tag:blogger.com,1999:blog-73650871821706099522012-02-16T02:40:12.485-05:00Some 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!DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.comBlogger461100tag:blogger.com,1999:blog-7365087182170609952.post-36518857794645443872011-10-16T21:32:00.000-04:002011-10-16T21:32:40.197-04:00

Although I have not updated the blog in a while, it has not been for want of topic. There have been some random thoughts here and there that I felt like talking about, but I just never seemed to get around completing my thoughts. This has been due in part to time constraints. Not that I'm a busy man, but my time is still scarce. I'm usually getting home from work around 4:45 PM and we typically

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com1tag:blogger.com,1999:blog-7365087182170609952.post-16899382089999504902011-09-12T21:14:00.001-04:002011-09-12T21:18:03.218-04:00

On the evening of Friday, September 2, as most people were heading away from the shore, Tracey, my brother-in-law Walt and I were heading towards the shore to look at a handicapped van that I found on craigslist. Tracey and I had made the decision to buy a used van ourselves after attempting to deal with the Division of Vocational Rehabilitation (DVR). The purpose of DVR is to assist people with

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com0tag:blogger.com,1999:blog-7365087182170609952.post-40788663239753835262011-08-23T21:51:00.000-04:002011-08-23T21:51:47.131-04:00

If you're anything like me and spend your time on the Internet researching ALS and visiting ALS websites and forums, you might have come across some good news in the past 48 hours. In a recent article published in the journal Nature, researchers at Northwestern University claim to have possibly found the cause of ALS (Cause of ALS is found, Northwestern team says). Although all the ALS websites

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com0tag:blogger.com,1999:blog-7365087182170609952.post-38395689575844754462011-08-18T23:06:00.000-04:002011-08-18T23:06:49.539-04:00

   Getting my birthday gift from Emily I don't know about you, but it seems like the summer is flying by for me. It seems like it was just a few days ago I was telling you all about my Fourth of July shore house experience. Since that time, I've celebrated a birthday (my 43rd, for those of you counting) and a wedding anniversary (my 8th). Overall, July and the first two weeks of

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com0tag:blogger.com,1999:blog-7365087182170609952.post-79091641145317865962011-07-07T21:25:00.001-04:002011-07-07T21:27:57.085-04:00

Over the last several years, I have tried to stay away from the "why me" type of thinking. Admittedly, those thoughts occurred quite often early on, but in the last couple of years or so, for the most part, I've been able to move beyond that thinking. Actually, I have been more curious as to "why the F is this happening" in general, rather then "why" is this happening to me, specifically. To me,

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com1tag:blogger.com,1999:blog-7365087182170609952.post-36175006361799597892011-06-23T21:46:00.001-04:002011-06-23T22:16:48.831-04:00

 I will apologize in advance for the length.  It has been sometime since I last wrote.  I had intended to write last week, but I was temporarily sidetracked. More about that later. Earlier this week, my computer came down with another virus, and I was finally able to get it fixed today.  Overall, from a physical standpoint, it seems as though there has been little change over the past three

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com0tag:blogger.com,1999:blog-7365087182170609952.post-63854491742375019152011-06-01T14:57:00.000-04:002011-06-01T14:57:24.365-04:00

Former AC official who went undercover on ‘60 Minutes’ dies of ALS - The Lufkin Daily News: Local & State: "The former Angelina College vice president of Business Servicesdied Monday following a two-year battle with Lou Gehrig’sDisease."

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com0tag:blogger.com,1999:blog-7365087182170609952.post-11414566820479081262011-05-31T21:20:00.000-04:002011-05-31T21:20:59.051-04:00

For those of you unaware, May is ALS Awareness Month. This being the last day of May, I would feel somewhat remiss if I did not get one more post in during the month of May. For me, the month is ending on a particularly good note. On Sunday, we revived the tradition of our annual Memorial Day barbecue. This was a tradition that we started back when we are living in Franklin Park, New Jersey. We

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com1tag:blogger.com,1999:blog-7365087182170609952.post-81033411925323961832011-05-28T20:33:00.004-04:002011-05-28T22:12:34.582-04:00

