About Me

My photo
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.

Friday, July 30, 2010

Post 8 - George, ...I mean Darin, is getting upset!

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 other than that, I can't say I did too much. Still, I was completely exhausted by the time that we left.

My view and inspiration for today's blogging and drinking.
Actually, I did help out a little bit more than that. I did help with packing up some of the lighter things around the house, unplugging most of our electrical equipment, such as TVs, computer, etc., and gathered up some of the little knickknacks like vitamins and cell phone chargers, and things of that sort. Needless to say, I was on my feet a lot. Like I have said previously, I do not wear my leg braces around the house. So there was some reason for my fatigue. Our original plan was to leave around 10:30 AM. It was about 1:30 PM when we left our driveway. It was a sunny, hot, humid day when we left. By the time we hit LBI it was a torrential downpour with virtually no visibility. By the time we got to the house and we unloaded the car (of course when I say “we” I mean, Tracey) the downpour had turned into one of those light refreshing summer rains. We had planned to go out Friday morning to do the additional shopping that we would require for the rest of the week. But seeing how the weather was not cooperating and the forecast for Friday was looking good (which they were correct by the way, it is beautiful down here today), I suggested that we head back to the mainland and do our shopping so we would not have to worry about it on Friday. That suggestion was only a minor mistake, compared to the bigger one I was about to make.

Since I had not worn my leg braces for the ride down to the shore I briefly contemplated putting my shoes on, so I would be able to wear my braces while we were out shopping. I guess you can figure out what I ultimately decided. Our first stop was BJ's warehouse to pick up the bulk essentials a family of four needs for a week. Although I had some concerns about how I would make out we did not have much to get, and as long as I was pushing a shopping cart I thought I would be okay. For the most part, I was. When we got back to the car I was feeling a little wobbly in my legs. ShopRite was next on our list. By the time we got the kids out of the car and got to the front of the store were the shopping carts were located, I was pretty much done. That's when it happened. When I got to the place where I knew I was headed, didn't want to go to and certainly didn't expect to get there this soon. At the front entrance of the store was a line of motorized scooters. I had three choices. First, I could go back out to the car and sit and wait while Tracey did a week’s worth of food shopping, with the two girls. Second, I could try and tough it out, using the shopping cart to help balance myself, and get the seven or eight things Tracey asked me to pick up, or I could suck it up, swallow my pride, bury my self-consciousness, and park my ass on the scooter. I entered the world of George Costanza (for those of you not familiar with Seinfeld, you may want to consult with a Seinfeld watcher to get the reference) and chose option number three. At first, I felt like an idiot because I did know how to drive the thing. It was very reminiscent of the first time I tried to drive a stick. After a few minutes, I quickly got the hang of it. The self-conscious thing, however, did not totally disappear. First, whether real or imagined, it seemed as though a lot of people were looking at me and in my mind thinking, why is this guy riding around on the scooter, he looks perfectly fine to me. After all, people are always telling me, either how good I look, or that they couldn't tell I have ALS or something to that effect. It got to the point, where I'm sad to say, when I had to get up from the scooter to get an item from a shelf, I kind of over embellished my weakness to make it obvious to anyone who may be watching me that I did in fact have a physically disabling condition. Talk about pathetic. Like it was anyone else’s business as to why I was using the scooter. Besides the perceived stares (and in an attempt to remain objective, I do believe that only some of them were real), I also want to point out how many complete a-holes were in the store yesterday afternoon. Some people were compelled to walk down the middle of the aisle; other people would just leave their carts in the middle of the aisle and walk away, while some people just stood still talking on their cell phone. Now I have been shopping before, and I know that this is often a frequent occurrence, but here's why I think things were different this time. Previously, at least for me, in all those situations, I was able to either make eye contact with the person so they would get out of my way, try and maneuver around them, gently nudging their cart if I needed to, or would just simply say “excuse me.” That always seemed to work when I was a 6'2" man pushing a shopping cart. It didn't seem to work so well when I was a 3 1/2 foot tall man riding a scooter. Additionally, a fair share of people either saw me coming down the aisle or looked right at me, and still made no attempt to move their cart or get out of the way. I have to admit that on more than one occasion, I came close to showing some people that I was still able to get out of the scooter and was still more than capable of knocking them down! In fact, at one point, I did play bumper cars with someone else's cart, and in true George Costanza fashion, kept on trucking without looking back. I have been told that shopping cart rage does exist, and now I can add one more diagnosis to my repertoire.

