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."
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.
Monday, April 4, 2011
Sunday, March 27, 2011
Post 20 - Happy Birthversary
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 the fact that I knew Lou Gehrig died of it (brilliant that I was able to figure out that Lou Gehrig died of Lou Gehrig's disease), some 65 years prior, I really didn't know much else about it. The doctor then told me "I think that is what you have." At the time it seemed like no big deal. I was actually okay with the diagnosis, because I figured in the almost 70 years since Lou Gehrig passed away, there had to be some sort of treatment or cure. After a couple of seconds, I asked the doctor “So what do I have to do?" thinking that there was some medication, treatment or surgery that I could do. When the doctor spoke spoke, it was then that I experienced my first bit of panic. His response was "there's nothing to do." He then began to go into detail about how he came to this diagnosis. At this point it became like Charlie Brown in school-blah, blah, blah, blah. I was brought back into the conversation when I heard him say something about a wheelchair. I said "do you mean I'm going to be in a wheelchair in six months?" He said, "No, but probably within six years." In any case, he was sending me to a neurologist who specialized in ALS for a second opinion before confirming anything. It was on the ride home that denial finally took over. It seemed inconceivable to me at the time that I could have ALS. After all, my whole reason for seeing the doctor was due to some mild muscle twitching, and some arm fatigue. The doctor had told me about the characteristic symptoms of ALS, which included slurred speech, difficulty breathing, falling, and an inability to walk and so on. On my ride home I was thinking that not only do I not have those symptoms, there is no way that I could be diagnosed with a fatal, non-curable disease. When I got home, I kind of halfheartedly told Tracey the diagnosis, still not believing it myself. Still, somewhere deep down inside, I was thinking "what if...” At this point I did what probably 99% of you would do, and that is... Google! On the first website I came to, this is what I found:
What is amyotrophic lateral sclerosis?
Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig's disease, is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles. … Eventually, all muscles under voluntary control are affected, and patients lose their strength and the ability to move their arms, legs, and body. When muscles in the diaphragm and chest wall fail, patients lose the ability to breathe without ventilatory support. Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. However, about 10 percent of ALS patients survive for 10 or more years.
… Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms.
… Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms.
It was that line that stuck in my head that night as I had the first of what was to be many tearful nights to come. (Incidentally, it was the last line of that paragraph “10 percent of ALS patients survive for 10 or more years” that became the inspiration, along with the words of a "stuck up,... half-witted,... scruffy-looking... nerf-herder" that led to the title of my blog, Never Tell Me the Odds.)
So why am I telling you this story today? Well, if you have not guessed it already, it was four years ago today that I had that fateful doctor's appointment. My diagnosis anniversary, if you will. Even though it was four years ago today that I was given, at the time, a potential diagnosis, I could probably track my symptom onset to at least two years prior to that, although no one ever really knows for sure. How am I so sure that this occurred four years ago today? Well, besides the fact that it's probably something no one would ever forget, March 27 also happens to be my mother's birthday. I remember calling my mother to wish her a happy birthday, and then following that up with the news of my possible diagnosis. Now some people may think that the date of March 27 is now somewhat tainted due to the fact of the news that I received back in 2007. But, in actuality, I see it as an omen, an ironic twist of fate, and a sign of good things to come.
To explain why, I'll need to turn the clock back a little over 30 years. Now I will tell you that my memories from that time may be a little sketchy since it was over 30 years ago and due to the fact that I spent most of the 80s and a good part of the 90s trying to repress those memories (that's a story for another time and probably another blog). It was around this time that my mother was diagnosed with severe ulcerative colitis. She had spent the better part of two years in the hospital and my grandmother had come to live with us. Due to the disease, my mother was practically bedridden, and she was not expected to live. I remember having conversations, at the time, with family members about who I wanted to live with. I remember being about 12 years old and going to visit her in the hospital. She was almost unrecognizable to me. Although she was in her mid-30s at the time, she looked at least double that age. My mother had lost a considerable amount of weight to the point where she was so weak, she could not even walk and had trouble talking. Because she was unable to digest food and was so weak, her muscles atrophied to the point where she was only skin and bones. Eventually, due to some experimental surgery and the work of some wonderful doctors, my mother survived. More importantly, I believe that my mother survived due to her will to survive, and the love for her children. I can remember her telling me that everything was going to be okay, and I believed her. I can remember the determination that she had to get better, for her children. I remember how after the colitis issue was resolved, she had to re-learn things like walking, eating and writing again, because she had lost so much muscle mass during her illness. This is how I know I will be able to get better. I like to think that I share that same combination of determination and stubbornness that my mother has, which helped her to survive during that time. There is no doubt that I share the same love of my family that she did for her family at the time and continues to today.
At times during the past four years, I've thought back to that time in my life, some 30+ years ago, and remember what my mother went through, fighting to survive, as a single parent, raising three children. Her battle has served as an inspiration to me and just like her, I will refuse to give in, do what I need to do, and come out victorious in the end. This morning, we celebrated my mother's 67th birthday. I can't wait until we celebrate my 67th birthday.