Since this promises to be a slow weekend, (happy Memorial Day weekend to all) I’ll try and slip this post in, since it is not shaping up to be a particularly uplifting one. Consider that your warning. It has been a while since I've given an update on my physical status. My own kind of "can and can't do" list. So without any further ado, here goes nothing. The good news is that I'm still

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com1tag:blogger.com,1999:blog-7365087182170609952.post-83338558104853754092011-05-24T21:13:00.000-04:002011-05-24T21:13:30.921-04:00

I went to see the gypsy the other night, She looked in my palm looked me in the eye Said you’re a lucky man Some folks got fortunes some got eyes of blue, What you got will always see you through You’re a lucky man -Bruce Springsteen    Lou Gehrig (June 19, 1903 – June 2, 1941) When Lou Gehrig gave his farewell speech, over 70 years ago, he began "Fans, for the past two weeks you have

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com2tag:blogger.com,1999:blog-7365087182170609952.post-49809996367668733362011-05-18T18:17:00.000-04:002011-05-18T18:17:18.418-04:00

Below is a copy of an online article that is in the latest issue of Men's Health.  If you substitute the word, girl for boy, left arm for right arm, and wife for mother, you will have a very detailed description of my experience with ALS.  I am roughly the same age as the subject in the article and have shared many of the same experiences, thoughts and emotions.  In fact, I see the same

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com0tag:blogger.com,1999:blog-7365087182170609952.post-44661264967484436362011-05-16T22:24:00.000-04:002011-05-16T22:24:33.802-04:00

A quick look at my blog tonight revealed that it has been two weeks since I've posted. Honestly, it does not feel like it has been that long. Looking back, with the computer problems I was experiencing, it turns out that I have only written one post over the course of the last month. It has been a month of ups and downs, and thrills and spills. Actually, there really weren't any thrills, but

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com3tag:blogger.com,1999:blog-7365087182170609952.post-22890898802871562752011-05-02T00:00:00.003-04:002011-05-02T08:34:06.797-04:00

 Aurora  On Saturday, June 5, we will be attending Emily's year-end gymnastic show. As excited as I am to see my little girl perform, I am somewhat disappointed, since we will be missing the Great Strides Walk to Cure Cystic Fibrosis (CF) going on that same afternoon in Poughkeepsie New York. That afternoon, my friend Jeff, his wife Vanessa, and their daughter Aurora, with a whole host of

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com1tag:blogger.com,1999:blog-7365087182170609952.post-13539944629229463092011-04-27T21:17:00.000-04:002011-04-27T21:17:43.416-04:00

Computer still not back from tech support.  Hopefully by Friday.  Off to Univ. of Penn hospital tomorrow for quarterly visit.  In the mean time you can check out this medical abstract I found. Cannabis and amyotrophic lateral sclerosis: hypothetical and practical applications, and a call for clinical trials. Carter GT, Abood ME, Aggarwal SK, Weiss MD. Muscular Dystrophy Association/

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com3tag:blogger.com,1999:blog-7365087182170609952.post-54854508703063076842011-04-22T11:43:00.001-04:002011-04-22T11:47:20.365-04:00

 The computer I usually use to post my blog, the one with the voice activated, speech-to-text software, has a virus. I will not be able to get it fixed any earlier then Wednesday.  Until then, you can either peruse my blog archive or watch re-runs of Bewitched if you're having "Darin" withdrawal.  By the way, it took me over 17 minutes to type this post.