The second line I crossed yesterday was in asking people for help. As I have also stated in the past, asking for help is never been an easy thing for me to do, and that is with people that I know very well and trust. I guess, since I was already driving the scooter, I figured what the hell. Now the scooter is all fine and dandy for getting around but when you still have issues with your arms and hands it makes it all but impossible to reach half the items on store shelves. Thankfully, as I mentioned above, I was able to get in and out of the chair to retrieve the items I needed. This was true for all but one item, the bananas. Because of where the bananas were placed they were totally out of my reach and I had to ask a store clerk for assistance. But I was not done yet. I was also in charge of finding a dinner for the night. Ever since Tracey and I started coming down to LBI about 10 years ago we've always had this kind of tradition on the way down to the house. We would stop and pick up a pizza, some wings and some beer and sit out on the deck and have dinner. Since the kids, the tradition has kind of gone by the wayside, but whenever possible, we try and relive the moment. Last night, I thought it would be nice if I got some wings to have with dinner, problem was that I did not have the hand strength to squeeze the tongue's to grab the wings from the wing bar. Again, I had to ask for assistance.

Looking back on my scooter experience, as well as my assistance asking experience, I have to say that I'm not quite sure what to say. I feel very conflicted. One second I'm telling myself “this is all a pretty big deal. I'm slowly but surely losing my independence.” The next second I am telling myself “it's no big deal. I was able to accomplish what I wanted to accomplish and that is the important thing.” In some respects, I guess I am lucky in the sense that I have now crossed that threshold. I can better prepare myself psychologically and emotionally since I am no longer a stranger to the ideas of assistance, both mechanically and physically. I am sure I'll adjust, in time. Just like I adjusted to receiving the news of the original diagnosis, adjusted to not being able to write, button a shirt, or tie my shoes, and adjusted to wearing leg braces. For all of those scenarios, the adjustment was easier than I expected, but still tough to handle and to accept. Besides, if riding a scooter and asking strangers for help, is what's necessary to spend a week at the shore with Tracey, Sydney and Emily, then I'm all for it.

One last note. I officially began my vodka tonic trial (Refer to Post 4 from July 14, 2010) this afternoon on the deck and continued the experiment through dinner. So far, nothing significant to report. Tomorrow night, Tracey and I have plans for dinner. I plan on continuing the experiment with gin tomorrow. I promise to report out on my findings.

Thursday, July 29, 2010

Post 7 - Looking A Little Thin

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 joining our team and walking with us to raise awareness  (and funds, of course) and support for ALS patients and their families. You can join our team, make a donation, or both by clicking on the following link: Philadelphia walk-ALS Wing Fighters. Thanks for your support.

As I talked about above, the ALS walk is only a little more than three months away. I am actually very excited to be participating. It feels good to know I'm trying to do something to help myself and others with ALS. I am particularly excited about the video, inviting you all to join us. I wanted to thank Larry and Christine for putting the final touches on it and getting it up on YouTube.

One question I am frequently asked is "how are you doing?” As I've stated previously, it is not always an easy question for me to answer. I'm hesitant to say "great “because I'm not. I'm also hesitant to say "I feel like crap" because I am making a conscious effort to not be negative. If you were to see me walk or try and maneuver my arms you would know that something was wrong for sure.  It wasn't until recently, when I saw a picture of myself, did I realize how noticeable the muscle atrophy in my arms had become. My legs look only slightly better. In my opinion, I'm beginning to look a little like a stick man. I've attached a picture at the end of this post so you can make your own conclusion. Often, as most of you know, my simple answer to the question, how am I doing, is "okay", and except for a few people, I will rarely go into detail.  For the rest of you, today's your lucky day because I'm going to give you some insight as to how I feel and show you how you can check anytime you want.