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 the fact that I knew Lou Gehrig died of it (brilliant that I was able to figure out that Lou Gehrig died of Lou Gehrig's disease), some 65 years prior, I really didn't know much else about it. The doctor then told me "I think that is what you have." At the time it seemed like no big deal. I was actually okay with the diagnosis, because I figured in the almost 70 years since Lou Gehrig passed away, there had to be some sort of treatment or cure. After a couple of seconds, I asked the doctor “So what do I have to do?" thinking that there was some medication, treatment or surgery that I could do. When the doctor spoke spoke, it was then that I experienced my first bit of panic. His response was "there's nothing to do." He then began to go into detail about how he came to this diagnosis. At this point it became like Charlie Brown in school-blah, blah, blah, blah. I was brought back into the conversation when I heard him say something about a wheelchair. I said "do you mean I'm going to be in a wheelchair in six months?" He said, "No, but probably within six years." In any case, he was sending me to a neurologist who specialized in ALS for a second opinion before confirming anything. It was on the ride home that denial finally took over. It seemed inconceivable to me at the time that I could have ALS. After all, my whole reason for seeing the doctor was due to some mild muscle twitching, and some arm fatigue. The doctor had told me about the characteristic symptoms of ALS, which included slurred speech, difficulty breathing, falling, and an inability to walk and so on. On my ride home I was thinking that not only do I not have those symptoms, there is no way that I could be diagnosed with a fatal, non-curable disease. When I got home, I kind of halfheartedly told Tracey the diagnosis, still not believing it myself. Still, somewhere deep down inside, I was thinking "what if...” At this point I did what probably 99% of you would do, and that is... Google! On the first website I came to, this is what I found:
What is amyotrophic lateral sclerosis?
Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig's disease, is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles. … Eventually, all muscles under voluntary control are affected, and patients lose their strength and the ability to move their arms, legs, and body. When muscles in the diaphragm and chest wall fail, patients lose the ability to breathe without ventilatory support. Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. However, about 10 percent of ALS patients survive for 10 or more years.
… Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms.
… Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms.
It was that line that stuck in my head that night as I had the first of what was to be many tearful nights to come. (Incidentally, it was the last line of that paragraph “10 percent of ALS patients survive for 10 or more years” that became the inspiration, along with the words of a "stuck up,... half-witted,... scruffy-looking... nerf-herder" that led to the title of my blog, Never Tell Me the Odds.)
So why am I telling you this story today? Well, if you have not guessed it already, it was four years ago today that I had that fateful doctor's appointment. My diagnosis anniversary, if you will. Even though it was four years ago today that I was given, at the time, a potential diagnosis, I could probably track my symptom onset to at least two years prior to that, although no one ever really knows for sure. How am I so sure that this occurred four years ago today? Well, besides the fact that it's probably something no one would ever forget, March 27 also happens to be my mother's birthday. I remember calling my mother to wish her a happy birthday, and then following that up with the news of my possible diagnosis. Now some people may think that the date of March 27 is now somewhat tainted due to the fact of the news that I received back in 2007. But, in actuality, I see it as an omen, an ironic twist of fate, and a sign of good things to come.
To explain why, I'll need to turn the clock back a little over 30 years. Now I will tell you that my memories from that time may be a little sketchy since it was over 30 years ago and due to the fact that I spent most of the 80s and a good part of the 90s trying to repress those memories (that's a story for another time and probably another blog). It was around this time that my mother was diagnosed with severe ulcerative colitis. She had spent the better part of two years in the hospital and my grandmother had come to live with us. Due to the disease, my mother was practically bedridden, and she was not expected to live. I remember having conversations, at the time, with family members about who I wanted to live with. I remember being about 12 years old and going to visit her in the hospital. She was almost unrecognizable to me. Although she was in her mid-30s at the time, she looked at least double that age. My mother had lost a considerable amount of weight to the point where she was so weak, she could not even walk and had trouble talking. Because she was unable to digest food and was so weak, her muscles atrophied to the point where she was only skin and bones. Eventually, due to some experimental surgery and the work of some wonderful doctors, my mother survived. More importantly, I believe that my mother survived due to her will to survive, and the love for her children. I can remember her telling me that everything was going to be okay, and I believed her. I can remember the determination that she had to get better, for her children. I remember how after the colitis issue was resolved, she had to re-learn things like walking, eating and writing again, because she had lost so much muscle mass during her illness. This is how I know I will be able to get better. I like to think that I share that same combination of determination and stubbornness that my mother has, which helped her to survive during that time. There is no doubt that I share the same love of my family that she did for her family at the time and continues to today.
At times during the past four years, I've thought back to that time in my life, some 30+ years ago, and remember what my mother went through, fighting to survive, as a single parent, raising three children. Her battle has served as an inspiration to me and just like her, I will refuse to give in, do what I need to do, and come out victorious in the end. This morning, we celebrated my mother's 67th birthday. I can't wait until we celebrate my 67th birthday. Happy birthday mom! I love you!
Friday, March 25, 2011
Post 19 - One Day at a Time
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, waxing poetic and debating whether I really wanted to go into work. By the time I left for the day, I was actually feeling pretty good again and couldn't even remember what I was thinking about earlier that morning. Tuesday, when I woke up, I was still feeling pretty good, both physically and mentally, so it was off to work I went. By the end of the day Tuesday I was feeling very lethargic and very down. On Wednesday, the weather being the way it was, I was not anticipating a very good day, and it lived up to expectations. I can't imagine there's anyone else out there who wants spring to get here faster than I do.