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com1tag:blogger.com,1999:blog-7365087182170609952.post-8707321758174991762011-04-17T23:21:00.001-04:002011-04-17T23:29:21.814-04:00

"Help me now I'm calling you, catch me now I'm falling.  I'm in your hands, it's up to you, catch me now I'm falling." Ray Davies That didn't take long. With assistance from the ALS Association of Philadelphia, we had a ramp put in the front of house so as to make the house accessible for, when or if, my wheelchair ever arrives. In the meantime, it was assumed that it would make it much easier

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com3tag:blogger.com,1999:blog-7365087182170609952.post-28330807911483084012011-04-07T19:40:00.000-04:002011-04-07T19:40:13.482-04:00

Scientists try to restore dying motor neurons to potentially stop ALS abc7.com

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com0tag:blogger.com,1999:blog-7365087182170609952.post-10515810788155905102011-04-06T22:04:00.004-04:002011-04-06T22:28:39.655-04:00

Beginning with the past two years, this time of year has become increasingly difficult for me.  For most, with warmer weather, come spring projects. At this time last year, I was still able do some small things both inside and outside the house, including mowing the lawn. By the time last fall came around, almost all of the responsibility fell on Tracey. In the past, the division of household

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com2tag:blogger.com,1999:blog-7365087182170609952.post-980667839617781972011-04-04T19:27:00.001-04:002011-04-04T19:29:21.050-04:00

Listen to an interview regarding a possible breakthrough on stem cell research. The researcher discusses how they have been able to develop astrocytes, which many ALS researchers currently believe breakdown in ALS patients and are therefore the cause behind ALS. The interview is approximately 5 minutes long.  CU Seeks Paralysis Breakthrough: "(Photo Courtesy University of Colorado) CU scientists

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com0tag:blogger.com,1999:blog-7365087182170609952.post-19370094331156225602011-03-27T22:29:00.004-04:002011-03-27T22:49:13.033-04:00

Birthversary: (burth vur sir e) -  The combined celebration of a birthday and an anniversary.    The first time a doctor suggested that I had ALS, I was pretty much un-phased. Whether it was ignorance or denial, I'm not really sure. I can remember the conversation like it was yesterday. The doctor asked me if I ever heard of ALS.  I replied, "Yes, that is Lou Gehrig's disease, right?" Except for

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com2tag:blogger.com,1999:blog-7365087182170609952.post-84822664077438818242011-03-25T22:37:00.002-04:002011-03-27T19:26:36.470-04:00

It's been a strange last couple of days. Saturday was okay and I was actually able to get out of the house for a little while, although I was pretty tired by the time we got back. Sunday was not so good. Monday morning I woke up and felt even worse, both physically and mentally. Somehow, though, I managed to get myself up and get to work. I ended up sitting in my car for about 45 minutes or so,

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com3tag:blogger.com,1999:blog-7365087182170609952.post-80199681893479516292011-03-25T21:11:00.002-04:002011-03-25T22:59:32.576-04:00

I have made some additions to the blog, including the ability to sign up for e-mail notification.  If you're interested in receiving an e-mail notifying you every time a new blog is posted, then please enter your e-mail address in the box at the top right of the page where it says: Follow me by e-mail.  Additionally, I have added a Facebook badge, which will link you directly to my Facebook page.

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com0tag:blogger.com,1999:blog-7365087182170609952.post-12346795002239985982011-03-14T20:20:00.001-04:002011-03-16T19:45:57.610-04:00

ALS TDI (ALS Therapy Development Institute) :: News - Article Details MDA’s Augie’s Quest Expands Testing of Potential ALS Therapeutics With New $2 Million Grant to ALS TDI 03/01/2011 By: Robert A. Goldstein

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com0tag:blogger.com,1999:blog-7365087182170609952.post-43222607686881139692011-03-12T18:18:00.000-05:002011-03-12T18:18:57.085-05:00

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

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com1tag:blogger.com,1999:blog-7365087182170609952.post-31521100807100381762011-03-09T22:20:00.000-05:002011-03-09T22:20:20.094-05:00

Okay, I must admit, I may be a little bit rusty at this. My New Year's resolutions, of which I had two, were for me to start blogging again and to stop procrastinating. I never was any good at making New Year's resolutions. After a quick review of my last post shows that it has been almost 5 months since I last posted on my blog. Over the past five months several people have asked about my blog

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com1tag:blogger.com,1999:blog-7365087182170609952.post-875036900711339352010-10-28T21:11:00.000-04:002010-10-28T21:11:28.271-04:00

