Post 12 - ALS In One Word

I have been a little lackadaisical as of late with updating the blog.  It has not been for a lack of things to say, but instead, the things that I want to say.  I have to admit that the last couple of postings have been a little bit more forced on my part and I have begun to take more notice of what I am saying and how I am saying it.  My last entry is an obvious example of this.  In both my daily life, and in writing this blog, I struggle with the realities of what going through and what I am feeling in competition with trying to maintain a positive attitude. I feel that with my last couple of posts I have gotten away from my original intent, which was to write as an outlet for myself and provide information, and instead have written for an audience.

I know now for some people, my words have been upsetting. But this is the reality of what I, my family, and others with ALS, are going through.  If you happen to browse through the forum on the Patients like Me website, you will see that most people with ALS who comment are trying to face the reality with dignity, humor and realism.  In that respect, I am no different.  So before going any further, I will now provide my disclaimer: Just because my words may be upsetting, the tone of my writing may be a little negative or my mood seems a little down, do not think I have given up the fight. As most of you know, I am as easy-going as they come, but when I want things my way, I can become the most stubborn S.O.B. on the face of the earth.

The last two weeks have been somewhat interesting for me. First, no doubt many of you have heard the new information regarding a possible correlation between head injuries and ALS.  Some people have even gone so far as to question whether Lou Gehrig even had ALS, or simply some other disease related to repetitive head injuries.  Regardless, what this information means for me and others with ALS is irrelevant.  Personally, I do not believe significant and/or repetitive head injuries are a precursor to ALS.  I do have several other theories that I probably will get into some other time. To me, the biggest benefit of this information was that, for a day or two at least, ALS grabbed the headlines and was talked about on the news.  I'm sure you have all heard the saying, "there is no such thing as bad press."

One thing that has begun to concern me is my future independence inside, but also outside the house.  It has gotten to the point where I am reluctant to do anything outside of the house, unless Tracey is with me. This first became apparent the week we spent down at the shore. Although we were in a place where we stayed many times before, this was virtually a new experience for me and for Tracey.  From getting into the house, maneuvering throughout the house, sitting in chairs and on couches, and eating at the table, all required new adjustments and several days for me to get used to. Likewise, when going out for something as simple as dinner or the beach, we now had to take into account the type of chair, the surrounding environment, types of food and drink, since I am having considerable difficulty using utensils and find it difficult to lift a glass to my mouth.  I even went as far as to drink my beer with a straw the other day.  More and more, I need to rely on Tracey for assistance in accomplishing any and all of these tasks.  She has us a wonderful understanding of my limits and abilities and has gotten to the point where she can almost anticipate the amount of assistance I will need and when I will need it.  Primarily for this reason I am hesitant to leave the house without her.

Earlier this month I had plans to go to a Mets game with some friends. (I know they suck, but I've been a fan for almost 40 years and there's not much I can do about it now) I had suggested the idea of a game and even pickd the date back in July.  After experiencing the troubles I had at the shore (see Post 10 - "Vacation, all I ever wanted...") I started to give the game a second thought.  I was afraid of how far I would have to walk from the train to our seats.  I was concerned about having to walk up or down steps to get to our seats.  I was concerned about getting up-and-down from my seat.  I was concerned about being able to drive home from the train after working a full day and then going into the city for a baseball game at night.  I was also concerned with where would we eat, what would we eat, and would I even be able to eat?  These were just some of the things I need to now concern myself with.  Things that I did not consider when I first suggested the idea to my friends and certainly things I never had to consider in the past.

Nearly 3 1/2 years after my initial diagnosis, it still frustrates the hell out of me that no one can tell me why I have ALS, what causes ALS, how do you diagnose ALS, and most importantly, how can you treat and/or cure ALS.  It has been almost 130 years since the symptoms of ALS were first described and approximately 70 years since Lou Gehrig passed from this disease (supposedly), and yet all those questions still remain.

If I were asked to sum up this disease in one word, that word would be... Frustrating. I have previously talked about how physically taxing this disease can be, but what often goes unnoticed, or at least underestimated is the emotional and mental strain.

On another note, over the past couple of weeks I have had a couple of more falls, but thankfully, no major injuries. I will refrain from going into detail, since I have decided to comprise a list of my top 10 falls. Look for that blog post shortly.

Also, we are only 75 days away from the ALS walk in Philadelphia, so, if you have not already done so, please consider joining the ALS Wing Fighters in raising money on behalf of our team for this important cause. If you are unable to walk on November 6, you still have the option of joining our team as a "virtual walker" to raise funds and walk with us in spirit. Otherwise, we would appreciate any donations, no matter how small. It all adds up in the end. You can access our team page by clicking on the ALS Wing Fighters. Thanks again for your everlasting support!