On the upper right-hand column of this blog page there is a tab titled "How Am I Doing ".  Underneath that tab is a banner for a website called Patients like Me. This website allows people, who have been diagnosed with life-changing diseases, to share information regarding their condition with other patients who share similar illnesses. The website allows you to chart your condition, symptoms, and treatments as well as provide a forum for discussion with other patients, caregivers and medical professionals.  I have gained more useful information from this website in one visit then I have from all of my doctor visits, combined. By clicking on the Patients like Me banner, you will be taken to my profile page. One of the first things you will notice is a picture of Sydney and Emily sitting next to a hot mermaid. Next to the mermaid you'll see a little multicolored man. This little man is a quick indicator of my disease progression. Progression is measured in four separate areas, the head, the chest, the arms, and legs. The color green indicates no disease progression. Yellow indicates minimum disease progression. Orange indicates moderate disease progression and red indicates severe disease progression.

Underneath the little man, you'll notice several charts. The top chart represents my FRS score. FRS stands for Functional Rating Scale. The ALS Functional Rating helps you keep track of your overall condition by measuring symptoms in the four areas I talked about above. There are three questions for each area: bulbar (chewing and swallowing muscles), activities of daily living (arms), mobility (legs), and breathing. The highest rating, one can receive is a 48. Currently, my rating is a 35. You can follow the progression of my score over the past three years by rolling your cursor over the points plotted on the chart. Your FRS score is determined by a self rating scale in 12 different areas of functionality.

The specific questions asked, and my current level of functioning, is as follows:

Speech (bulbar) - Speech is about more than how your voice sounds. It's how well you feel forming words in your mouth.

  • Response = Normal speech processes
Salivation - Salivation is about how much watery saliva you have in your mouth.

  • Response = Normal
Swallowing - Ability to chew and swallow compared to before you had ALS

  • Response = Normal
Handwriting - Handwriting is about how you hold the pen (with your hand that was dominant prior to ALS onset) and how the words look.

  • Response = Able to grip pen but unable to write. You can hold a pen, even if it is very difficult, but you are not writing more than to sign your name.
Cutting food and handling utensils
  • Response = Can cut most foods, although clumsy and slow; some help needed. You may be able to cut soft meats or fish but you need some help with harder meats.
Dressing and hygiene

  • Response = Intermittent assistance or substitute methods. You might not need any help to dress but you are now wearing clothes that are easier to get on and off. You might have changed the way you put on your clothes. This includes the situation where your arms are normal but you have to sit to dress due to leg weakness or poor balance. You might be getting occasional help to dress, especially if you have to hurry.
Turning in bed - This is about rolling over in bed and pulling up the covers, not your ability to get in or out of bed.

  • Response = Somewhat slow and clumsy, but no help needed. There is some difference compared to before you were ill. It takes more effort to turn OR pull up the covers. One activity could be normal but one is awkward.

  • Response = Walking with assistance. This would include a cane, walking stick, ankle brace, walker, or wheelchair.
Climbing stairs

  • Response = Need assistance. You REQUIRE the handrail or help in some way. You would not take the flight of stairs without either a handrail or a cane or someone helping you.
Dyspnea - Dyspnea is about your level of breathing difficulty during normal activities.

  • Response = Your breathing is unchanged; it is perfectly normal with all activities compared to before you had ALS symptoms.
Orthopnea - Orthopnea is about how your breathing on your back might be different than while sitting or standing.

  • Response = You have no change in your ability to breathe on your back; it is perfectly normal compared to before you had ALS symptoms.
Respiratory insufficiency - Respiratory insufficiency is about how dependent you are on mechanical help for breathing, mostly from BiPAP

  • Response = None. You are not using BiPAP to help you breath. And, your physician has not recommended it to you.

Underneath the FRS scale is my FVC chart. FVC stands for Forced Vital Capacity and is a measurement of lung strength. It measures my ability to breathe independently. As you can see, my score is 88%, which I am told is in the normal range for a man of my age in good health.

Further on down the page you can find a list of my treatments, which includes all prescription drugs, vitamins and supplements, and any other therapies or treatments, I have taken or are currently taking. Additionally, there is a list of the specific symptoms that I am experiencing. You can read those for yourself if you would like. As with above, green indicates no symptoms, yellow indicates a mild symptom; orange indicates a moderate symptom and red indicates a severe symptom.

Typically, I will update my status in conjunction with my clinical visits every three months. My next scheduled visit is on October 14th, check back then, if you are interested in how I'm doing and you're looking for more information then my generic “okay” answer.

Here's the picture that I talked about earlier. Let me know what you think.

