There are several reasons why I have created this blog. First off, for some time, actually, I thought of creating some sort of diary or journal for my daughters to look back on in years to come. Until this day, I have never gotten around to doing it, primarily because my progression has been somewhat slow and I am able to communicate and interact with my family. In Internet blog seemed a good way as any to get started. Although I do not intend this to be the personal and private messages I intend for Tracey and the girls, it is my hope that if it ever becomes necessary, this will be one place they can go to remember me and to gain some understanding as to who I was, what I was like, and what I stood for.
A second reason for a daily documentation of my thoughts, impressions, trials and tribulations is that there is a certain therapeutic value, and benefit in journal writing. As a person who has always done a lot of self analysis and, self-admittedly, is not always the best communicator, expressing my thoughts through writing (or in this case typing, or actually dictating) should hopefully be a beneficial way for me to relieve some stress and anxiety through expression.
Another important reason for starting this blog was to have a place to rant and rave, express my odd sense of humor, and thank those that have been supporting me and my family through this endeavor. With that said, at times over the past couple of years both Tracey and I have been a little disappointed by what we had perceived as a lack of support, understanding, and concern from both family and friends (this would be one of those rants that I recently mentioned). In an attempt to give people the benefit of the doubt, and recognizing that some people may have a genuine interest and concern for my health and my family's welfare, that some family members and friends may feel a bit uncomfortable asking questions, or else may not know what to say. For those people, this blog will hopefully provide some answers to those questions that they are afraid to ask.
Lastly, and most importantly, I hope to give people some insight about the struggles I and my family, as well as others living with ALS and their families, must endure on a daily basis. This blog, hopefully, will be a place where I can be honest and forthcoming. Although my typical response to the question “how are you doing” are usually “okay”, “not bad” or “hanging in there” sometimes, that is just not the case.
Some facts you should know about ALS. ALS involves muscle weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control speech, swallowing and later breathing. Approximately 5,600 people in the U.S. are diagnosed with ALS each year. It is estimated that as many as 30,000 Americans may have the disease at any given time. The life expectancy of an ALS patient averages about two to five years from the time of diagnosis. There is no CURE!
About Me
- DarinM
- 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.
Whew!! I fall in that group of " friends may feel a bit uncomfortable asking questions, or else may not know what to say " ... and feel awkward every time I do say something.
ReplyDeleteJust know that you, Tracey and the girls are definitely in my thoughts and prayers!!
:D
I think your blog is a terrific idea!!!
Great idea Darin, adding you to my blogroll at http://alsbytes.com.
ReplyDeleteHey Darin, you and your family are in my thoughts and prayers. Next time we go to Vegas I will make sure we get chicken wraps on the plane!
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