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.

Wednesday, April 27, 2011

Not that I would ever do anything illegal, but...

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/Amyotrophic Lateral Sclerosis Center, University of Washington Medical Center, Seattle, WA, USA. gtcarter@uw.edu


Significant advances have increased our understanding of the molecular mechanisms of amyotrophic lateral sclerosis (ALS), yet this has not translated into any greatly effective therapies. It appears that a number of abnormal physiological processes occur simultaneously in this devastating disease. Ideally, a multidrug regimen, including glutamate antagonists, antioxidants, a centrally acting anti-inflammatory agent, microglial cell modulators (including tumor necrosis factor alpha [TNF-alpha] inhibitors), an antiapoptotic agent, 1 or more neurotrophic growth factors, and a mitochondrial function-enhancing agent would be required to comprehensively address the known pathophysiology of ALS. Remarkably, cannabis appears to have activity in all of those areas.  Preclinical data indicate that cannabis has powerful antioxidative, anti-inflammatory, and neuroprotective effects. In the G93A-SOD1 ALS mouse, this has translated to prolonged neuronal cell survival, delayed onset, and slower progression of the disease. Cannabis also has properties applicable to symptom management of ALS, including analgesia, muscle relaxation, bronchodilation, saliva reduction, appetite stimulation, and sleep induction. With respect to the treatment of ALS, from both a disease modifying and symptom management viewpoint, clinical trials with cannabis are the next logical step. Based on the currently available scientific data, it is reasonable to think that cannabis might significantly slow the progression of ALS, potentially extending life expectancy and substantially reducing the overall burden of the disease.

PMID: 20439484 [PubMed - indexed for MEDLINE]

Source: Cannabis and amyotrophic lateral sclerosis: hypoth... [Am J Hosp Palliat Care. 2010] - PubMed result

Friday, April 22, 2011

We are experiening technical difficulties. Please stand by:

 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.

Sunday, April 17, 2011

Post 22 - "Catch Me Now I'm Falling"

"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 for me to get in and out of the house, which, for the most part, it has. This past Friday morning, however, I once again found myself in a precarious situation. Not a fall, per se, but more of a collapse. As I was walking out to my car to go to work Friday morning, I felt my right knee buckle as I was descending down the ramp, and I kind of just crumpled downward, falling on my left foot, trapping it beneath me. Ouch!!! I have a few other bumps, bruises and twists associated with this "fall" but my left ankle seemed to take the worst of it.  It is actually in more pain now, then when I fell two days ago. And I can assure you, I have not been walking on it. In fact, I think the pain can be contributed to just the opposite. For the better part of the last two days I've been sitting in my lift chair with my feet up. Currently, I have severely limited mobility in my ankles due to muscle weakness. I am no longer able to pivot on my ankles, which is one of the primary causes of my balance problems. Even in a seated position, I am unable to lift my feet to simply tap them on the floor. To me, it feels like they are cemented to the ground. Therefore, when I have my legs up, or even when I am laying down, my feet just kind of flop. They rest at an approximately 135 ° angle, opposed to a typical 90° angle , which makes it impossible to immobilize my ankle in its natural position. To try and give you a better perspective, when my feet are elevated, my toes are pointing straight ahead at the wall. I am unable to bend my feet so that my toes are pointing at the ceiling. This, is what I believe is contributing to my increasing amount of pain in my ankle. If nothing else, ALS has helped me to become much more aware of my body and much more amazed at how the human body functions. This latest "almost fall" comes about two weeks after my most previous fall. That one occurred as I got out of bed in the morning. I took three or four steps, lost my balance, and down I went. The biggest injury associated with that fall was a bruise on my upper left side, reaching up to the bottom of my butt, about 8 to 10 inches long and 4 inches wide. This made sitting very uncomfortable for a few days. Oddly enough, when Tracey found me on the floor, I was lying on my right side so as best as I could surmise, I probably landed on my left side, bounced when I hit the floor, and ended up on my right side. The fall before that one was probably a week earlier, in which I once again lost my balance coming down the steps outside of our house. Again, luckily just some bumps, bruises and minor scrapes.

For those of you keeping score at home, my biggest injury sustained thus far from falls, has been a non-displaced fracture in my right arm, occurring back in December of 1998 and a broken nose, which occurred just around a year ago. Playing sports for most of my life, bumps, bruises and scrapes are no big deal and something that I'm very used to. What I am struggling with now, after each fall, is my confidence in my ability to walk without assistance, and of course, the fear of falling again. It seems that with each fall, regardless of how severe it is, I become that much more tentative in trying to walk with out assistance. This also includes things like getting up from a chair or just simply moving my feet. With each fall, I become more hesitant to get out of a chair or bed. To me, this equates a loss of independence and reminds me that I continue to progress with the disease.

Although I have been somewhat limited from suffering major injuries from falling, I can assure that falling is no picnic. It is hard to describe what it is like for me when falling, but most of the time, it appears to me as though the fall is happening in slow motion or as in a dream. I am very aware that I am falling, but yet unable to do anything about it. Because I am unable to regain my balance after a stumble or use my arms to catch myself or brace myself when falling, all I can do is experience the fall and try and enjoy the ride as best I can, which is a pretty harrowing experience. The first thing Tracey and I do after a fall is assess for major injury. Once we are confident that no bones are sticking out or blood is flowing, we usually have a little laugh and joke about the latest circumstances that got me on the ground. After all, there's really not much more we can do at that point. Next comes the recovery process, which usually involves getting me into an upright position, which in itself, is no easy task. Again, since I have limited mobility in my arms and legs, I must rely on Tracey to manipulate me like a mannequin and get me out of whatever pretzel like formation I have ended up in. Next comes the hardest part, getting me off the ground. Again, depending on which position I have ended up in, and the location in which I've fallen in, this can be quite tricky. Usually, this this involves Tracey getting a chair from the kitchen and positioning it just right. At this point, Tracey will usually assist me in getting me up on my hands and knees. Eventually, she is able to help me get into a position where I can straddle the chair before she ultimately helps lift me up onto the chair. This whole process typically takes about 10 minutes and leaves me thoroughly exhausted.

