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!

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!

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.

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.

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.

Post 33 - The Collected Unfinished Works of D. Miller

Although I have not updated the blog in a while, it has not been for want of topic. There have been some random thoughts here and there that I felt like talking about, but I just never seemed to get around completing my thoughts. This has been due in part to time constraints. Not that I'm a busy man, but my time is still scarce. I'm usually getting home from work around 4:45 PM and we typically eat dinner between 5:30 PM and 6 PM. This allows me to shut my eyes for a good half-hour, and the rest. After dinner, I'm usually exhausted, and will spend whatever energy I have reading to the girls or watching them play. as of late, I have been finding myself in bed by 8 PM. When I have had the time to blog, the effort of getting the computer, starting the voice to text software and writing, editing and posting to the blog feels like it takes more energy than I have. Over the past weekend, however, I have found the time and energy to put together a compilation of blogs from the past month that I started, but never posted. Enjoy.


The Beginning

School officially began on September 7. Up until this point, I had not worked more than three days in a week, let alone three days in a row, going back to June. During the summer, the district is closed on Fridays, and I typically took a vacation day, one day a week. May is probably the last time I worked three days, since I would usually work from home on Wednesdays to break up the week. I ended up working three straight days the first week of school. A minor accomplishment in itself. The following week, I worked from home on Wednesday, meaning I made it to work four out of five days. Again, another minor accomplishment. I was actually thinking about going for a full five days, when I came down with some sort of stomach virus that sidelined me for a couple of days. In actuality, under different circumstances, I probably would've been able to plow my way through but now, a small headache and a slightly upset stomach, puts me in bed for two days. I did not have enough strength to stand and when I did, I did not have the balance to hold myself up. This past week, I worked Monday through Wednesday and work from home on Thursday. If I really wanted to, I probably could have pushed myself and gone into my office on Thursday, but common sense got the better of me. So instead, I'll settle for another four out of five work week. Since last June, my disease has not progressed that much further, but yet, most things have seemed to have gotten a lot more difficult.

The Trip

During the third week of September, I only went into my office on Monday and Tuesday, because on Wednesday we left for Massachusetts to have Sydney seen by a specialist at Children's Hospital in Boston for her Galactosemia. This was a trip I was looking forward to with a lot of anxiety. Not for Sydney, because I was relatively confident that the doctor would tell us that she was doing great, which he did. The issue for me was the drive. If you recall my blog from approximately one year ago, it was the same time of year in which I had my driving evaluation because my neurologist thought that I should not be driving anymore. The results of my driving evaluation indicated that I should limit my driving to approximately 45 minute's. As my official F. U. to the driving evaluation results and the thoughts and opinions of my clinical team, I drove the full 5 1/2 hours back and forth to Boston. This year, it was not to be. Tracey had to handle the full load. Driving has always been my thing and something that I have enjoyed. In the past, I've driven straight through from New Jersey to Florida, as well as from New Jersey to Northern Maine. Tracey had never driven more than 2 1/2 hours continually. To make matters more difficult, last year, as I drove, Tracey was able to provide snacks for the girls, assist with entertainment and dole out discipline when needed. All tasks that I was unable to do. This necessitated several stops along the way that only contributed to a longer drive. On the way home from Boston, rush-hour traffic, and bad weather contributed to turning a five hour trip into a 7 1/2 hour trip. All in all, Tracey did a wonderful job getting us to and from. For me, however, the trip was a reminder of just how much more my disease has progressed from last year.

The Death

Steve Jobs: February 24, 1955 – October 5, 2011

Like everyone else, I was a little taken back by the sudden announcement of Steve Jobs death on October 5. Death has become a very poignant topic for me. After the first year of my diagnosis, for some unexplainable reason, I became infatuated with reading the obituaries. Not every obituary. I used to scan the obituary page for death notices of people in my age bracket. This gave me a sort of sense of comfort to know that there were other people, around my age with children and families that were passing away. I think the comfort lied in the fact that there were other people and families going through what I and Tracey and the girls were going through. It also made me realize, that in some circumstances, some people didn't have the luxury of preparing for their end and therefore, never learned to cherish their time with family and friends, the way that I have now. I am happy to say that I no longer participate in this somewhat ghoulish practice. Perhaps it is because it has been some years since I have been able to read the newspaper, but I think it was more so because I am able to finally accept and come to terms with my reality. I believe that it helped me to see that death is inevitable for everyone, and that life is what you make of it. I know it sounds cliché, but it is true. Over the past couple years; I have not been as consumed by death as I had been during the first couple years of my diagnosis. Following the death of Steve Jobs several weeks ago, I had read several articles online about his life. As most of you know, Steve Jobs suffered from pancreatic cancer, which ultimately cost him his life. What I did not know, was that we both had several things in common besides being diagnosed with a fatal disease. When it comes to diet, Steve Jobs did not eat any type of meat, except for fish. Although not as strict as him, even prior to my diagnosis, I had virtually eliminated all red meat from my diet and would only eat fish or poultry. Steve Jobs was also a Zen Buddhists. Again, I have not gone that far, but even prior to my diagnosis, I had practiced such things as meditation and self hypnosis as ways to improve my inner peace. This has become extremely important, since one of the theories as to a cause of ALS is stress and anxiety acting as a precipitating factor. To this day, my favorite book remains the Tao of Pooh, which I have probably read close to dozen times and a book that I highly recommend. We have both also tried alternative therapies to attempt to cure what ails us. I have been seeing a chiropractor for almost 3 years and have used acupuncture off and on during that same period. One of the biggest differences between Steve Jobs and me is of course our bank accounts. I have often wondered that if I was able to throw millions and millions of dollars towards a cure for ALS, would it happen? For all of Steve Jobs money (an estimated $8.3 billion in 2010), he was not able to cure himself. The thought that bothered me, immediately following his death was that, if he could lead a healthy lifestyle, both in mind and body, and he had unlimited resources, and he was still not able to cure himself, what chance do I have? Recognizing that pancreatic cancer and ALS are worlds apart, I still sometimes wonder if my attempt at a healthy lifestyle is worth it and am I just biding my time until the inevitable?

