About Me

My photo
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, July 11, 2012

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.


  1. Darin, I've been thinking of you and Tray often during our week in Maine. Now I know why you brought her here, lured by M and M's, to ask her to share your life. It is so beautiful and touched by god everywhere you look. What a perfect setting to start you on your way together. I love seeing you and her together still. Your love is amazing and limitless. What amazing gifts you have given each other ever since. Prayers of comfort and laughter when possible are always streaming your way. Thanks for sharing your friendship with us. Love you all as always.