 The official ALS Wing Fighters logo  Less than 10 days to go, to our first ALS walk, and the excitement along with the anticipation is starting to build. Our team T-shirts arrived late last week, and although not as exciting as the "new phone book.", it's exciting nonetheless.  Three big "Thank You's" are due here, first to Kristen Ludman for getting us our first, and

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com2tag:blogger.com,1999:blog-7365087182170609952.post-86214342469716271742010-10-12T00:24:00.000-04:002010-10-12T00:24:05.903-04:00

No posts in over a month and now two in 24 hours...? I guess last night's post is just what I needed to get me going again. I feel like a phoenix rising from Arizona. Actually, if you remember last night's post, I said that I had a lot to say over the last month, but I just did not feel like saying it. I guess that now I'm back in my groove I feel like chatting. The month of September saw the

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com1tag:blogger.com,1999:blog-7365087182170609952.post-23443917569839813132010-10-11T00:28:00.001-04:002010-10-11T01:44:07.807-04:00

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

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com3tag:blogger.com,1999:blog-7365087182170609952.post-76312718972648858342010-09-06T23:48:00.000-04:002010-09-06T23:48:46.953-04:00

Forgive me Yoda, for I have waned. It has been 15 days since my last blog. And so it goes... Overall, the last two weeks have been quite difficult for me. This includes two falls, one near fainting spell and a trip to Great Adventure (Although tiring, that was a good thing). For me, summer vacation virtually ended on Monday, August 16. That is the day that the majority of my staff returned to

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com10tag:blogger.com,1999:blog-7365087182170609952.post-18272533418596211692010-08-27T11:29:00.000-04:002010-08-27T11:29:31.078-04:00

Study Identifies New Genetic Risk Factor for Lou Gehrig’s Disease - The ALS Association

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com0tag:blogger.com,1999:blog-7365087182170609952.post-75751856555599204562010-08-22T22:51:00.005-04:002010-08-22T23:04:03.036-04:00

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

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com1tag:blogger.com,1999:blog-7365087182170609952.post-10906864616163099602010-08-16T23:37:00.005-04:002010-08-17T00:22:20.654-04:00

In an attempt to give everyone some insight to what I and my family are going through I had the idea, with the encouragement of some family and friends, to start this blog.  Over the past five weeks I have attempted to be honest and forthright in what I was feeling and experiencing.  Although life with ALS is quite challenging and at times downright disheartening, I am afraid that my blog may

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com2tag:blogger.com,1999:blog-7365087182170609952.post-14960343088966972602010-08-12T00:24:00.056-04:002010-08-12T01:21:55.701-04:00

One of the most difficult things to deal with, while battling ALS is the incredible mind-fuck (Sorry, I never promised you a PG rated blog) it can cause from time to time.  Early on in the diagnosis, it always seemed to me that the more active I was, the more strength I had and the better both physically and mentally I felt. At the time it seemed to make sense. I was still fully functional with

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com1tag:blogger.com,1999:blog-7365087182170609952.post-50982478591901519772010-08-04T21:46:00.000-04:002010-08-04T21:46:33.171-04:00

ALS Association Announces New Research Grants - The ALS Association

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com0tag:blogger.com,1999:blog-7365087182170609952.post-68949534621600068172010-08-02T20:06:00.038-04:002010-08-02T20:33:06.417-04:00

In my post on July 18, I talked a little bit about my distaste for celebrations. A better way to clarify myself would be to say that I am not big into celebrating holidays, but instead, feel it is important to celebrate milestones. I am not a religious person, so religious holidays have very little importance to me. Valentine's Day is just a Hallmark holiday, with little true meaning.