Then came Thursday, where the weather was actually worse than the day before. Because Tracey was substituting in the Mansfield school district on this day, this meant we had to be up and out of the house a little bit earlier than usual. Not to mention the fact that I was planning on staying late at work to attend a parent support group at 5:00 PM and then the Board of Education meeting at 7 PM. I did not end up getting home until after 9:30 PM. All in all, a 12 hour plus day, this is unheard of for me. By the time I got into bed around 10:30 PM., I was feeling quite tired and exhausted but yet somehow, I was feeling a little bit better than I expected. That leads me to this morning. When I woke up I had a sharp pain in my left hip. This pain has been occurring more frequently and appears to be getting worse. It also has been affecting me in the middle of the night. I often get this pain when I sleep on my left side. If I sleep on my right side, then I will often get a severe pain in my right shoulder. Sleeping on my back, we'll often lead to pain in my lower back. Because of this, I will usually awake 3 to 5 times a night, because of the pain, to turn over, which in itself is no easy task (try doing this one might while keeping your arms still at your side). When I had gotten out of bed this morning, the pain in my left hip continued. To make matters worse, my right knee was giving me pain as well. (At this point, I'm sure you're thinking to yourself "what a mess." If so, you'd be correct.) Eventually, the pain in my hip and the pain in my knee had gone away like it always does.
Not exactly a great start to the day. Not really a big deal, since I was not planning on it being a banner day anyway. However, despite the recently cold and wet weather and the long Thursday, I actually felt pretty good today and probably had one of the more productive days at work that I've had in a while. But of course, by the time I got home I had a lot of difficulty getting out of my car and it was a real struggle to get into the house. Therefore, today was just par for the course as far as the last week or so have gone. Typically, I will have a good day, followed by a bad day or some other similar pattern. Usually, somewhat predictable. Instead, over the last week to two weeks, it seems that my mood, demeanor, stamina, and physical and mental strength have been fluctuating throughout the day. What that means, if anything, I have no idea. What has really seemed promising to me though is how relatively well I felt for most of yesterday and today. One day at a time, right?
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Dealing with things one day at time has never been my strong point and certainly does not come easy for me. I'm the type of person that hates surprises and would much rather know what's about to happen and when. That's why I get so pissed off when the weather forecast is wrong. I'm the type of person that likes a plan. You don't always have to stick to it, but you've got to have one. For me, it has always been necessary to try and anticipate the future, plan for the future. I didn't always stick to the plan, but I had one. Often, when people ask me how I'm doing I'll respond by saying like "you know, just taking things one day at time" but to tell you the truth, that's just something that I kind have been saying but don't really mean. It seems appropriate to say, but in actuality, I really don't know what to say. Some days, I'm worried about the future. Some days, I'm very worried about the future. Some days, I’m optimistic about the future. Rarely, have I focused on the here and now, but that is something I'm learning and really starting to enjoy. As I mentioned before, when I got home from work this afternoon I was completely exhausted. By the time Tracey was able to help me into the house I was just able to make it to my chair, lay back and shut my eyes. Within, what appeared to be seconds, first Sydney and then Emily, were on my lap asking me to read them books. My first thought, was to ask them to "please leave me alone for just a couple of minutes so I could rest" but I quickly realized how lucky I was to have two wonderful children so excited to have their father home. On a different day, I might have been thinking to myself about how I may not have the ability to read to them much longer, or worse, that in the future I may not be around to read to them. But today, without hesitation, I started reading to them. Today was a good day!
Site Update
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. The link to my "PatientslikeMe" page is still there, of course, if you want to keep tabs on my current condition. As always, please feel free to link this blog with a blog of your own, your Facebook page or twitter account. I encourage you to share this with anyone who may be interested. Awareness is just the first step towards treatment and a cure!
Monday, March 14, 2011
ALS TDI (ALS Therapy Development Institute) :: News - Article Details
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
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
Saturday, March 12, 2011
Post 18 - Falling off the Wagon
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 taste of beer. Not that I had abstained from beer completely during my experiment, but I did opt for the vodka or gin and tonic a number of times as an alternative. The second reason for stopping the trial at this time was due to the significantly fewer episodes of cramping I have experience in my legs and arms over the past several months. This I attribute to any one of three reasons. First, for whatever reason, maybe I'm just not getting the muscle cramps like I used to. That would be good. Second, since I have cut down considerably on my alcohol intake and have been eating somewhat healthier, perhaps this has played a role. Lastly, I am concerned that as my muscles continue to weaken and atrophy, that there really is nothing left to cramp up. I have asked this question before, during one of my clinic visits and was told that that was not the case; however, since I seem to receive contradictory information from visit to visit, I'll ask the question again when I go back to University of Pennsylvania hospital at the end of April. If this were the case, it would be very disheartening for me, since the majority of my cramping now takes place in my neck. If you've never had a cramp in your neck, then consider yourself very lucky. It makes the cramps that you get in your calves seem like a little pinch. I have had muscle cramping in my neck sporadically since my diagnosis. But now it has been occurring on an almost daily basis, sometimes occurring three or four times in a day. My fear is that my neck would follow the same path as my arms and legs. That is, cramping, followed by continuing weakness, until the muscle atrophies, and leaving me with little to no strength. I have certainly been experiencing an increased weakness in my neck over the past four months or so. When it is bad, my chin will rest on my chest, and it becomes a real struggle to lift my head. Even then, I can only keep my head up for about 5 to 10 seconds before my chin drops back down to my chest. Thankfully, this only seems to occur first thing in the morning, at night after a long active day, or at other times when I exert myself. It helps when I'm able to sit in a chair with my back supported. It is even better when I'm able to sit in a chair that also supports my neck.
