedroom, this move made a lot of sense. It has now become necessary for Tracey to use a Hoyer lift to get me up from the floor, and with all of our bedroom furniture, it has been very difficult to maneuver the lift to get into the correct position. This move would give us a lot more space and a definitive place for all my accoutrements, which now includes, in addition to the lift, my power wheelchair, a commode share and a shower chair.
We are still trying to work out some of the bugs with our bedroom now being located on the other side of the house, but in the long run, it should be advantageous for us.

Enough with the down news. Finally, something positive to talk about. On Saturday, June 30, thanks to a tremendous amount of help from my sister Cari and brother-in-law Joe, I was able to throw Tracey a surprise birthday party. For any of you thinking that you missed Tracey's birthday, it is completely understandable. After all, her birthday is December 29. I figured six months before her birthday would be ample time to surprise her without her suspecting anything. It was also my opportunity to thank our family and friends who came out to help clean up our yard back in April and who have continually shown us support over the past five years. Despite the mid-90s degree temperature, we had about 35 people come out for a good time, good food, good beer (gluten-free beer for me) and a good swim. I think it is safe to say that a good time was had by all, including Tracey's father, who was able to join us for a short time, since he has spent every day that Tracey's mom's bedside, as she continues to recover from a stroke in early May. One notable absence was Tracey's sister Betsy, who volunteered to stay with her mom, so that their dad can have a little respite. For me personally, it was a great day! Sydney and Emily had a great playing with their cousins and friends, I got to enjoy a few laughs with family and friends and enjoy a cigar with my brother-in-law Walt, and most importantly, Tracey was the happiest I've seen her in a very long time. Tracey's mood only got better when my mom and sister told her that she was able to totally relax and enjoy yourself at the party, because they would drive us all home, gave the girls there bath and put them to bed. At the end of the day, we were chauffeured home, (although in all honesty, I was sober enough to drive, there was just no way to fit Tracey and the girls on my wheelchair) and Tracey collected 10 bottles of wine as birthday gifts.

Despite the temporary enjoyment and relief the party brought us the disease progression continues on. Events such as the surprise birthday party or the spring yard cleanup take a lot out of me by the end of the day and usually the next day as well. However, when in the moment, everything seems great, and I have no worries whatsoever. It is truly amazing what being with family and friends can do, to lift one's spirits. The joy that Sydney and Emily bring me on a daily basis (when they're not driving me crazy as a six-year-old and four-year-old are apt to do at times), along with Tracey's willingness to do whatever it takes for me and the girls, continues to be the driving force for me to fight on. Spending fun times with family and friends is just the icing on the cake.

Wednesday, June 20, 2012

Posts 35 - Short and Not Too Sweet

This will be very short one. Not that I don't have a lot to say, it's just that I don't think, or feel, that this is the time to say it. I do feel compelled to say something, however, since I recently jumped back into the blogging after an eight-month absence. I would like to keep the continuity going.

Without getting into specifics (perhaps another time), things have been very tough around the house since last Friday. With the exception of Sunday, Father's Day, which for me was bittersweet (again, a whole another story that I will probably tackle sometime in the future when I'm in a better mood), things have pretty much sucked since last Friday, from both a physical, mental and emotional standpoint. Without attempting to bring anybody down, let me just finish this up by saying that a good cry is beginning to lose its cathartic effect.

Thursday, June 7, 2012

Posted 34 -Back in the Saddle

So, where did I leave off? If memory serves me correctly, it was October 2011, approximately 8 months ago. Why has it taken me this long to post again? I've been asking myself that question for the past eight months. The simple answer would be that I just didn't feel like it, but never one to be satisfied; there must be more to it than that. My mood has not always been the greatest over the past eight months, which has probably been a large contributing factor to me not keeping up with the blog. I try and remain optimistic, but frankly it's getting more difficult to do.

I was looking forward to posting after our second ALS walk in November. Although we fell a little bit short of the total dollar amount raised back in 2010, we still raised more than I expected and again had close to 100 family members and friends join us for the walk. Approximately 10 days later, we celebrated Sydney's 6th birthday by inviting members from her kindergarten class to our house for a party. An event I wasn't sure I'd even get to witness five years ago when I was first diagnosed. That was followed by another holiday season, which I again overindulged with the gift giving to Tracey, Sydney and Emily, which was obviously an attempt at overcompensation, on my part. Nevertheless, we all survived and eventually the credit card bills were paid. The end of December saw another birthday go by for Tracey and at the end of February, we celebrated Emily's 4th birthday with a family party. Again, another milestone that I often wondered whether I would ever see. Finally, March brought the five-year anniversary of my original diagnosis. I've talked many times throughout this blog about that fateful day, so I will not bore you again with the details, except to say that this was a day I look forward to for the past five years, simply because this was a day that 50% of people diagnosed with ALS never see.

The fall and winter months were not only cause for celebration. There were some down moments as well, which in retrospect, was the real reason for my hiatus. Between October and April, I had a rather large decline in my overall level of functioning. Actually, I believe this began during the summer months, but really did not become evident until I returned to the Hospital at the University of Pennsylvania (HUP) for my ALS clinic appointment. Over the past 6 to 9 months I've had my largest decline in both my functional ability and breathing ability compared to any 6 to 9 month period previously. The breathing difficulties, specifically have contributed of late to some swallowing and speaking difficulties. Additionally, throw in a couple of normal winter colds, a debilitating urinary tract infection, and increasing gastrointestinal problems and you have my winter in a nutshell. Of course, there were also the obligatory falls, one of which resulted in a trip to the hospital for a CT scan due to a concern of internal bleeding. Luckily, it only resulted in a tennis ball sized lump on the back of my head and a subsequent concussion that kept me in bed for several days.

