- 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, 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.
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.