Getting back to my first reason for halting the tonic trial, there is something about sitting outside and enjoying a good beer. Something that is very difficult to do in January and February. Last night, I actually had two beers with dinner. I am sad to say I was definitely feeling "it" before I was even halfway done with my second beer. Forget about drinking and driving, my concern was with drinking and walking, but I managed to survive the night. It really felt good to have a beer with dinner. I was also inspired by the opportunity to attend a grilled cheese and beer tasting at the World Café Live in Philadelphia. I have previously attended two others and the grilled cheese and beer pairings were outstanding. I also talked about this in the previous blog posting that I mentioned above. Typically, the cheese and beer tastings are limited to about 70 people and have sold out within days of going on sale, however, this time it appears as though they are preparing for a larger crowd. Tracey and I are planning on going to the Monday, April 18 tasting (typically a school night but this will be occurring during the week of my spring break) if anyone would like to join us. I can promise you that you will not be disappointed. Plus, you get to watch me drink beer through a straw.
Getting back to my first reason for halting the tonic trial, there is something about sitting outside and enjoying a good beer. Something that is very difficult to do in January and February. Last night, I actually had two beers with dinner. I am sad to say I was definitely feeling "it" before I was even halfway done with my second beer. Forget about drinking and driving, my concern was with drinking and walking, but I managed to survive the night. It really felt good to have a beer with dinner. I was also inspired by the opportunity to attend a grilled cheese and beer tasting at the World Café Live in Philadelphia. I have previously attended two others and the grilled cheese and beer pairings were outstanding. I also talked about this in the previous blog posting that I mentioned above. Typically, the cheese and beer tastings are limited to about 70 people and have sold out within days of going on sale, however, this time it appears as though they are preparing for a larger crowd. Tracey and I are planning on going to the Monday, April 18 tasting (typically a school night but this will be occurring during the week of my spring break) if anyone would like to join us. I can promise you that you will not be disappointed. Plus, you get to watch me drink beer through a straw.Wednesday, March 9, 2011
Post 17 - Back in the Pool
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 and I have never been able to give a clear-cut answer as to why I had stopped posting. To tell you the truth, I'm not really sure. They were definitely several factors, but since I am obviously blogging again, the reasons are now moot. I will attempt to provide an update and a quick synopsis of the last five months. Starting with the update, as my neurologist would tell you, I'm still breathing and still swallowing, so therefore, everything is great. I, of course, do not entirely share that point of view. I am now unable to lift either of my arms, although I still have some strength in my right arm. My left arm and hand are almost entirely unusable (remember, I am left-handed.). I am no longer able to hold a pen or use any cutlery with my left hand. I am able to use my right hand to hold a fork or spoon. But after two or three trips to the mouth, my arm fatigues, and I need to rest before continuing. Driving is another area that is proving to be continually difficult. Actually, driving is the least of the problem. The greatest difficulties that I face is getting in and out of the car, getting my seatbelt on and off, closing the door (I can't reach out with my left arm), getting the car in gear, and getting the key in and out of the ignition. Except for all of that, driving is a cinch. Actually, I do experience some difficulty backing out of parking spots, but really, that is all. The problem is, once I work my way through all of the difficulties, I am literally completely exhausted. Usually, I will sit in the car for several minutes just to catch my breath and to psych myself up to face the next endeavor. Also, with regard to my hand strength and fine motor skills, I can only use my right hand to type, and even that is somewhat difficult. Therefore, I am almost completely reliant on my speech to text software, so please continue to ignore any spelling or grammatical errors that you may come across. I do my best to proofread that I don't always catch all of the mistakes.
As you may have guessed, since I am still driving, I am still working. Just like anybody else, I experience my good days as well as my bad. I try and do as much for my office as possible since it has become quite difficult for me to get out and visit schools. This has been one of the toughest things for me to accept since I have questioned my own effectiveness as a supervisor because of my limitations. Additionally, being in the schools and visiting with teachers, and especially students, has always been my favorite part of the job and my escape, whenever I needed a break.
Since I have covered the breathing, swallowing, and the arms, I guess it's time for me to talk about the legs. Last month, I went for my wheelchair assessment, which is an evaluation to judge my suitability for a wheelchair. This was something that I knew was inevitably going to happen and yet somewhere deep down inside, believed that it would not happen. This assessment brought about two ironic and somewhat disappointing twist of fate. First, after ignoring the recommendations from almost all of the members of my care team (neurologist, social worker, occupational therapists, physical therapists, clinical nurse, psychiatric nurse) at the University of Pennsylvania hospital for the past year and a half regarding the use of a wheelchair, I finally caved in and decided to go. When I walked into the evaluation room, the therapist took one look at me, and with a scared look in his eye, declared that insurance would never approve me for a wheelchair. I'm thinking, if they are not going to approve me now, how in the hell were they going to approve me over 16 months ago. Needless to say, I had the evaluation done and I was recommended for a power wheelchair. At this point, we are now waiting for the insurance company to deny it is so my doctor can appeal their decision, which I am told is then approved 99% of the time. When I tried out the loner wheelchair as part of the evaluation, I was excited to see that it had a little horn. I thought to myself, "that may be fun" and thought immediately of George Costanza. Unfortunately, the representative from the wheelchair company, who was also present at the evaluation, informed me that insurance will not pay for the horn. As it turns out, the wheelchair is going to run around $40,000. Of course, the price is marked up considerably, because insurance will only pay for about half of the cost. My out of pocket co-pay is expected to be around $4000, with the wheelchair company eating the rest. But, as I said, the price is marked up to account for the limited insurance reimbursement, so really the only person with any out-of-pocket expense will be me. I can't begin to tell you how much I hate insurance companies. I'll save that for another blog.