Told you I was looking thin!

Monday, July 26, 2010

2010 Greater Philadelphia Walk to Defeat ALS

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

Sunday, July 25, 2010

Post 6 - A Loss for Words

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 of difficulty with concentration and motivation. Now all of these symptoms are not unusual, however, something just felt different this time. I have to admit, it had me a little down. The low point was definitely Thursday night. Earlier that day I had taken Tracey to the airport so that she could catch a flight for Minneapolis. Every two years, the Parents of Galactosemic Children, Inc, hold a conference, and this year it was taking place in Minnesota. Tracey would be going from Thursday until Sunday with my sister, Cari (thanks, Cari for going in my place). For those of you that don't know, Sydney was diagnosed with Galactosemia shortly after birth. Galactosemia is a condition in which the body is unable to use (metabolize) the simple sugar galactose. Treatment requires the strict exclusion of lactose/galactose from the diet. This includes all products containing dairy, and/or legumes. Although Galactosemic children are started on diet restriction at birth, there continues to be a high incidence of long-term complications involving speech and language, fine and gross motor skill delays and specific learning disabilities. Thankfully, Sydney continues to do very well!

Without really knowing it, and due to my hindsight being a perfect 20/20, I now realize that I had a lot of anxiety over Tracey's trip. For a short period of time, we contemplated the whole family going but for several reasons decided it was best that Tracey goes and I stay with the kids. We had planned for my mother to come and stay with us to help with the girls. As soon as I got back from the airport on Thursday afternoon I just did not feel right. I had a very unsettling feeling. Later, as my mom took the girls out into the backyard to play, and I watched from the house, I was completely overwhelmed by my current condition. I started to think about what a great weekend, this could have been.

Naturally, being a stay-at-home mom, Tracey has established incredible bonds with both Sydney and Emily. Me, being a full-time work out of the house father, with a physical disability to boot, has always worried about my ability to bond with the children. With Tracey out of the house for three days, this could have been my opportunity to bond with the girls. Before Emily, Sydney and I had a few daddy and daughter moments. I took her on walks; we went to a show, the playground and a couple of other places where it was just the two of us. Except for when Emily was just an infant, I never really had the opportunity to spend any time alone with her and I certainly have never had the opportunity to spend time alone with both Sydney and Emily.

Watching the girls out in the backyard I begin to think of all the things we could have done this weekend had I not had this wretched disease. First I thought how cool it would be a set up the tent in the backyard and have a camp out. Or better yet, because of the heat, I could set the tent up inside the house so we can have a campout inside. I thought of the wonderful tea parties, that we could've been having, or how much fun it would have been to play dress-up (me, playing the handsome prince, of course). I thought about how I could have taken them to a store and spoiled them with all sorts of toys and gifts. How we could have had a weekend with virtually no limitations. Regardless of what we would have been doing, I just wanted to interact with my two girls like a normal person.

For whatever reason, the heat, my depression, my fatigue or my weakness or all the above, my malaise continued throughout the weekend. It was something that I just could not shake. All of a sudden, at approximately 11:25 AM this morning the fog had lifted. What happened at 11:25 AM this morning, you ask? Tracey walked through the door and all of a sudden, we felt like a family again. I was still tired, I was still weak, but now I was fine. I can't put my finger on it, but all of a sudden, things were different. It had nothing to do with my mother being here (I have to admit that I was a little apprehensive about it before hand). In fact, the girls had a great time spending time with their grandmother and I really can't say that my mom was here to help, since she actually did all the work from preparing the meals, to bathing the kids, to walking the dog. I too, enjoyed spending time with my mom, as we got to chat a little bit and spend some time watching TV together. I can't begin to thank her enough for all she did this weekend and all that she has always done for me, but yet, there's a difference between a boy and his mother and a man and his wife.

For me now, there is a little spring in my step, some wind in my sails, and I can think coherently again, or at least I think I can. I'm actually looking forward to going to work tomorrow, and to spending the following week at the shore with Tracey and the girls. Thank you Tracey for being such a great wife and wonderful mother!

Monday, July 19, 2010

Post 5- You say it's your birthday; well it's my birthday too, yeah...

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 brother-in-law put together a pool party for me on Sunday, with members of my extended family. Reportedly, a good time was had by all.  Thank you Cari, Joe and Tracey!