Now, maybe you're beginning to see, why my desire to write just wasn't there. Additionally, even though it was a mild winter by everyone's standards, it was still cold enough and dark enough to have an effect on me. Most days I would come home from work, take a nap, have dinner, then 20 minutes or so talking with Tracey and the girls, and then it was off to bed to do the whole thing over again. A pattern that still remains pretty much the same, although I will say, I do seem to have a little bit more energy these days. It seems I function best when the temperature is between 72° to 78° (then again, who doesn't). When the weather is cold, and I mean, anything below 50°, it just takes me forever to get going and the colder it is, the harder it becomes to get my hands and legs moving. When the temperature gets up into the 80s, my strength gets zapped pretty quickly.

As most of you know, and as I already mentioned, I am continuing to work. I am typically in my office three days a week, working from home one day and taking a sick, vacation or personal day once a week as well. I am drastically looking forward to July 1, when we begin working our summer hours. With my summer schedule, I will probably end up only going into the office one or two days a week. The plan is to continue working in September and hopefully last until the winter break. Despite this past mild winter, things were very difficult for me and at this time, I do not believe I will have the strength or energy to continue working through the winter months next year. But then again, you never know!

So again, what has gotten me back on the blogging trail? I'm still not quite sure, but I would venture to guess that good weather and the impending and of the school year are both contributing factors. There was also one event in mid-April that I would certainly be remiss if I did not mention. After all, I’m still feeling the love and support from family and friends nearly two months later. On that April day we hosted our first spring cleaning event in an attempt to get people over to our house to do some yard work, in exchange for food and alcohol. It's amazing what some people will do for free food and alcohol. More than 20 people showed up on a Saturday morning to help with landscaping activities. I had intended to restart the blog after that weekend, because I felt that the friends and family that came that day, deserves some sort of public recognition and that by memorializing them in my blog would give them, and what they did that day some permanence. Better late than never. Tracey and I owe a big thanks to:

(In No Particular Order).

Bill, Cindy, Abby and Sarah Gaffney.

Tommy, Denise, Sean and Eric Kozak.

Dan, Laurie and Megan Sloan, and Dylan and Megan Steltz

Cordalia and Jim Sullivan

Sue and Brian Muhlberger

Anthony and Kristin Rosamilia.

Andy Dera

Sue McQuillan

my sister Cari and father-in-law Walt

... and especially my brother-in-law's Joe Hentz and Walt Freas for not only encouraging Tracey and me to organize the event but for also being the first two people to arrive that morning and for being the last to leave that evening. To say that everyone worked their butts off that afternoon would be a huge understatement. Its days like that, when you find out who your true friends really are.

Additionally, as I mentioned above, the past few months saw me develop serious intestinal problems. Imagine facing sudden and significant urges to use the bathroom and yet you are incapable of getting yourself there, or using the toilet without assistance. Trust me, it's not pretty. (Sorry if this falls under the too much information category, but my little description here does not even begin to explain how badly I felt, or how debilitating this condition has been.) The symptoms seemed to get worse with each meal regardless of what I ate. Finally, about a month ago, things started to get better, when I was diagnosed with Celiac disease and began a gluten-free diet. For those of you scoring at home that means dairy free for Sydney and wheat free for me, although I've also chosen to follow a dairy free diet as well. Over the last month there have been some ups and downs, but I have consistently felt better since beginning the gluten-free diet. Hopefully, now that I'm beginning to retain more of what I'm eating, this will contribute to my overall strength and well-being.

Of course, the diagnosis of celiac disease wasn't the only fun we got to experience in the month of May. The next morning after my diagnosis, as Tracey was on her way to Whole Foods to restock our shelves for my new diet, she received a call informing her that her mother had a stroke. In addition for caring for me and the girls (with a lot of help from my sister and mom), Tracey, along with her brother Walt, somehow managed to visit their mother in the hospital and be there for the father, nearly every day during the month of May. Thankfully, Tracey's mother has survived and continues to slowly improve. Tracey's mom is currently in a rehabilitation hospital in South Jersey. For anyone who may think I could be making these stories up or embellishing the facts, just check with Tracey's friends, Andrea and Kara who came over a few weeks ago to visit with Tracey and to give some support. During the hour they were in our house visiting with Tracey, Sydney's fish died and the dog peed on the floor. (Sydney, of course, want the Tracey to take her fish to the vet. How do you tell a six-year-old that it would cost more in gas to drive to that than the fish cost?). Sydney's mourning period ended moments later, when she found out that she would be able to go to the pet store the next day and get a new fish. How Tracey continues to get up every morning, I have no idea. How we continue to function as a family, I have no idea, but we continue to go on, day after day, believing that good things are right around the corner.

I know at times over the past eight months, several family members and friends have asked about the blog and its status, as well as my status. I hope this will answer those questions for some of you. Again, not one of my most uplifting entries but at least I can take some solace in the fact that five years after my diagnosis, and two years since starting my blog, I'm still able to blog, go to work and enjoy my family and friends. Things could always be worse.