In addition to the wheelchair evaluation, about two weeks ago we had someone out at the house to do a wheelchair ramp evaluation. There really is no point having a wheelchair, unless I can get in and out of the house. Luckily, the Philadelphia chapter ALS Association has been very helpful in facilitating the process and will even be covering the cost of the ramp. In case you were wondering where the money went, that we raised from the ALS walk, here it is. Thank you all once again, who donated, raised funds, and walked with me.
The last piece of this puzzle will be a modified vehicle that can accommodate a power wheelchair. Unfortunately, I have come to find out that insurance will not cover the cost of a vehicle, or the cost to modify our current vehicle. This may turn out to be upwards of $20,000 as well.
Getting back to my legs, it seems as though the weakness has progressed faster than I expected. Of course, it may only be my imagination. I could maybe walk 35 to 50 feet without my leg braces before I was to become too fatigued or lose my balance. Even with my leg braces, my walking is quite limited, and I still have significant balance issues. I can still go down steps, provided that there is a hand rail and/or I have some assistance. At most, I can probably go up two or three steps, but I would need someone to assist me. And this is all with my leg braces on. Overall, my balance is quite unsteady, and I have had numerous falls over the past several months, with the most recent ones occurring this past Tuesday morning and Monday evening. Luckily, they have not done much damage except for a few bumps and bruises.
The other great difficulty that I'm experiencing due to my leg weakness is the ability to get up from a seated position. Therefore, as Hanukkah/Christmas gift, we purchased a lift chair, which assists me in standing up. Otherwise, I need to be very selective in the type of chair I sit in if I plan on standing up under my own power.
Looking back over what I have written today, it seems a lot longer than what I had intended to write, therefore, I will spare you the synopsis of the past five months and save that for another day. Regardless of the doom and gloom I may have portrayed above, I am still feeling more optimistic on the whole that in some way, shape or form, I will beat this thing. For the most part, my family and friends have been terrific and it is because of their support and encouragement that I'm able to go on like I do. I can't even put into words how terrific Tracey has been in dealing with me and the entire situation. Even Sydney is beginning to rise to the occasion, which makes me so proud. You know, now that I think about it, I do have a lot to write about.
As you may have guessed, since I am still driving, I am still working. Just like anybody else, I experience my good days as well as my bad. I try and do as much for my office as possible since it has become quite difficult for me to get out and visit schools. This has been one of the toughest things for me to accept since I have questioned my own effectiveness as a supervisor because of my limitations. Additionally, being in the schools and visiting with teachers, and especially students, has always been my favorite part of the job and my escape, whenever I needed a break.
Since I have covered the breathing, swallowing, and the arms, I guess it's time for me to talk about the legs. Last month, I went for my wheelchair assessment, which is an evaluation to judge my suitability for a wheelchair. This was something that I knew was inevitably going to happen and yet somewhere deep down inside, believed that it would not happen. This assessment brought about two ironic and somewhat disappointing twist of fate. First, after ignoring the recommendations from almost all of the members of my care team (neurologist, social worker, occupational therapists, physical therapists, clinical nurse, psychiatric nurse) at the University of Pennsylvania hospital for the past year and a half regarding the use of a wheelchair, I finally caved in and decided to go. When I walked into the evaluation room, the therapist took one look at me, and with a scared look in his eye, declared that insurance would never approve me for a wheelchair. I'm thinking, if they are not going to approve me now, how in the hell were they going to approve me over 16 months ago. Needless to say, I had the evaluation done and I was recommended for a power wheelchair. At this point, we are now waiting for the insurance company to deny it is so my doctor can appeal their decision, which I am told is then approved 99% of the time. When I tried out the loner wheelchair as part of the evaluation, I was excited to see that it had a little horn. I thought to myself, "that may be fun" and thought immediately of George Costanza. Unfortunately, the representative from the wheelchair company, who was also present at the evaluation, informed me that insurance will not pay for the horn. As it turns out, the wheelchair is going to run around $40,000. Of course, the price is marked up considerably, because insurance will only pay for about half of the cost. My out of pocket co-pay is expected to be around $4000, with the wheelchair company eating the rest. But, as I said, the price is marked up to account for the limited insurance reimbursement, so really the only person with any out-of-pocket expense will be me. I can't begin to tell you how much I hate insurance companies. I'll save that for another blog.
In addition to the wheelchair evaluation, about two weeks ago we had someone out at the house to do a wheelchair ramp evaluation. There really is no point having a wheelchair, unless I can get in and out of the house. Luckily, the Philadelphia chapter ALS Association has been very helpful in facilitating the process and will even be covering the cost of the ramp. In case you were wondering where the money went, that we raised from the ALS walk, here it is. Thank you all once again, who donated, raised funds, and walked with me.
The last piece of this puzzle will be a modified vehicle that can accommodate a power wheelchair. Unfortunately, I have come to find out that insurance will not cover the cost of a vehicle, or the cost to modify our current vehicle. This may turn out to be upwards of $20,000 as well.