The Post

For those of you that have access to my Facebook page, I'm sure you're already aware of what I am referring to. Earlier this week, I was feeling a bit low and had what I have been referring to as "a perfect storm." I was experiencing a day where I was having a physically difficult day, along with a mentally difficult day, and the two kind of joined together and just snowballed from there. As a result, I posted the following update on my Facebook page Tuesday night: "I used to feel so much better after a good cry. Not so much when you are unable to wipe your own nose or dry your own eyes. Have I mentioned lately how much ALS sucks?" Without getting into the specific details that put me over the edge, that comment was more of a reflection of my reaction to statements that were made to me during the previous week at work. During the previous week, a number of people had come into my office and told me how good I looked. Not exactly comments that would make somebody cry. As one friend had said to me when I was telling him this story "would it make you feel better if I told you that that you look like shit?" The honest answer is, yes, sometimes it would. At that particular moment on Tuesday when I reached my lowest, I was thinking to myself that if only all those people that thought I looked so good could see me now. My typical response when people have told me how good I look (and I recognize they're making that statement in relation to how well I look with the fact that I have ALS. After all, I know I'm no Jeff Tisman!) is to respond by saying "you know what they say; it's better to look good then to feel good." Well, on Tuesday I was not looking good or feeling good. I recognize that people tell me how well I look for a number of reasons. These include that I look good for someone who was diagnosed with ALS 4 1/2 years ago. I also know that sometimes people don't know really what else to say. I know that people want to say something positive, and for the most part, with the exception of last Tuesday, I try to maintain a positive outlook and continue to put my best foot forward.
It bothers me sometimes, and I realize that this is totally my problem and/or my perception, that people sometimes minimalize what I'm going through, what I am experiencing, and the extreme effort it takes me to get through the day. When I hear people say "you look good" sometimes... not all the time, but sometimes... what I hear is "oh, I guess things are not that bad." Not too often, I will even here in my head, “what a complainer and a whiner." So, what does all this mean? I'm not really sure it means anything. Do I want people to stop telling me that I look good, and instead tell me that I look like shit? No, not really.

The e-mail

I have talked several times throughout this blog that part of my intent was to leave a message behind for my daughter's in the event that I would not be able to deliver them myself. Hopefully, if it comes to that, this blog may give them some insight to who I was, what I thought, and how they were a part of my life during this period. In short, I believe that Sydney and Emily are the main reason why I am still here today. As I watch them grow up, I become more proud of them every day and my biggest fear is that someday, I may not be able to tell them how much I love them and how much they mean to me. I am also painfully aware that someday, I may not be able to sit with them and start a sentence with "I remember one time when ..." or "I remember the day when...". Therefore, I had the recent idea to create e-mail addresses for both girls and I have taken to sending them quick little e-mails about things like how much I love them, or something that they did or said on a particular day that made me smile. I hope that someday I will be able to sit with Sydney and Emily and read the e-mails together, but I realize that that just may not happen. If that is the case, it will be up to Tracey to decide when Sydney and Emily would be ready to read the e-mails that I have sent them. If anyone else is interested in sending them an e-mail, there addresses are as follows:

Sydney: smmnj16@Gmail.com


Emily: emmnj25@Gmail.com


The e-mails that I am sending the girls are private thoughts between me and them. If you choose to send them an e-mail, please know that I will not be reading them, and that they most likely will not be read for another 10 years or more. If it is something that you would like me to read, I would encourage you to copy me at dmnj16@Gmail.com
The walk

The ALS Walk for a Cure taking place in Philadelphia is exactly 3 weeks from today. As of yesterday, we have raised over $4400. Our goal for this year was a modest $7500 in comparison to the nearly $15,000 we had raised last year. I am still hoping that we will exceed our goal as we get closer to walk day. Additionally, we have approximately 40 people to sign up to walk with us. Our goal is 75, so if you are thinking about joining us on November 5, or if you would just like to make a donation, you can do so by selecting the following link (ALS walk). Remember, if you plan on walking, it is mandatory that you sign up to register to walk. Even if you are unable to walk, or, if you are unable to afford to donate at this time you can still contribute by signing up as a "virtual Walker" and raise funds by having others contribute in your name. Once you have registered, the website can assist you with fund-raising letters and e-mails. I have said this many times, but I'm still overwhelmed by not only all the people that have signed up to walk, but in their dedication and enthusiasm to help fund raise for the cause. I can't thank those of you enough, who have signed up, donated, raised funds, and have continually supported me, Tracey and the girls.