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com5tag:blogger.com,1999:blog-7365087182170609952.post-79084235723399297612010-07-30T23:21:00.001-04:002010-07-30T23:23:16.726-04:00

Did you ever go someplace that you didn't want to go to, but you knew you would end up there anyway, but you do way sooner than expected? This happened to me yesterday. After helping Tracey, pack up the car for our trip down to LBI, and by helping, I mean sitting on my ass most of the time. I did carry out two or three of the smallest bags we had and I did supervise Tracey loading the car, but

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com2tag:blogger.com,1999:blog-7365087182170609952.post-47461051229842604362010-07-29T00:55:00.004-04:002010-07-29T02:04:33.253-04:00

First some exciting news. For those of you that do not know yet, we have officially launched our walk for a cure campaign. Our team, the ALS Wing Fighters, will be walking in the greater Philadelphia ALS walk on November 6 at Citizens Bank Park (home of the Phillies) in Philadelphia.  Please check out the invitation video that I posted to the blog on Monday, July 26.  Also, please consider

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com5tag:blogger.com,1999:blog-7365087182170609952.post-35469767484448817492010-07-27T20:13:00.000-04:002010-07-27T20:13:27.278-04:00

DelMarTimes.net Stem cell research tackles Lou Gehrig's disease

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com0tag:blogger.com,1999:blog-7365087182170609952.post-62217465422794933992010-07-26T23:02:00.001-04:002010-07-26T23:04:06.512-04:00

Follow the link to view your official invitation to join the ALS WING FIGHTERS to walk for a cure! 2010 Greater Philadelphia Walk to Defeat ALS May The Cure Be With Us

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com0tag:blogger.com,1999:blog-7365087182170609952.post-13939029241675190832010-07-25T23:27:00.002-04:002010-07-25T23:29:30.321-04:00

Let me start off by saying that this is my third attempt in the last three nights to post something on the blog. It's not that I didn't have anything to say, it's just that I couldn't find a coherent way to say what I wanted to say. Probably because it has not been one of my better weeks. Throughout the week I have been feeling very fatigued and weaker than usual. Additionally, I was having a lot

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com2tag:blogger.com,1999:blog-7365087182170609952.post-76701369209493393122010-07-19T22:28:00.001-04:002010-07-19T23:24:49.288-04:00

This past weekend, I celebrated my 42nd birthday (pictures to follow). Nothing extraordinary, some swimming and dinner at my sister’s on Friday (my actual birthday), dinner out with my sister, brother-in-law, mother, Tracey and the girls on Saturday night (the bad news being that Emily threw up this time, the good news being that I did not fall in it), and Tracey, along with my sister and

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com2tag:blogger.com,1999:blog-7365087182170609952.post-7064416954535102712010-07-16T23:28:00.000-04:002010-07-16T23:28:16.264-04:00

The California ALS Research Network holds its first summit in San Francisco to great success. - The ALS Association

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com0tag:blogger.com,1999:blog-7365087182170609952.post-89836146336891241892010-07-14T23:30:00.013-04:002010-07-15T09:23:32.522-04:00

Well over a year ago I made a conscious decision, in an effort to be more health-conscious, to curtail my alcohol intake. Not that I was any sort of lush or raging alcoholic, since I only averaged around two or three drinks a week, unless there was some sort of holiday gathering or social occasion, but I thought it was one thing my body could do without. My beverage of choice has always been beer

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com9tag:blogger.com,1999:blog-7365087182170609952.post-18167514517222247332010-07-12T23:00:00.003-04:002010-07-14T13:32:30.022-04:00

After re-reading my first post, and recognizing that one of the reasons for starting this blog in the first place was to “ thanks those that have been supporting me and my family...”I realized that before going any further I should throw out some props to all of my family, friends, coworkers, etc. who have been supportive during this period. Some examples, in particular, stand out. Last summer,

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com2tag:blogger.com,1999:blog-7365087182170609952.post-34748937899392541722010-07-11T00:18:00.000-04:002010-07-11T00:18:31.790-04:00

What the hell have I done? I'm not a blogger! I don't even like getting up in the morning and now I have to update this damn thing every day or so? Oh well. First off, after reading my initial post, I recognize that there are several spelling and grammatical errors. Language Arts was never my strong point, and I will be the first to admit that I'm lucky to spell my own name correctly. For those

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com4tag:blogger.com,1999:blog-7365087182170609952.post-34306523002457132382010-07-10T23:17:00.002-04:002010-07-10T23:27:31.439-04:00

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

DarinMhttp://www.blogger.com/profile/01200716222460215875noreply@blogger.com3