Getting back to my legs, it seems as though the weakness has progressed faster than I expected. Of course, it may only be my imagination. I could maybe walk 35 to 50 feet without my leg braces before I was to become too fatigued or lose my balance. Even with my leg braces, my walking is quite limited, and I still have significant balance issues. I can still go down steps, provided that there is a hand rail and/or I have some assistance. At most, I can probably go up two or three steps, but I would need someone to assist me. And this is all with my leg braces on. Overall, my balance is quite unsteady, and I have had numerous falls over the past several months, with the most recent ones occurring this past Tuesday morning and Monday evening. Luckily, they have not done much damage except for a few bumps and bruises.
The other great difficulty that I'm experiencing due to my leg weakness is the ability to get up from a seated position. Therefore, as Hanukkah/Christmas gift, we purchased a lift chair, which assists me in standing up. Otherwise, I need to be very selective in the type of chair I sit in if I plan on standing up under my own power.
Looking back over what I have written today, it seems a lot longer than what I had intended to write, therefore, I will spare you the synopsis of the past five months and save that for another day. Regardless of the doom and gloom I may have portrayed above, I am still feeling more optimistic on the whole that in some way, shape or form, I will beat this thing. For the most part, my family and friends have been terrific and it is because of their support and encouragement that I'm able to go on like I do. I can't even put into words how terrific Tracey has been in dealing with me and the entire situation. Even Sydney is beginning to rise to the occasion, which makes me so proud. You know, now that I think about it, I do have a lot to write about.
Thursday, October 28, 2010
Post 16 - "The New Phone Book Is Here, the New Phone Book Is Here!"
Last week was another tough week for me as I attempted to fight off a head cold that had affected Tracey and the girls a week prior. Actually, I think he did a pretty good job fighting it off as it sort of came and went over a 48-hour period. It was the type of cold where you just want to put your head down on the pillow and go to sleep. Not too much different from my every day. It did however make me that much weaker, which I did not think was possible. I experienced much more difficulty getting up out of chairs and walking. Although I did not have any falls, this was the most unsteady I have felt on my feet since my diagnosis. Obviously, my concern was that this was a sign of things to come. I am constantly saying to myself, and have since day one, that if this is the worst that it gets, then I can live with this. There have been some documented cases, although extremely rare, where progression suddenly stops. Although I am hopeful for the best, I feel that if the disease were to stop progressing, then that would be a happy medium, and one which I would gladly accept.
After visiting with the occupational and physical therapists, it was time to meet with the neurologist. This visit is beginning to seem a lot like the movie Groundhog Day. In fact, before she came into the room, I explained to the student nurses how my visit will typically end with an "everything is great-you’re breathing and swallowing. See you in three months" and although my neurologist didn't quite put it that way, I did get my obligatory thumbs up. We briefly discussed any potential clinical trials, of which she said there were two possibly starting sometime in the winter. Although I remain hopeful, the reality is that it will be very difficult for me to get into a clinical trial due to my onset and symptom date. For the most part, the majority of clinical trials for ALS patients exclude patients, whose official diagnosis date or symptom onset date, is greater than three years. For better or for worse, I initially reported my symptom onset date as May 2006. My first ALS diagnosis was in March 2007 with a secondary confirming diagnosis in November 2007. So, depending on how you want to look at, I'm officially somewhere between three and four years into this thing.
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| 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 currently only corporate sponsor, Tiki Hut Tans, to help subsidize the cost of the T-shirts. Secondly, I would like to thank my best friend Jeff for donating a photo shoot/family portrait, courtesy of Jeff Tisman photography (portraits of specialty), as an incentive to increase donations. Lastly, I would like to thank Mike Trunzo for designing the logo and working with the vendor to get it printed. We may not be the overall top fundraising team but we certainly will have the coolest T-shirts! Anybody who is still interested in donating to our walk team can do so through our team website by clicking on the following link: ALS Wing Fighters. Actually, now that I think about it, I think a few more "Thank You’s" are due. I want to thank my friend Becky, her husband Eric and their two children, Samara and Jacoby for walking and raising funds earlier this month out in Seattle, Washington. Becky raised over $600. In addition to Becky, I wanted to also thank everybody who has signed up to walk, and who have been assisting us by raising funds, as well, as everybody who has donated. As of today's date, we have raised slightly more than $8500! That is about $6000 more than I thought we would raise. Also, I want to thank Tracey who has spearheaded this effort, on top of everything else that she has going, and continues to amaze me every day with her support, strength and optimism.
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| ALS Wing Fighters - West Coast Style Seattle, Washington October, 2010 |
Last week was another tough week for me as I attempted to fight off a head cold that had affected Tracey and the girls a week prior. Actually, I think he did a pretty good job fighting it off as it sort of came and went over a 48-hour period. It was the type of cold where you just want to put your head down on the pillow and go to sleep. Not too much different from my every day. It did however make me that much weaker, which I did not think was possible. I experienced much more difficulty getting up out of chairs and walking. Although I did not have any falls, this was the most unsteady I have felt on my feet since my diagnosis. Obviously, my concern was that this was a sign of things to come. I am constantly saying to myself, and have since day one, that if this is the worst that it gets, then I can live with this. There have been some documented cases, although extremely rare, where progression suddenly stops. Although I am hopeful for the best, I feel that if the disease were to stop progressing, then that would be a happy medium, and one which I would gladly accept.
