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.

Monday, October 11, 2010

Post 14 -I'm Still Here

I can't believe it's been over a month since I've last posted on the blog.  It's not like I haven't had plenty of things to say it's just that for whatever reason, I just have not been too motivated to say them. The fatigue that I have been experiencing over the past month has truly come out of nowhere and has even taken me by surprise. It is hard to describe the lack of energy that I have been feeling. It seems that getting up and going to work is getting more difficult each day. Somehow, though, I did manage to make it to work every day that I was supposed to, except for one. Not that I can say that I have been on time every morning but I am getting there, and days when I have to be on time, or even early, for meetings and such, I've been able to do it. It typically takes me now approximately 90 minutes or more to get ready in the morning and get out the door. For those early mornings, I will typically shower and/or shave at night before bed, since these two tasks are among the most difficult things I am still able to do, to cut down on my get ready time in the morning. Even then, it usually takes me about an hour; Tracey is now fully helping me to get dressed in the morning. I am still able to shave and shower independently, but with great difficulty, but after that, I need to rely on her help. Tracey can usually get me dressed in 5 to 10 minutes, but it is the showering and shaving part that can take up to one hour. That is because it is a totally exhausting process for me. One that requires me to take five or 10 minute breaks after each step. Showering alone can take me up to 10 or 15 minutes and leaves me more exhausted than any workout that I have ever done in my life. It will usually require me to lie down for at least 15 minutes to gather some of my strength and energy back.

Part of the reason that getting ready in the morning is taking so much time and causing so much fatigue is because I now have little to no strength in my left arm and hand, rendering it almost useless. Being left-handed, this has made things slightly harder for me. I can occasionally hold a pen to scribble some illegible letters that closely resemble my name and can no longer hold utensils with my left hand. Additionally, this has also unfortunately reduced the number of my sexual partners by 50%, down to one. Some things, like holding utensils or a toothbrush, I have now learned to do right-handed, but some things still remain a left-handed trait only.

Even though I do not notice the difference much with my walking per se, I do notice the difference with my stamina and balance, as well as my ability to navigate steps. This has led to several nervous moments as well as half a dozen minor falls over the past month. Although I still do not wear my leg braces around the house, I will always wear them outside of the home. I have also noticed a diminished strength in both my knees and upper legs. This has made it extremely difficult, and sometimes impossible, for me to get up from a seated position. I am now unable to sit in a chair, unless it has two arms, to assist me in getting up. And even then, depending on how low the chair is, I may still require some assistance to get up. Without going into too much detail, I have also discovered the hard way that I need to use the handicapped stall, when using the bathroom.

After reading this latest update, one may think that I am quickly losing hope and that my mood is continually bouncing back and forth between despair and depression. Though that may be true at times, for the most part, I would have to say that my mood appears to be in a state of flux. That is to say, that I'm truly not experiencing highs or lose but that my mood is kind of just "there". I'm not exactly sure how to explain it and perhaps that is why I have not blogged in over a month, but I kind of feel like I'm just going through the motions, although the motions are getting a little bit more difficult day by day. Perhaps it is because my routine has become so routine. Weekdays, I wake up, go to work, come home, take a nap, eat dinner, go on the computer, take a shower and then go to bed. The only real change to this routine is that if I get home from work late, I will take my nap after dinner. On weekends, I will sleep until between 10 AM and 11 AM (about 10 to 12 hours), get up, maybe have brunch, go on the computer or read the newspaper or maybe watch some TV, and then usually take a two hour nap in the afternoon and then repeat the same nightly weekday routine. I try and interact with the girls as much as I can but as they become more active, it becomes harder for me to do. It has literally come to the point where my 2 1/2-year-old daughter is now stronger than I am and on certain occasions, need to rely on my almost 5-year-old daughter for assistance. Talk about your humbling and humiliating situations.

In any case, I will continue to push on. This coming Thursday, October 14, I will be going to the University of Pennsylvania Hospital for my quarterly clinic visit. This is the one where they tell me how lucky I am and how great I am doing because I'm breathing and swallowing. Lucky for them that I can no longer lift my arms, because in the past I've come really close to wanting to punch somebody in the face. If the mood strikes me, I will attempt to post again a day or two after my visit to let you all know how it went.


  1. "without going into too much detail"???? Why the heck not? I'm aware that your left hand is no longer able to sexually satisfy you..what makes you think hearing about what happened in the bathroom is going into "too much detail"? ;)

  2. Good to see you here and bloggin'!

    (((HUGS))) to you and to Tracy!

    And a little inspirational quote from Dory & "Finding Nemo" . . .


    Dory: Hey there, Mr. Grumpy Gills. When life gets you down do you wanna know what you've gotta do?

    Marlin (Darin): No I don't wanna know.

    Dory: [singing] Just keep swimming. Just keep swimming. Just keep swimming, swimming, swimming. What do we do? We swim, swim.

    Keep swimmin' dude!! And when you get tired, just lay back and FLOAT!! :)

  3. Darin, I'll always have special feelings for you and great college memories of us together. Let's just hope we're all wrong with our Atheist beliefs and that our true life doesn't really begin until we're gone. The older I get the more I'm convinced that maybe we've been mistaken all along ;) Love, Lisa