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.

Saturday, March 12, 2011

Post 18 - Falling off the Wagon

Well, if you perused my Facebook page within the last couple of hours or so, you will see I've called an end to my tonic experiment. If you don't know what I'm talking about, go back and read my blog posting from July 14, 2010 (Post 4 - A “Sobering” Reality). The results, I have found, were inconclusive, and my reasons for stopping the experiment are twofold. First off, I have really missed the taste of beer. Not that I had abstained from beer completely during my experiment, but I did opt for the vodka or gin and tonic a number of times as an alternative. The second reason for stopping the trial at this time was due to the significantly fewer episodes of cramping I have experience in my legs and arms over the past several months. This I attribute to any one of three reasons. First, for whatever reason, maybe I'm just not getting the muscle cramps like I used to. That would be good. Second, since I have cut down considerably on my alcohol intake and have been eating somewhat healthier, perhaps this has played a role. Lastly, I am concerned that as my muscles continue to weaken and atrophy, that there really is nothing left to cramp up. I have asked this question before, during one of my clinic visits and was told that that was not the case; however, since I seem to receive contradictory information from visit to visit, I'll ask the question again when I go back to University of Pennsylvania hospital at the end of April. If this were the case, it would be very disheartening for me, since the majority of my cramping now takes place in my neck. If you've never had a cramp in your neck, then consider yourself very lucky. It makes the cramps that you get in your calves seem like a little pinch. I have had muscle cramping in my neck sporadically since my diagnosis. But now it has been occurring on an almost daily basis, sometimes occurring three or four times in a day. My fear is that my neck would follow the same path as my arms and legs. That is, cramping, followed by continuing weakness, until the muscle atrophies, and leaving me with little to no strength. I have certainly been experiencing an increased weakness in my neck over the past four months or so. When it is bad, my chin will rest on my chest, and it becomes a real struggle to lift my head. Even then, I can only keep my head up for about 5 to 10 seconds before my chin drops back down to my chest. Thankfully, this only seems to occur first thing in the morning, at night after a long active day, or at other times when I exert myself. It helps when I'm able to sit in a chair with my back supported. It is even better when I'm able to sit in a chair that also supports my neck.

Getting back to my first reason for halting the tonic trial, there is something about sitting outside and enjoying a good beer. Something that is very difficult to do in January and February.  Last night, I actually had two beers with dinner.  I am sad to say I was definitely feeling "it" before I was even halfway done with my second beer.  Forget about drinking and driving, my concern was with drinking and walking, but I managed to survive the night.  It really felt good to have a beer with dinner.  I was also inspired by the opportunity to attend a grilled cheese and beer tasting at the World CafĂ© Live in Philadelphia. I have previously attended two others and the grilled cheese and beer pairings were outstanding. I also talked about this in the previous blog posting that I mentioned above. Typically, the cheese and beer tastings are limited to about 70 people and have sold out within days of going on sale, however, this time it appears as though they are preparing for a larger crowd. Tracey and I are planning on going to the Monday, April 18 tasting (typically a school night but this will be occurring during the week of my spring break) if anyone would like to join us. I can promise you that you will not be disappointed. Plus, you get to watch me drink beer through a straw.

1 comment:

  1. Know what you mean about the neck problem. My neck started getting weaker and cramping up whenever I yawned or got 'in the wrong position'. Then, it began to get much weaker but not much cramping. Now, it's both. Neck very weak. I wear a polystyrene bead filled collar during the day and have this headrest:- (The bear)


    It is very supportive and can be manouevred and altered to suit.
    If you are on Facebook, I have just started a group.


    Let me know if you would like to join.
    Pauline x