About Me

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For those of you that don't know, I was diagnosed with ALS in March 2007. After two more opinions, the diagnosis was confirmed in the fall 2007 at age 39. This coming August (2010) I will have been married for seven years to an incredible wife, who has supported me throughout. During the course of our marriage we have been lucky to have two wonderful, amazing daughters. Sydney, will be 5 in November. Emily, will turn 2 1/2 in August. Currently, we reside in New Jersey with our Beagle, Trixie.

Friday, March 25, 2011

Post 19 - One Day at a Time

It's been a strange last couple of days. Saturday was okay and I was actually able to get out of the house for a little while, although I was pretty tired by the time we got back. Sunday was not so good. Monday morning I woke up and felt even worse, both physically and mentally. Somehow, though, I managed to get myself up and get to work. I ended up sitting in my car for about 45 minutes or so, waxing poetic and debating whether I really wanted to go into work. By the time I left for the day, I was actually feeling pretty good again and couldn't even remember what I was thinking about earlier that morning. Tuesday, when I woke up, I was still feeling pretty good, both physically and mentally, so it was off to work I went. By the end of the day Tuesday I was feeling very lethargic and very down. On Wednesday, the weather being the way it was, I was not anticipating a very good day, and it lived up to expectations. I can't imagine there's anyone else out there who wants spring to get here faster than I do.

Then came Thursday, where the weather was actually worse than the day before. Because Tracey was substituting in the Mansfield school district on this day, this meant we had to be up and out of the house a little bit earlier than usual. Not to mention the fact that I was planning on staying late at work to attend a parent support group at 5:00 PM and then the Board of Education meeting at 7 PM. I did not end up getting home until after 9:30 PM. All in all, a 12 hour plus day, this is unheard of for me. By the time I got into bed around 10:30 PM., I was feeling quite tired and exhausted but yet somehow, I was feeling a little bit better than I expected. That leads me to this morning. When I woke up I had a sharp pain in my left hip. This pain has been occurring more frequently and appears to be getting worse. It also has been affecting me in the middle of the night. I often get this pain when I sleep on my left side. If I sleep on my right side, then I will often get a severe pain in my right shoulder. Sleeping on my back, we'll often lead to pain in my lower back. Because of this, I will usually awake 3 to 5 times a night, because of the pain, to turn over, which in itself is no easy task (try doing this one might while keeping your arms still at your side). When I had gotten out of bed this morning, the pain in my left hip continued. To make matters worse, my right knee was giving me pain as well. (At this point, I'm sure you're thinking to yourself "what a mess." If so, you'd be correct.) Eventually, the pain in my hip and the pain in my knee had gone away like it always does.

Not exactly a great start to the day. Not really a big deal, since I was not planning on it being a banner day anyway. However, despite the recently cold and wet weather and the long Thursday, I actually felt pretty good today and probably had one of the more productive days at work that I've had in a while. But of course, by the time I got home I had a lot of difficulty getting out of my car and it was a real struggle to get into the house. Therefore, today was just par for the course as far as the last week or so have gone. Typically, I will have a good day, followed by a bad day or some other similar pattern. Usually, somewhat predictable. Instead, over the last week to two weeks, it seems that my mood, demeanor, stamina, and physical and mental strength have been fluctuating throughout the day. What that means, if anything, I have no idea. What has really seemed promising to me though is how relatively well I felt for most of yesterday and today. One day at a time, right?

My biggest fans!

Dealing with things one day at time has never been my strong point and certainly does not come easy for me. I'm the type of person that hates surprises and would much rather know what's about to happen and when. That's why I get so pissed off when the weather forecast is wrong. I'm the type of person that likes a plan. You don't always have to stick to it, but you've got to have one. For me, it has always been necessary to try and anticipate the future, plan for the future. I didn't always stick to the plan, but I had one. Often, when people ask me how I'm doing I'll respond by saying like "you know, just taking things one day at time" but to tell you the truth, that's just something that I kind have been saying but don't really mean. It seems appropriate to say, but in actuality, I really don't know what to say. Some days, I'm worried about the future. Some days, I'm very worried about the future. Some days, I’m optimistic about the future. Rarely, have I focused on the here and now, but that is something I'm learning and really starting to enjoy. As I mentioned before, when I got home from work this afternoon I was completely exhausted. By the time Tracey was able to help me into the house I was just able to make it to my chair, lay back and shut my eyes. Within, what appeared to be seconds, first Sydney and then Emily, were on my lap asking me to read them books. My first thought, was to ask them to "please leave me alone for just a couple of minutes so I could rest" but I quickly realized how lucky I was to have two wonderful children so excited to have their father home. On a different day, I might have been thinking to myself about how I may not have the ability to read to them much longer, or worse, that in the future I may not be around to read to them. But today, without hesitation, I started reading to them. Today was a good day!


  1. What a very sweet photo!

    This early in the morning I can't remember the exact quote that I see in my bathroom every morning... but the gist of it is that,



  2. Thanks for keeping up to date. We're all here for you!!

  3. Darin, you may wish to ask your treatment team about coconut water. It is full of natural electrolytes and tons of potassium. My trainer has me drinking it for post workout cramping. It is all natural, it does have a taste that you need to get used to, but other than that--my muscles have been happy and hydrated. I have not had one cramp since I started it. I like VitaCoco...tasty!