- 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.
Wednesday, September 26, 2012
It's a shame that I can't just get up and use the computer in the middle of the night when I have trouble sleeping because it seems that's what I come up with my best stuff. Unfortunately, I only remember bits and students to I fully awake the next morning. Last night was a perfect example. I woke up around 4 AM, which seems to be my usual wake time most nights. It is usually some profound thought or strange dream that causes me to wake up. Usually, I am wide awake. I also seem to wake up quite frequently between 1 AM and 2 AM, but usually have no problem going right back to bed. It is that 4 AM wake-up that I struggle with the most. I will usually drift in and out of sleep for a few hours until I finally get up. This has been a relatively new occurrence over the past two months, and certainly has not helped in providing me energy or enlightening my mood. In fact, since about mid-August, I would characterize my overall mood as "sullen."
Nothing major has occurred over the past two months. No major declines in function, any major falls, aches or pains, no real bad news to speak of. But for whatever reason, I have been in a funk during this period, with many more lows than highs. I have continued working, going into the office about 2-3 days a week and working from home, 1-2 days. One of my primary responsibilities is to facilitate staff meetings. Something I was not particularly fond of, even when I was healthy. My first meeting was towards the end of August, with the majority of my staff (about 30 people). In the days preceding up to the meeting, I became more anxious, wondering whether I could still do it. As my breathing becomes more difficult, it becomes harder to maintain speech, particularly articulation and loudness. The day before the meeting, I even considered bowing out, as the thought of presenting in a conference room in front of my peers began to become very daunting. Suffice to say, I believe the meeting went very well and I was very surprised how well I held up. In fact, at one point during the meeting, I was able to let out an impromptu, semi-half assed rebel yell as we came to one particular favorite agenda topic. Additionally, the two proceeding meetings went just as well, also. I should consider this a major accomplishment, but for some reason I don't.
As many of you know, I was diagnosed in the spring of 2007 and the diagnosis was confirmed that following fall. In the fall of 2008, after asking if I was still working, the clinical team at University of Pennsylvania Hospital informed me that because of my diagnosis, I was eligible to go on full-time disability. In the fall of 2009, after asking if I was still working, the clinical team suggested I go out on disability. In the fall of 2010, after asking if I was still working, the clinical team recommended I go out on disability. In the fall of 2011, they didn't even bother asking. Five years ago, there was certainly some doubt on whether I would be here today, let alone, still working. As far as work goes, my goal is to finish out 2012, and to assess the future during my winter break. At times, though, over the past month, it has been a struggle just to get through this month.
Last week, I went for an assessment on my wheelchair. Lately, and I'm sure this is contributing to my sour mood; the wheelchair has become not only very uncomfortable to sit in (literally, a real pain in the ass), but at times, very difficult to maneuver. As a result, I'll be getting a new cushion for my tender derrière and a new head rest with wheelchair controls built in. Therefore, I will be able to control the wheelchair by moving my head. Now, besides are tremendously high IQs, I will have something else in common with Stephen Hawking. The wheelchair alteration can be seen as a mixed blessing. Depressing, in the fact that it is another step forward in disease progression, but comforting to know that it may result in giving me more independence as far as controlling the wheelchair.
Part of my lethargic mood has also interfered with my usual rah rah over the ALS walk in Philadelphia. The first year we did it, we signed up around April and got the ball rolling. Last year, thinking that we started to earlier the previous year, we kick things off in July. This year, without much fanfare, we finally got things started in late August. Unfortunate, because this is something I really looked forward to for the last two years. I even have actual special reason to be excited this year, not only because of the tremendous success, and more importantly, the personal support I have received over the last two years, but because this year, my best friend will be hosting a special fundraising opportunity. Are you ready!!
On Sunday, November 4, Jeff Tisman of Jeff Tisman Photography will be donating his services by conducting family portrait mini-sessions to the first 10 people who make a donation of $250 or more, with all of the proceeds going to the ALS Wing Fighters! For those of you who do not know, Jeff is a multi-award winning photographer who has not only been featured in many bridal magazines, but is well-known throughout the record industry for his amazing rock 'n roll shots that have been featured in everything from magazines, album covers, and on concert T-shirts.
Beginning at 11 AM, Jeff will take pictures of you, your family, your dog, or whatever, in 20 minute sessions, on every half-hour. You will be given a link so that you can access your pictures online and print at your leisure. First come, first serve, when it comes to reserving your time slot. The sessions will take place at my house, in the backyard (weather permitting), so as to capture the fall experience. If weather is a problem, the photo shoot will take place at Jeff's studio, located in Kingston, New Jersey, just outside of Princeton. Don't waste this exciting opportunity to make all of your friends and family envious, as I've done in the past, by getting breathtakingly beautiful photos of your family.Speaking of the ALS walk, as a reminder, the ALS Wing Fighters will again be participating in the walk to benefit The Greater Philadelphia Chapter on Saturday, November 3, 2012, at Citizens Bank Park (home of the Philadelphia Phillies) in Philadelphia, Pennsylvania. For those of you who are never participated before, I hope you'll consider joining us, and staying for our traditional after walk tailgate. For those of you who have walked with us in the past, I look forward to seeing you again. Remember, registration is necessary to participate. There is no cost to walk or to join our team and assist in raising funds. You can register to walk or make a donation to our team, the ALS Wing Fighters, by clicking the following link. ALS Wing Fighters Thank you to everyone who is already signed up and to those of you who have begun raising funds and have already made donations. I can't begin to thank you enough.