Post 32 - "We Are Family..."

On the evening of Friday, September 2, as most people were heading away from the shore, Tracey, my brother-in-law Walt and I were heading towards the shore to look at a handicapped van that I found on craigslist. Tracey and I had made the decision to buy a used van ourselves after attempting to deal with the Division of Vocational Rehabilitation (DVR). The purpose of DVR is to assist people with disabilities in obtaining or retaining employment. In my case, we were looking for some financial help to assist us with the purchase of a handicapped van so that I may continue to work. Just as I predicted several months earlier, I am now almost totally confined to a wheelchair for mobility purposes. Newly modified vans typically start in the mid-$50,000 range. Price for new vans varies depending on the make, mileage and year of the vehicle. Used vans at dealerships run around $30,000 typically, for a van that is about eight years old, with about 75,000 miles. It sounds like a rip-off to you, it is. The problem is that DVR will only provide you with financial assistance if you buy a new van or a used van, through a state approved dealership that is less than three years old, with less than 30,000 miles. Used vans meeting this criterion often cost around $40,000 or more. DVR only assist with the cost of the van modification and not the van itself. So, for a new van costing $55,000, DVR would provide me with anywhere from $12,000-$15,000 to help cover the cost of the van and probably around $8000-$10,000 to cover the cost of a used van meeting their criteria. With DVR fails to realize is that if I could afford $55,000 for a basic, no-frills, no extras, handicapped van, then I probably wouldn't need the $12,000 or so they would give me. I can even begin to explain to you, the bureaucracy and red tape involved in going through this process with DVR. And I am someone who is familiar with DVR, as we work closely with them in getting student services. I do not know how anybody who is not familiar with the system, or has limited education or a mental disability is able to get services. I am a person with a Masters degree in Social Work (not that that makes me smart but it does provide me with some insight to social service agencies) and over 10 years administrative experience in working with government agencies, and I had difficulty following the logic and understanding their process. In the end, it was just much simpler to buy something used from a private seller, at a much lower cost, and pay completely out-of-pocket. I would really love to know how much of their budget goes unused because the regulations and requirements, I'm sure, make it prohibitive for people to use. Maybe someday when I have time on my hands I will look into this. For most people who are working, it would probably make more sense and obviously be much easier to go on disability than to access these services. Luckily, we could afford to pay out-of-pocket and get something at a reasonable price. Otherwise, I would've been forced to go on disability much sooner than I would have liked. Of course, going on disability means the government is now giving me a check, paying my health insurance, and no longer collecting payroll taxes. I can assure you, the government would make out a lot better by allowing people to buy used vans from private sellers, rather than going on disability and milking the system, as I would have had to do. I hope the state of New Jersey does something worthwhile with the money that I saved them. In the end, we ended up purchasing a 2003 Dodge Caravan with 82,000 miles for $8500 (similar vans at dealerships were going for between 15,000 and $20,000, and of course, this van is not allowable under DVR regulations). The family that we bought it from was super nice and glad to see the van was going to another family that could use it. The van has a ramp that automatically extends from the side passenger door, allowing me to drive right up into the van and position my chair in the front passenger seat, which has been removed. Thankfully, Tracey no longer has to set up and take down ramps in order to get my chair into the van every time we go some place. We actually had gone to look at another van a week before this. Thankfully, my brother-in-law Walt was able to go with us that time also. Upon first sight, the van did not look like it was in that bad of shape, although it was pretty beat up. The undercarriage of the van, however, was a real piece of crap, rusted throughout and a safety hazard. Without Walt's assistance, we probably would've ended up buying that van that day. Although we consider ourselves very lucky that we were able to find this van at a reasonable price, it still had me down most of the weekend. To me, this was another $8500 that I would rather be spending (or saving) on millions of other things, rather than a handicapped accessible