Obviously, you have no way of knowing this, but I had dictated all of the above information this afternoon around 2 PM. At around 6:30 PM this evening, I left for the emergency room, because the pain in my ankle became pretty severe, in addition to the ongoing swelling. Also, the foot became very warm to the touch, which was something that they had warned us about at the ALS clinic. Actually, the pain really started getting bad around 4 PM but by then, the Ranger game was on, and I had to wait until the game was over before I would consent to going to the emergency room. Thankfully, the Rangers scored the winning goal with about 90 seconds left in the game, or else I would've had to wait until overtime was over before going. X-rays were negative and it turns out that I have nothing more than a bad sprain. The Rangers will be playing next Wednesday night and Friday night, so hopefully, if I fall again it will be on either Tuesday or Thursday night. Or if I am really lucky, I'll end up falling on a night that the Mets play, so at least I'll be spared the agony of having to watch them play.

Let's go Rangers!

Wednesday, April 6, 2011

Post 21 - , And the Assist Goes to...

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 chores was simple. Tracey took care of the inside and I took care of the outside. Unfortunately, for close to two years now, I have been unable to keep up my side of the bargain. My show shoveling responsibilities ended in the winter of 09 when I wound up falling while attempting to shovel and I lay in the snow for about 15 minutes like a turtle on its back. Therefore, this past winter was all Tracey. Needless to say, raising two small children and caring for a physically disabled husband (Take note, the first time I've ever referred to myself as physically disabled), does not leave Tracey with much time for work in and around the house. 

Over 100 strong.  Go ALS Wing Fighters!
During the past several years we have been fortunate to get a lot of great help and support from family and friends. Family and friends were there assisting and supporting at our pretzel sale, as I well as our bake sale. Together, we were able to raise almost $700. At the ALS walk in Philadelphia last November,(and it still blows my mind... I can't thank you all enough!) over 100 friends and family members walked with me around Citizens Bank Park. Altogether, we raised over $15,000, to fund ALS research and support families battling ALS.

Since my diagnosis, we have also been lucky to get some "specialized" help from family members. For the better part of two years, Tracey's father has taken over most of my inside responsibilities. Everything from replacing batteries in the kids toys to changing light bulbs and other small household repairs. Many times over the past three years, we have gazed out of our window to see a stranger walking around our yard, only to soon realize that it was my brother-in-law, Joe. We would often find him on the roof cleaning out the storm gutters, cleaning up the yard, or doing other repairs, unbeknownst to us that he was even coming over to our house. During this past winter we would hear a strange noise at night only to find him out on our driveway with his snow blower, finishing up the job that Tracey always started. Additionally, both of our mothers are always there when we need a babysitter and my sister Cari, has also been a tremendous help, by not only babysitting and helping out with baths, but by always bringing over many a meal. Two weeks ago, Tracey's brother, Walt, told Tracey that he was taking a day off from work and was planning to come to our house with his chainsaw and hedge cutters to clean up our yard from a wild and windy winter. He ended up staying most of the day and helped with a lot more than just yard work. At work, coworkers have been assisting me by getting things out of my car, including me. They have gone out of their way to bring things to my office and have assisted me with at times when I needed it.

Many people, over the past four years, have said to Tracey and I "let me know if I can do anything to help." But the fact of the matter is, asking people for help has never been a particular easy thing for either one of us to do. We are both much more familiar with playing the role of “helper" then "helpee." Although we always graciously appreciate any and all offers to help, it is not something either of us feels comfortable doing. I have previously talked about how asking for, and accepting help, has always been difficult for me, which has still not changed. But I now find myself having to start doing this at times out of necessity, which does not make it any easier. The majority of the disagreements between Tracey and me are about my unwillingness to ask for or accept help from people, including her. If I am truly going to make life easier for myself, I will undoubtedly need to start relying more and more on other people for assistance. Just the thought of that makes me a little bit sad, which I'm sure is a major contributing factor to my reluctance in seeking help. All of those acts of assistance that I mentioned above had one thing in common. At no time did any of those people ask us if they could help, they just did it, and for this Tracey and I have been truly grateful. For them, it has not been a matter of "call me when you need me," or "let me know what I can do to help," they just basically showed up at our door, or in my office, offering assistance. In the immortal words of Robert Frost (let's hear it from all you East Brunswick-Robert Frost elementary school graduates), “... and that has made all the difference."

Then,... (circa 1998)
This past Thursday night, I met up with a bunch of friends who I played hockey with, some for the better part of 10 years. The last time we all skated together was almost 5 years ago. This was only the second time since early November that I left the house without Tracey by my side. Spurred on by an old team picture that was posted on Facebook, it was suggested by someone that we all get together for a couple drinks. This was not something that I would have typically said "yes" to, but I was not really given a choice. Three of the five guys who were going out that night told me they would come and pick me up and take me home. Not one of them asked me if I needed a ride, they were just there to provide it (That's the type of guys hockey players are). We hung out for about three hours, drank some beer, watched some hockey games, reminisced about some old times, and made fun of each other like we used to do. We all had a great time. I'm already looking forward to doing it again. 

...and now.  (2011)

Monday, April 4, 2011

CU Seeks Paralysis Breakthrough

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 have isolated a type of cell they think can help repair spinal cord injuries. They’re using stem cells to create it in the lab."