Now I, personally, have never been one for celebrations, especially ones that put me at the center of attention. One of the few occasions when I think it is totally justifiable to celebrate is for birthdays. To me, birthdays have always signified milestones in life that are worthy accomplishments. I'm not talking about the proverbial 25th, 40th, 50th birthday celebrations, because to me, birthdays number 39 and 41 are just as important as 40. It's all just a number. But, in my opinion, living, learning, growing, and experiencing life is reason enough to celebrate one time a year.

The last two years for my birthday, we spent the day at Great Adventure going on rides and watching shows. We had so much fun that first year that we decided that maybe we would make it a yearly birthday tradition. The tradition lasted all of two years, including that first one. Last summer, I was able to walk in the park without leg braces, access all of the rides, and even lift and hold the girls for short periods of time. This year, I would have no such luck. We have already gone to the park several times this year and each time it has become just a little bit more difficult to navigate around. Because of the weather conditions, we decided that the heat would be too much for me and that I would be better off indoors. The reality of course is, that the heat and humidity this past weekend, was too much for most people, ALS or not, and that after a short time the girls probably would've been just as miserable as me, so the ALS was just one of several reasons we decieded not to go. However, that was not my perception for not going to Great Adventure at the time.   I'm sure Sydney and Emily probably had just as good a time swimming in their aunt and uncle's pool as if we would have gone to Great Adventure.

For me, this birthday marks the first time I've moved from active participant to passive observer.  At age 42, however, this is the most significant milestone I have reached to date, and therefore is cause for celebration. More so than ever, people's birthdays, especialy Sydney's and Emily's, have begun to take on an even greater meaning for me.

Typically, most people will often say that time is going by too fast, especially when it comes to their children growing up. Unfortunately, for me (and this may be difficult to explain, but I'll try and do my best), time is moving by much too slow. Because the future is so uncertain, I would much rather go through life with a fast-forward button. Without getting too depressing, there's still too much that I'd like to see. In addition to the millions of other things, there are first dates (to be honest, I'm not really looking forward to this one), sweet sixteen’s, first loves, loss of first loves, proms, high school and college graduations, and maybe even marriage. These are just some of the things I'm afraid I'm going to miss, because for me, time is moving way too slow. I still have the dream to dance at my daughters’ weddings, and I plan to do everything possible to see that that happens, but sometimes I would consider myself lucky if I just have the opportunity to see it.

So, what does all this have to do with my birthday or ALS? I'm really not sure. But I can tell you that I had a really good day spending time with my family on Sunday and I am already looking forward to my birthday next year!

Wednesday, July 14, 2010

Post 4 – A “Sobering” Reality

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. We have always been told alcohol can cause dizziness, problems with coordination, drowsiness and depression, amongst other things. Since I already had my fair share of the above symptoms I figured that it would not hurt to lessen my intake.

About a month ago, I decided to turn back the clock as a bunch of friends and I went to see a friend’s band, Ridgemont High, New Jersey's premier 80s cover band, play at Sammy Beach Bar at the Bally's Hotel and Casino in Atlantic City. The band sounded great, and we all had a good time. It certainly had been sometime since I had consumed that much alcohol (obviously contributing to the great time). One of the unfortunate symptoms of ALS is muscle cramping. I have experienced, and continue to experience muscle cramping from my toes to my neck on a daily basis.  Muscle cramping will usually occur in my hands, arms and neck during the day and in my legs and feet during the night. My doctors cannot give me any explanation as to the specific AM and PM occurrences (stay tuned... this will likely be my first extended rant and rave but I will save this for another post). On average, I may experience muscle cramping in my hands and arms about five or six times a day. The more active I am, the more muscle cramping I will have. Those neck cramps are a real killer! Sometimes I may go a week to 10 days without having any cramps at night and then they may occur for a night or two before the cycle starts over. The cramps can range in duration from a few seconds to a minute or so and the pain can range from mild discomfort to excruciating. The muscle cramps that I have in my legs at night primarily occur in the in-steps of my feet, and in my calves. The pain usually falls into the excruciating category. On this night in Atlantic City, the cramping in my legs and feet occurred nonstop throughout the night and was very uncomfortable. I honestly do not think that I slept consistently for more than 20 minutes throughout the night. Although I had a good time hanging out with my friends I suspected that the previous nights indulgences played a large part in my very restless and painful attempt at sleep. I was not that concerned, however, since it had probably been at least a half dozen years since I had drank that much and would probably be several years before I had the opportunity to do so again.