van. For me, it felt like I was selfishly taking money from my family. For those of you counting, that now makes over $13,000, when you include the $4500 we had to spend on the co-pay for my wheelchair, we have spent in out-of-pocket costs in the last four months. You can also add in almost another $900 to cover tax, tags and the cost of some minor repairs and some routine maintenance that we had done on the new van at Lucas Dodge in Lumberton, New Jersey The cost would have been more, but Walt (who has friends everywhere and always bumps into someone he knows where ever he goes someplace) has a friend at Lucas Dodge, who cut us a huge break on the cost. If anyone is ever looking for a Dodge, Chevrolet, or Jeep, Tracey and I cannot say enough about how nice the staff was at Lucas Dodge, and how helpful they were. Overall, I would put the total cost well over $15,000, when you account for everything else we have purchased to make life easier for me. $15,000 that could have gone to college funds, retirement accounts, much needed home renovations, family vacations and dozens of other things. This really does not sit well with me and is just one of the reasons why I'm committed to continue working.
The family that we bought the van from allowed us to drive it home that night under their tags (I told you they were very nice) and now like the rest of New Jersey, we hunkered down and waited for hurricane Irene. When the rain had ended early Sunday evening, Tracey had gone outside to survey for property damage. All she could find was some small branches scattered throughout the yard. During the course of the storm, we did not even lose electricity even though our surrounding area has many tall trees and aboveground electrical wires. On Saturday evening and again during the day on Sunday, Tracey had gone down to the basement to check for flooding. Thankfully, not a drop. We considered ourselves very lucky with our new van in the driveway and our undamaged home, wondered aloud if our luck was beginning to change. On Monday afternoon, Tracey brought some things down to the basement for storage. Still, all clear. On Tuesday, Tracey went down to get something for dinner out of our basement freezer. I heard her open the basement door, take a couple of steps, and then I heard "oh shit!" A couple of seconds later Tracey was back upstairs and telling me that we had about 6 to 8 inches of water throughout the basement. For those of you that do not know, we have a very large basement full of crap. At this moment, we had a very large basement full of wet crap. Not really knowing what to do, I told Tracey to call a plumber. I began first by calling my brother-in-law Joe, followed by my brother-in-law Walt, to see if they could come over to help. Tracey was in tears, the plumber could not come for another hour, Joe was not answering his phone and Walt was on his way home from work. I was confined to my chair, unable to do anything. Eventually, Joe was able to come over and tried to get the sump pumps working. We would later find out that one of the pumps had probably stopped working a while ago and the second one must have stopped sometime between Monday afternoon and Tuesday evening. Walt, who happens to be in sales and works for a company that sells plumbing equipment happened to have two sump pumps in his van that he was recently demonstrating at a tradeshow. Still dressed in his business attire, Walt managed to wade through the 8 inches or so of water and installed both sump pumps, so we could begin the process of drying out the basement. In the meantime, Joe, along with Tracey's father had also arrived by now, was helping Tracey get as much stuff out of the basement and into the backyard. As everyone was buzzing around me, going in and out of the house, going down and back up from the basement, all I could do was sit. This was one of the most helpless feelings I felt since my diagnosis. I felt like a lump of raw meat, and not even a good cut of meat. Had I been healthy, maybe I would have recognized that the sump pumps had stopped working, which would have prevented this mess. Maybe I would have recognized that one of the sump pumps had stopped working a while ago and had it replaced. At the very least, it could have been handling the cleanup and taking care of my home like I'm supposed to. Both Joe and Walt returned several times over the next few days, to assist Tracey with the cleanup. I really don't know what we would have done without their help. Tracey's mom and dad, along with my mom and sister, pitched in whenever they were able. Tracey, in addition to getting me up and dressed for work, driving me back and forth, and taking care of the girls and our dog (by the way, she has ringworm), cooking meals, doing laundry and everything else on her plate, worked from morning to night, clearing out the basement and scrubbing it down with a bleach solution to prevent mold.