Two weeks ago, on October 14, I had my latest clinic visit at the University of Pennsylvania Hospital. As far as clinic visits go, this was one of the most un-eventful visits I have had since I started going over three years ago. My FSR score (Functional Rating Scale-see post #7 on July 29, 2010) is down to a 32, which signifies my largest drop (3 points) between visits. On the plus side, my FVC (Functional Vital Capacity, which I also talked about in post #7 on July 29, 2010) was up five points to 92%. Once again, in the opinion of the experts, I'm breathing and swallowing so everything is grand. In reality, it is becoming increasingly difficult to walk, even with wearing my leg braces. I can no longer go up and down steps without assistance, or at least using a hand rail, and even then, I can still only manage about four or five steps before I need to take a little break. As I stated in my last post, my left arm/hand is almost completely useless. There has been no improvement.
When I got to my visit this time they had asked me if I minded if a couple of nursing students could sit in during my visit. I was partly convinced that they did this on purpose, to ensure that I was on my best behavior and not my usual hostile, argument itself. There were a couple of moments during the visit that did manage to raise my blood pressure. First, was when I met with the occupational and physical therapists. We had our usual discussion/argument regarding conservation of energy, which ultimately led to our usual conversation over the use of a wheelchair. Although I am closer to the point of using a wheelchair then I would probably like to admit, I'm still not ready to take that next step (or seat), as it were. There have been times recently, where I have found myself browsing wheelchair websites so maybe I am a little closer to accepting it then even I am willing to admit.
Tuesday, October 12, 2010
Post 15 - I'm Back, Baby
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 beginning of the school year, a driving evaluation that was ordered by my neurologist, a quick trip to Boston, and of course a few falls. As I stated yesterday, the beginning of the school year did not bring the expected boost that I had hoped for. It has been an ongoing struggle to try and recapture my mojo. Of course, it was no help that on Friday, September 10, I had to go to the first part of a driving evaluation that was ordered by my neurologist. Because my arm and leg muscles have weekend, my neurologist ordered a driving evaluation back in July. I of course, experiencing a combination of fear and frustration, put off the evaluation for two months. During my last clinic visit in July my neurologist even went as far as to suggest that I was going to fail the evaluation. How is that for positive support? I immediately became angry at the thought of having to have this evaluation done. In all honesty, the biggest difficulty I have with driving is getting my key out of the ignition and occasionally getting my seatbelt on and off. It seems that once a week I hear a story of an older adult who has gone the wrong way down a one-way street, stepped on the gas instead of the brake, or blew through a stop sign. Every day I see people driving 10-15 mph under the speed limit and weaving in and out of lanes and making terms without using a single, but it is I who had to take a driving evaluation to determine if it was safe for me to be on the road. My anger only increased as I took the first portion of the driving evaluation, which consisted of a verbal test. I was subjected to questions like "what do you do when you come to a red light?" and "what do the flashing lights on a school bus mean?” Additionally, I had to draw lines connecting the numbers 1 to 13 in order and draw a picture of a clock with the numbers inside. Even the occupational therapist giving me the test had to continually apologize to me for the questions that she was forced to ask and admitted that she was giving me an abbreviated form of the evaluation. The scary thing though, was when the occupational therapist shared with me the results from other recent tests that she had given. Believe me, now, when I tell you that we should all be very afraid every time we get into a car because you would not believe the mindset of some people are out there on the road.
The second part of the test, the driving evaluation, which I returned the following Friday to complete, was almost just as stupid. Needless to say, I passed that portion as well. The only recommendation the occupational therapist is going to make was that I limit my driving to approximately 45 minutes to avoid fatigue in my arms. This recommendation was made based on the fact that after 45 minutes of "turn left.", "turn right.", "do K a turn", "make a circle to your left, make a circle to your right", so on and so forth, my arms began to tire. Just as they would for almost anyone who had to make continuous turns for 45 minutes. So what did I do about the therapist recommendations, you ask? Well, 10 days later I drove four hours straight to Springfield, Massachusetts where we spent the day at Six Flags New England. After spending four hours walking around the park (yes, I was able to do it), I drove another hour and a half to our hotel outside of Boston. After spending Monday walking around the Children's Museum of Boston and Tuesday morning seeing a Metabolic Specialist at the Children's Hospital of Boston for Sydney, I drove the full 5 1/2 hours back home from Boston. How was that for an F.U. to my neurologist and to the occupational therapist who made the recommendations? Of course, once we got home Tuesday night, my legs were so sore and fatigued that I ended up having a pretty bad fall walking to my front door, and that I needed to stay in bed for the next 36 hours since my legs were in severe pain and had almost no strength. Still, no regrets. After all, I was told not to drive because of my arms, not my legs.