Last night, Tracey and I, along with a good friend and her husband, attended a grilled cheese and craft beer dinner at the World Café Live in Philadelphia. We are not talking about a few pieces of Kraft American cheese singles and two slices of Wonder white bread with a Budweiser; we are talking about some kick ass grilled cheese and beer! Although the appetizer and all four sandwich selections were wonderful, there were two standout sandwiches during the night. The first sandwich was a slow cooked and marinated pork loin and Boursin cheese with pineapple mustard glaze, on a roasted onion ciabatta. My other favorite consisted of Gouda cheese with smoked turkey, sage butter, crisp prosciutto and cranberry mustard, toasted on brioche bread. Delicious to say the least! All six beers, brewed by Dogfish Head, we sampled were tasty as well. One of my favorites was the Sah 'tea. A beer, brewed with rye, where they caramelize the wort (the liquid extracted during the brewing process which ultimately becomes the beer) by placing white-hot river rocks in a wooden barrel. The beer was fermented with German Weizen yeast and also contained juniper berries, and a black tea mixture containing cardamom, cinnamon, ginger, cloves and black pepper. My other favorite beer was called Theobroma. This beer was based on an early Honduras recipe, and is brewed with Aztec cocoa powder and cocoa nibs, with honey, chilies, and annatto. The big hit of the night, however, was the dessert. This was an ice cream beer float! It consisted of a dark, rich, rosty stout beer with vanilla ice cream and large chocolate covered cherries. Imagine a thick vanilla shake from Carvel, with some Kahlua mixed in, and you get the idea. You can tell that I take my beer seriously. The amount of beer I consumed last night was in no way near the amount of alcohol I consumed a month ago, but yet the leg cramps returned again. They did not occur as frequently as they did last month, but they were occurring frequent enough throughout the night, more so than usual. Now this could have been a coincidence, but I'm not so sure.

According to my doctor, there is really nothing much that can be done to eliminate the muscle cramping. The only solution she has suggested, and one which has appeared to work, is quinine. Unfortunately, quinine is no longer prescribed because of possible side effects when taken in large doses. Quinine, however, is present in tonic water. Therefore, being a person who is greatly concerned with the overall health of ALS patients, and in the name of ALS scientific research, I will immediately begin my own clinical trial on the effects of alcohol and muscle cramping.  As of now, my primary drink will be gin and vodka tonics, in an attempt to compare the effects of gin and vodka tonics versus beer, with regard to muscle cramping. I assure you that my participation in this endeavor is purely scientific.  As my faithful supporters, equally concerned about my overall health, I encourage you to assist me in this medical experiment by buying me gin and/or vodka tonics whenever possible.  Additionally, I theorize that I will experience less cramping if you buy me the good stuff!  Of course, I will also require healthy subjects to participate alongside me to act as a control group.  Any volunteers?

So to all of you... let's raise a glass (preferably with Absolut) to my future good health… cheers!!

Monday, July 12, 2010

Post 3 -Thanks for the Memories

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, the Trenton Thunder, Double A minor league affiliate of the New York Yankees, had an ALS Awareness Day in which over 50 friends and family members attended on my behalf. The weather forecasters called for a cloudy day with the temperature in the 80s, with low humidity. They weren't even close. The sun was out in full force and the temperature was at least in the mid-90s, with the humidity something like 248% (okay, maybe I exaggerated that last part, but it was really, really bad!). The nice part about this was that everybody showed up despite the brutal heat. At the end of the day I knew I was probably the only one in the group that actually cared about the game. Everyone else was there because of me and for that I am truly thankful. Additionally, because I was responsible for selling over 50 tickets the ALS Association gave me the opportunity to throw out the first pitch. One of my best friends, Jeff T., photographer extraordinaire, portraits a specialty, (stay tuned for a possible ALS fundraising opportunity involving Tismam Photography. Details to follow) was unable to attend the game that day, because he had a wedding to photograph in North Jersey that afternoon. Recognizing that this was a special day and a special opportunity for me, Jeff called the bride and moved their meeting time back an hour, just so he could show up to photograph me with my family on the field and me throwing out the first pitch.