After a few days, when we had time to reflect, we both realized that things could have been much worse and many people did have it worse. Tracey and I were both very grateful that not only do we have family that lives close, but that they're willing to drop everything to come help us when we need it. As a final culmination to the week's events, yesterday I had a slight mishap in the shower, when I fell off my shower seat into the tub. Thankfully, it was not that far of a fall and landing in the bathtub is not as bad as falling on a hardwood floor or concrete. Unfortunately, being 6'2" and falling into a bathtub that is maybe 4 1/2 feet long is still not that comfortable. To make matters worse, as I fell, I knocked a bottle of shampoo into the tub, which I proceeded to fall on, thereby covering myself and the entire tub in shampoo, making it that much more difficult for Tracey to move me. After some considerable effort, Tracey was able to get me onto my back and then into a seated position, but that was the best that she could do. We were faced with two choices. Call 911 or call Joe. I opted for my brother-in-law, who once again immediately came over. After all, what could he have better to do on a Sunday morning than get his wet, naked, dead weight, brother-in-law out of a bathtub.

I would be remiss without mentioning two more events that took place over the past week. Last Sunday, my sister Cari and brother-in-law Joe celebrated their 18th wedding anniversary. Tracey and I took the girls over to their house to celebrate with them. Sydney and Emily had one last swim in the pool for this summer with their uncle, we enjoyed a barbecue dinner and had some fun playing Wii. It was a fun, quiet evening spent with family marking a milestone. This past Friday, we also marked a milestone of sorts. On Friday morning, my father-in-law concluded more than six weeks of radiation treatment for cancer. Apparently, at Fox Chase, where he was being treated, they have a tradition of ringing bells. Whenever a patient concludes their treatment. My mother-in-law thought it would be nice if the family could get together to have our own bell ceremony to honor my father-in-law. Friday evening, Tracey, I and the girls joined my mother and father-in-law, along with Tracey's brother Walt and his family in celebrating my father-in-law's recovery. We spent about two and half hours in a restaurant eating, drinking, laughing and having a good time. As bad as I felt about myself, after laying out the money for the van and as I sat around and watched everyone else take care of what I perceived as my responsibility, none of those thoughts crept into my mind, when I was with my family celebrating life events. I think what made this even more poignant and inspired me to write about this today, where the thoughts of September 11 and what so many other families went through and continue to go through. I don't mean to sound cliché, but I can't thank the people who lost their lives that day, and their families enough for allowing me to appreciate the family that I have.

Post 31 - "I feel like a Phoenix rising from Arizona"

If you're anything like me and spend your time on the Internet researching ALS and visiting ALS websites and forums, you might have come across some good news in the past 48 hours. In a recent article published in the journal Nature, researchers at Northwestern University claim to have possibly found the cause of ALS (Cause of ALS is found, Northwestern team says). Although all the ALS websites and forums were abuzz, most people, like me, were cautiously optimistic. Then, this morning, I saw an online article on CNN and a video report by Dr. Sanjay Gupta (Groundbreaking new study finds a cause for Lou Gehrig's disease). I knew instantly that if Sanjay was reporting on it, then it had to be the real deal! After reading several articles on the new findings, I'm ready to remove the "cautiously" from my current optimistic feeling. I know I've made this statement before, but today, this is the best news I've heard regarding ALS... and many other people in the ALS community agree with me. If you do not feel like reading any of the articles, I will try to sum up for you, what they have found. Basically, the leading researcher has found a protein in every ALS patients he has studied over the past 25 years. This protein is responsible for picking up used and/or dead motor neurons (cells) within the body and brings them back to the brain, where they are cleaned up and "recycled" for use again. In ALS patients, it appears as though this protein is not working correctly and the used/dead motor neurons remain in the nerves and block new cells from carrying messages from the brain to the muscles. This new discovery will be beneficial to ALS patients if researchers could find a drug that can either restart this protein, or at least clear the nerves of the used/dead motor neurons. Think of it as that big recycling truck that comes around once every two weeks collecting your bottles. For most of you, the recycling truck takes your used bottles, brings them back to the recycling center where they can be cleaned up and used to make new bottles, which can now be used to carry new beverages. For me, that recycling truck never drives by my house picking up my recycle bottles. Since my recycling bucket is full, I cannot put any new bottles in and thus my recycling system is broken.

 

Realistically, what does this mean for me? That is hard to say. As I said before, optimistically, it is a wonderful thing, but realistically, who knows. Realistically, it could be another two or three years before a drug is developed and ready to be tested (For which I will not be eligible for the drug trial). After that, it would be a minimum of two years that a drug could be approved that could show some benefit for me. And that is assuming that the drug showed miraculous results immediately. Typically, it takes approximately 5 years to bring a drug to market, so it is quite possible that any drug treatment could be as much as eight years or more away. Also, as far as I'm concerned, this drug would probably only stop my progression and maybe provide me with minimal physical improvement. For me, my best bet for a return to normalcy would still probably lie with stem cells, which would be needed to replace all the motor neurons I have lost to date.

 

If it sounds as though I'm being negative, I can assure you, I'm not. As I said previously, this is the greatest news I've heard regarding ALS since my diagnosis, and I'm feeling optimistic about its outcome. I do however want to remain realistic. But then again, who knows. When I went to bed on Sunday night, as far as I knew, they were no closer to knowing the cause of ALS than they were 70 years ago. Then come Monday morning, they have a possible cause, and my man Sanjay is taking to the airwaves.

 

This great news has started me thinking about two things. First, what I like to call my Phoenix list (this is a name I just came up with and will have to do until I can think of something better. Your suggestions are welcome). This is opposite of a Bucket List... a list of things you would like to do before you "kick the bucket." I call this my Phoenix list, because like a Phoenix rising from the ashes, these are the things I would like to do when I am "reborn" and no longer battling ALS. Several things on this list, I have thought about over the last few years but in the last 24 hours, I have really given serious thought about the things I would like to do first, as soon as I am able. In no particular order, my Phoenix list includes:

 

• Taking Tracey back to Napa, California. Tracey and I went to Napa, a little over three years ago for a long weekend. For anyone who has never gone, I would certainly suggest it. And this is coming from a non-wine drinker. During that trip, Tracey learned a lot about wine and since that time has talked about wanting to go back. Now that she is somewhat of a wine connoisseur. The least I can do is drive her around Napa for several days while she samples wine to her heart’s content.
• Taking Tracey and the girls to Disney World. Anyone who knows me knows that I have a personal beef with the rat and that Disney World is the last place I would ever personally choose to go. So far, however, we have gone twice. Both times with family, at my insistence, so that they would be able to help us (and when I say us, obviously, I mean, Tracey) with the kids. It would be nice to go with just the four of us, since Tracey and the girls love Disney World, and do the "family" thing.
• Taking Tracey and the girls camping in Cape Cod. Before we were married, Tracey and I had gone camping several times in Provincetown, Massachusetts. We looked forward to it every summer. We would spend days on the beach, riding bikes and going whale watching. In fact, we got engaged on the way home from one of our Cape Cod camping trips. After we were married, we talked about taking family vacations in Cape Cod.
• Before heading up to Cape Cod, I would just like to pitch my tent in the backyard and spend a night camping out with the girls. I think they would have a great time.
• I would like to make Tracey breakfast in bed, every Sunday morning for a year. Additionally, I would make sure that I or the girls did not bother her to at least noon.

Personally, some things that I would like to do included:

• Buy a new pair of hockey skates. I look forward to that day when I can lace them up, hit the ice, and skate around the rink. To me, there is nothing quite like it when your feet first hit the ice and you take that first lap around. Second to getting back out on the ice, of course, would be to start playing hockey again.
• Go to the batting cages. Just like first getting on the ice, there is nothing like the feeling of squarely hitting a ball with a bat and making solid contact. I would like to swing until my arms got sore and tired. After that, join a softball league. 
• Take a hockey road trip. Back in January 2008, me and two friends hit the road and visited three cities in four nights (Pittsburgh, Buffalo, and Toronto), taking in three hockey games. We also lucked out because the one night we weren't seeing a hockey game, Rutgers happened to be in Toronto playing in a football bowl game. Besides the fun me and my friends had, I got to see some old college friends, and fraternity brothers while in Toronto.
• A guy's weekend in Vegas. Need I say more?

The second thing that I've been thinking a lot about during the past 24 hours is the upcoming ALS walk in Philadelphia in November. Since my diagnosis almost 5 years ago, never has the possibility of a treatment or a cure ever been so real and so close. I feel now that I have to do more than ever to make the above a reality.We already have over 15 people signed up to walk and are well on our way to our first $1000.  If you're interested in signing up to walk with us, and raising money, or would just like to assist in raising money or would just simply like to make a donation, you can do so by selecting this ALS Wing Fighter link.Thank you to those of you who have already signed up to walk and/or have donated to the cause.

 

Post 30 -Courage, Faith, Strength and Hope

 



Getting my birthday gift from Emily

I don't know about you, but it seems like the summer is flying by for me. It seems like it was just a few days ago I was telling you all about my Fourth of July shore house experience. Since that time, I've celebrated a birthday (my 43rd, for those of you counting) and a wedding anniversary (my 8th). Overall, July and the first two weeks of August have not been easy. Whether it is the weather or something else, as of late, I have been experiencing incredible weakness and fatigue. After spending five days at the shore in late July, in which I spent most of the time asleep with a stomach virus, low-grade fevers and my traditional fatigue and weakness, I decided to pay my primary physician a visit. To make a long story short, blood tests indicated that I had a possible blood clot, some fluid around my heart, and a possible diagnosis of rheumatoid arthritis. After some follow-up testing it was determined that a blood clot did not exist. I'm currently in the process of scheduling appointments with a cardiologist and a rheumatologist. After doing some research on rheumatoid arthritis, I've come to find out that symptoms can include fatigue, loss of energy, lack of appetite, muscle and joint aches, and stiffness. Muscle and joint stiffness are usually most notable in the morning and after periods of inactivity. It can also cause weakness of the bones as well as the muscles. Just what I needed, right? These symptoms sound eerily familiar. I was kind of hoping that the fatigue, lack of energy, and muscle pain were just some symptoms of menopause (I saw it on a commercial) but my doctor has assured me that that is not the case.





Some shore time with Sydney





Great Adventure

Although I've taken very little vacation time over the summer, I tried to make the most of it by spending a lot of time with Tracey and the girls. Besides spending some time down the shore, we have also been to Great Adventure, the Please Touch Museum in Philadelphia, Storybook Land, Monmouth racetrack (it was too hard to sneak the girls into the casinos in Atlantic City, and you're never too young to learn how to gamble), and the movies. Additionally, we have spent a good many days at my sister’s house enjoying her pool. One trip that Tracey and I took without the girls was to my quarterly appointment at the ALS clinic in Philadelphia. This trip was somewhat difficult for me than those of the past. Previously, I had always seen the other ALS patients in the waiting room and around the office and had felt somewhat lucky that my disease had not progressed to their level, hoping it would not progress to their level. This time, however it was the other patients in the office who were walking and using their arms and legs in ways that I no longer can and I could not help but think they were looking at me, hoping that they would never progress to my level. Otherwise, this visit was typical of all the rest. I did lose another 5 pounds, which the doctor was not happy about and my breathing score dropped about eight points, which again, they did not seem so concerned about. I had my usual heated "discussion" with my neurologist regarding my vital capacity (breathing) score, drug trial exclusion criteria, and the apparent worthlessness to date of ALS research. By now, she has come to expect my ranting and raving. Then, I was on my way home. No better, no worse... and continually frustrated. 