Last fall, Tracey's brother's family was having a garage sale. My 14-year-old niece, Samantha F., not having that much that she wanted to part with, but yet wanting to be involved, decided that she was going to bake cookies to sell at the garage sale. She also decided by herself that she was going to take all of the money she made selling her baked goods, and donate it to the ALS Association.

Back in May, when sending out an e-mail informing friends and coworkers of ALS awareness month, I got an unexpected response from a former coworker and current friend, Kolman K. Paraphrasing, it went something like this - hope you're feeling okay. By the way, I am registered to do a 75 mile ALS awareness bike ride, dedicated to you next month. He ended up raising almost $1000, based primarily on the donations of former and current coworkers.

Last month the ALS Association gave me the opportunity to raise additional funds for our ALS walk team by selling soft pretzels and soda at a Boscov’s department store in South Jersey. Most of my family members came out to help sell. My 11-year-old nephew, Jimmy F., was there to help as well. He did a lot of the running around and, heavy lifting that day. More than enough work to earn a pretzel or two and a few sodas, of which he certainly had and then some. However, each time he took a pretzel or a soda he reached into his wallet and took out a dollar to put into the cash drawer despite my best efforts and those of our family to get him to just take one.

This coming October my friend’s Christine H. and Larry Z. will be getting married. They have been planning this wedding for several months now. A few months back, Christine approached me to get my opinion about the wedding favors for her guests. Christine and Larry's idea was, rather than spend a few bucks on some trinket for the guests they wanted to make a donation, on behalf of their guests, to an ALS charity of my choice.

There is an old adage I'm sure you have all heard,”actions speak louder than words”. I in no way mean to criticize those that have previously offered their help or support, and readily admit that I have turned down offers of help more than I should. With that in mind, I would like everyone to know that Tracey and I do truly appreciate the offers of help and assistance. But accepting help is never an easy thing to do, especially for someone with ALS. The disease does not only rob you of your independence, but can also shred confidence, self-esteem and self-worth. Accepting help, or even acknowledging that you need help, with everyday tasks that you were once able to complete with ease, and feel that you should still be able to complete, does nothing to increase those feelings of helplessness.

So, to all of my family, friends, coworkers, and to whom ever else may be reading this, I want to thank you on behalf of myself, my family and ALS patients everywhere for your past, present and future support and assistance!

PS - Happy 76th birthday, Nana

Sunday, July 11, 2010

Post 2 -What Was I Thinking?

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 of you that did not know, typing more than three or four words on a keyboard is difficult, if not impossible for me, depending on the day. Therefore, I have been using a speech to text software program for whenever I need to do a lot of typing. I have also been using the software at work. Overall, it has been a tremendous help, and I have to say it works very well. There are times however, that it does make mistakes with spelling and grammar, and I do not always catch them.

So, how was my day today, you ask? Actually, it started off very well. I was feeling very rested and relaxed this morning. Then at lunch time my oldest daughter began to choke on a chicken nugget. Nothing serious, but it did scare her. Because she got herself so upset she ended up throwing up her chicken nuggets all over the floor. Tracey sprung into action first and tried to get Sidney to calm down and get her to the bathroom. I, obviously, with less spring in my step, attempted to provide ground support. The first order of business was to get the dog to stop eating the puke and get her in her crate. Next, I noticed Emily coming over to investigate the situation. Before I go any further I should explain to everyone that I have lost most of the muscle in my shoulders, arms and hands. Although I do have a lot of difficulty walking, and usually wear leg braces, I do not wear them around the house, since I am still able to walk short distances. The main area of weakness in my legs is in my ankles. Therefore, I have a lot of issues with balance and stability. Now back to the story. In an attempt to prevent Emily from reaching the danger zone, I attempted to step over the puke while using the wall for balance. Bad move! I ended up losing my balance and falling ass backwards into the puke! Tracy, of course, hearing the bang of me crashing to the floor, let out a yell and came running. Fortunately, all that was hurt was my pride (although I did bruise up my left forearm a little bit). Luckily, Tracy and I were able to have a good laugh over it and the dog got a midday snack.

Saturday, July 10, 2010

Why Blog?

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.