Monmouth Park





I can honestly say that I am somewhat glad that summer is finally coming to an end. The heat and humidity kicked my ass and forced me to bunker down in the air-conditioning (just so you know, I hate air-conditioning) way too many days that I would have cared for. And although the morning still remains the toughest part of my day and getting up for work and getting out of the house seems to get incrementally harder each day, as the day goes on, I seem to continue to feel better and function better on those days that I get up and get moving. The end of the day, of course, is another story. Because of the heat, the fatigue, the weakness and whatever else seems to be bothering me on any particular day, I have typically been getting into bed between 7:30 PM and 8 PM on most nights, over the course of the last six weeks. Still, when I have to get up and out of bed, whether it is for work or for a family excursion, thankfully, on most mornings, I'm still able to do it. I am hoping that once September rolls around and my regular work schedule once again becomes consistent, that I will be able to get into some sort of groove.



Not only am I looking forward to a new school year, and hopefully, some sort of rejuvenation, but I am also looking forward to Oktoberfest beer and this year's ALS walk in Philadelphia. I have previously talked about the tremendous turnout and support I received last year, when we walked for the first time. Just to refresh your memory, Tracey and I were hoping that we could get about 25 people to join us and that we would be able to raise $2500. It turns out that our estimate was way off. Instead, over 100 people walked with me as an ALS Wing Fighter, and together we raised almost $15,000. Thinking about it nine months later, I'm still overwhelmed by the love, support and generosity of my family and friends. When I look back on that day, I remember the feeling of empowerment and hopefulness that I felt last November. Although I only walked a small portion of the route, I remember telling people that day that I felt like I could walk the full 2 miles. I look forward to experiencing that once again, come this November.



Storybook Land



Once again, I welcome you all to join me and my family to walk with us at this year's ALS walk in Philadelphia, taking place again at Citizens Bank Park on November 5 to help raise funds for ALS research and patient support. We will once again be registered under the name of the ALS Wing Fighters. You can register to walk with us by selecting the following link (ALS walk). If you are unable to walk with us on that day, please consider assisting us by signing up as a virtual Walker and helping to raise funds or by making a donation to our team. Either way, your support would be greatly appreciated. For additional information about the walk, and to see some pictures of our team, I invite you to watch the following video, courtesy of my friends Christine and Larry (Episode V - The ALS Wing Fighters Continue to Strike Back).





 





Post 29 - 4th of July, Long Beach Island (RIP Big Man)

Over the last several years, I have tried to stay away from the "why me" type of thinking. Admittedly, those thoughts occurred quite often early on, but in the last couple of years or so, for the most part, I've been able to move beyond that thinking. Actually, I have been more curious as to "why the F is this happening" in general, rather then "why" is this happening to me, specifically. To me, there is a difference. In attempting to stay away from the "why me" head game, I instead will frequently play a different head game, what I like to refer to as the "If I" game. Often, when I am alone, and my mind begins to wander, I will begin to think to myself, "What would I be doing now" or "where would I be right now,” if I didn't have ALS?

This past holiday weekend, Monday specifically, I got caught up in the "why me" game. We had gone down to Long Beach Island to my in-laws shore house to celebrate my father-in-law's birthday, which also happens to be the Fourth of July. Tracey and I have been down there every Fourth of July since we started dating. Starting last year, was the first year we did not stay over for a long, extended weekend. Between Tracey's parents and her siblings and their families, someone is usually down at the house, especially during this week, but because of various doctors’ appointments, Little League games, and other scheduling conflicts, the house was going to be empty for several days this week. If not for the ALS, we most certainly would have stayed down there throughout the weekend and into the week, at least. Instead, we drove down on Monday morning and returned home later that evening. As I sat on the deck Monday afternoon, overlooking Barnegat inlet, I began to think "why me." There was no use in thinking "if I" because I already knew where I would be and what I would be doing if not for the ALS. All I could think about was "why me." Unproductive to say the least. Here we were at a beautiful shore house, on a beautiful day, with a beautiful forecast for the week ahead, with free time on our hands. An opportunity that most people would thoroughly enjoy, and here it was, just out of reach for me, because of the ALS.

My in-laws, as well as Tracey's brother and his family, who were down at the shore house on the fourth as well, did everything possible to assist me and make me as comfortable as I could be. The simple fact of the matter is that the shore house, along with 99.9% of the rest of the world, is not conducive for somebody with ALS. "Why me?" The house is up on stilts (approximately 15 steps up to the front door), making it very difficult for me to get in and out. There is actually seven steps that lead up to a landing, before going up an additional seven steps to the right at a 90° angle. Because of the landing, I was able to take a short break and sit for a while, after completing the first seven steps, with Tracey's help. I was not concerned about going up the steps since I had practiced several days earlier in my office by walking up to the second floor, again with Tracey's assistance. The problem was coming down. In my attempt to come down the stairs at work, I fell backwards after the first step and hit the back of my head on a cinderblock wall. I don't think I ever hit my head that hard. Although I did not blackout, both my fingers and toes were tingling as though I had just received an electroshock. I ended up with a golf ball sized lump on the back of my head and one tremendous headache. I eventually ended up coming down the steps on my butt.

Should we choose to go to the shore house again, getting up and down the steps will continue to be a formidable task for me. Additionally, once inside the house, it is difficult for me to find a place that I'm comfortable. Currently, we have plans to stay at the shore house for about 10 days at the end of July into the beginning of August, Tracey and I will have to decide very shortly, how feasible that plan really is. Once I get into the house, it will be difficult, if not impossible for me to continually use the steps and to come and go as I please. Although I would have no problem sitting on the deck all day and doing nothing, I don't think the girls will have the same sense of enjoyment. The girl’s favorite activity when we go to the shore is of course, going the beach. Obviously, they can go off and do their thing and I can stay behind, but that kind of defeats the purpose of a family vacation. As much as I would like to go to the beach, the playground, the amusement park and any other activities that we typically do on our summer vacation, I would like to think that they would want me there with them as well. Again, I'm just not sure how realistic this is.

On Monday, I had posted on my Facebook page, the difficulty that I was having getting in and out of the shore house. Several people had responded, offering suggestions on how I may be able to get down the steps by recommending that I slide down, using various methods. Although I am very thankful for the suggestions and glad that so many people wanted to help, this unfortunately would not do the trick. First, I really have no way of getting down to the floor, except by falling. Second, once I slid down the steps, I would still have the same problem in trying to get up, which would probably be just as difficult, if not more so, than trying to walk down the stairs. Tracey and I are both convinced that there is an easier way to get me up and down the stairs, but we just haven't figured it out yet.

For a number of reasons (work schedules, kids’ activities, etc.), Tracey's brother and sister, and their families, are not able to come down to the shore house as often as they used to. We on the other hand, due to the flexibility in my summer schedule and the girl’s ages, have the freedom to come down to the shore house whenever we would like. In fact, if I set my schedule up right, we could probably stay down there for almost the whole summer. Therein lies "La Forza del Destino! In German, it's Die Macht des Schicksals" (Some random TV trivia - Can you identify the TV show associated with those words.  Click here for the answer.  The full line is at the end of the clip). A shore house at my family's disposal that we can’t use. Sometimes it feels like something out of a twilight zone episode.

In a way, ALS has contributed to keeping me stress-free and has saved me a lot of frustration, and perhaps a few dollars. Without the ALS, there are several home improvement projects that I would have undoubtedly attempted that are certainly above my skill set. Sometimes, on a nice day when I'm sitting in our living room looking out into the backyard and playing the "if I" game, I will think to myself that if not for the ALS, I would have built the girls a tree house.... if not for the ALS, I would have put in a paver patio in the backyard... if not for the ALS, I would've cut some trees in the backyard... if not for the ALS, I would've done some major landscaping all around the house. There is a chance that some of these projects may have been completed, if not for the ALS, but the end result surely would not have looked as well as it looked in my head at the onset. I also have a habit of severely underestimating, not only the skill level needed to achieve these tasks, but the time needed as well. Many a time, I have attempted a lot less involved home project in which I underestimated the time to complete by not hours, but by days. This defect in my thinking has also applied to cost analysis. Usually, my initial estimate for completing a home project is two or three times less than the actual cost, thereby increasing my stress and frustration, especially when the final product does not meet my expectations.

On rainy days, I will usually picture myself painting a room or cleaning the basement. Tasks that I can easily accomplish. However, on occasion, I will think to myself "you know, if not for the ALS, I bet I could have finished the basement." Like there was a chance in hell of that ever happening! That's not to say, I might not have given it an attempt. I probably would've spent countless hours researching. Paid many a visit to Home Depot and invested in all sorts of tools and supplies, and actually may have started the project (of course, underestimating the time, cost, and skills needed to complete the project) before realizing how far in over my head I really was. Eventually, I would have had to call in a professional to not only finish the job but to inevitably fix whatever I broke trying to do the work myself.

Some may think that I am torturing myself by playing the "if I" game, but to me it is often a welcome distraction and an uplifting experience for two reasons. First, I feel relieved, that I'm not putting myself through the stress, frustration and second-guessing over starting some of those projects. Secondly, that just because I can't do those home projects now, doesn't mean that I cannot torture myself in the future by attempting to do them, when I am able. Maybe we don't have a nice brick patio now or a finished basement (with my Man Cave), but that doesn't mean that we never will. For now, I can make my list of all the things I would like to do in the future, and if it doesn't happen this summer, then maybe next summer, and if not next summer, then maybe the summer after that one.

For better or for worse, I always try to end things by convincing myself that this is only temporary, that things will get better. That's the thought that I go to bed with every night, and usually the first thing I think every morning. I'm sure someday when I'm not down the shore, I'll be sitting in my backyard out on the patio. That is the power of fate!