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| Six Flags New England |
Besides the fall, that I just previously mentioned, when we got home from Boston, there were several others during the month. Actually, it has gotten to the point where I have had so many minor falls; it's getting hard to remember them all. The problem hasn't been so much the falls, but the fact that I am no longer able to get myself up off the floor once I do fall. And even though Tracey does have freakish like strength (her words), it is becoming increasingly difficult for her to lift 225 pounds of dead weight off the floor. Typically, I will need a piece of furniture to push up against, in addition to Tracey's assistance, to get up after a fall. I had one minor fall in Boston, where a kind of slid off the sofa in our hotel room, as I was trying to get up. Additionally, it was in Boston, where I experienced my first toilet bowl dilemma, as I mentioned yesterday. You know it's true love when someone is there to help you get up off the can. The fall after we got home from Boston was probably the most dramatic since the one where I got my head stuck underneath the bed. This time, I had just gotten into the front door. When I lost my balance and started to fall backwards. Unfortunately, the door had not closed behind me yet, and when backwards, I came flying back out the door like a cowboy in an old Western movie, where they get punched out and fall backwards out of the swinging saloon doors. As I was falling backwards, I managed to get a partial hold of the doorknob, which did nothing more than spin me sideways. It was at this point that I fell over backwards over a chair that we have on our front porch. My head came to rest on top of a small garbage can that we use to keep the dog poop. Very unpleasant indeed. The fall, coupled with the extreme fatigue in my legs, following our trip to Boston and the five hour car ride, made it impossible for me to get up, even with Tracey's assistance. Somehow, I managed to get up onto the chair that I fell over and after about 10 minutes, Tracey was finally able to help me stand up. From there, I went straight to bed for the next 36 hours.
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| Children's Museum of Boston |
The day before our trip to Boston, we held a bake sale at our local town festival, where we raised $365 for the ALS Wing Fighters. Although I did not do very much in the setting up or actual selling, I was there for the whole day, in the hot sun, to provide moral support. As I look back on this post, I guess I have a legitimate reason to be tired. We raised a lot of money in support of ALS, and I proved to myself, at least, I'm still capable of driving. Sydney and Emily had a great time at Six Flags New England. They loved going the children's Museum of Boston, they loved staying in the hotel, and most of all, they love sharing a room (Sydney said this was her favorite part). The second opinion that we received from the metabolic specialist was well worth the visit. Like I already said, no regrets.
Monday, October 11, 2010
Post 14 -I'm Still Here
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 feeling. It seems that getting up and going to work is getting more difficult each day. Somehow, though, I did manage to make it to work every day that I was supposed to, except for one. Not that I can say that I have been on time every morning but I am getting there, and days when I have to be on time, or even early, for meetings and such, I've been able to do it. It typically takes me now approximately 90 minutes or more to get ready in the morning and get out the door. For those early mornings, I will typically shower and/or shave at night before bed, since these two tasks are among the most difficult things I am still able to do, to cut down on my get ready time in the morning. Even then, it usually takes me about an hour; Tracey is now fully helping me to get dressed in the morning. I am still able to shave and shower independently, but with great difficulty, but after that, I need to rely on her help. Tracey can usually get me dressed in 5 to 10 minutes, but it is the showering and shaving part that can take up to one hour. That is because it is a totally exhausting process for me. One that requires me to take five or 10 minute breaks after each step. Showering alone can take me up to 10 or 15 minutes and leaves me more exhausted than any workout that I have ever done in my life. It will usually require me to lie down for at least 15 minutes to gather some of my strength and energy back.
Part of the reason that getting ready in the morning is taking so much time and causing so much fatigue is because I now have little to no strength in my left arm and hand, rendering it almost useless. Being left-handed, this has made things slightly harder for me. I can occasionally hold a pen to scribble some illegible letters that closely resemble my name and can no longer hold utensils with my left hand. Additionally, this has also unfortunately reduced the number of my sexual partners by 50%, down to one. Some things, like holding utensils or a toothbrush, I have now learned to do right-handed, but some things still remain a left-handed trait only.
Even though I do not notice the difference much with my walking per se, I do notice the difference with my stamina and balance, as well as my ability to navigate steps. This has led to several nervous moments as well as half a dozen minor falls over the past month. Although I still do not wear my leg braces around the house, I will always wear them outside of the home. I have also noticed a diminished strength in both my knees and upper legs. This has made it extremely difficult, and sometimes impossible, for me to get up from a seated position. I am now unable to sit in a chair, unless it has two arms, to assist me in getting up. And even then, depending on how low the chair is, I may still require some assistance to get up. Without going into too much detail, I have also discovered the hard way that I need to use the handicapped stall, when using the bathroom.
After reading this latest update, one may think that I am quickly losing hope and that my mood is continually bouncing back and forth between despair and depression. Though that may be true at times, for the most part, I would have to say that my mood appears to be in a state of flux. That is to say, that I'm truly not experiencing highs or lose but that my mood is kind of just "there". I'm not exactly sure how to explain it and perhaps that is why I have not blogged in over a month, but I kind of feel like I'm just going through the motions, although the motions are getting a little bit more difficult day by day. Perhaps it is because my routine has become so routine. Weekdays, I wake up, go to work, come home, take a nap, eat dinner, go on the computer, take a shower and then go to bed. The only real change to this routine is that if I get home from work late, I will take my nap after dinner. On weekends, I will sleep until between 10 AM and 11 AM (about 10 to 12 hours), get up, maybe have brunch, go on the computer or read the newspaper or maybe watch some TV, and then usually take a two hour nap in the afternoon and then repeat the same nightly weekday routine. I try and interact with the girls as much as I can but as they become more active, it becomes harder for me to do. It has literally come to the point where my 2 1/2-year-old daughter is now stronger than I am and on certain occasions, need to rely on my almost 5-year-old daughter for assistance. Talk about your humbling and humiliating situations.
In any case, I will continue to push on. This coming Thursday, October 14, I will be going to the University of Pennsylvania Hospital for my quarterly clinic visit. This is the one where they tell me how lucky I am and how great I am doing because I'm breathing and swallowing. Lucky for them that I can no longer lift my arms, because in the past I've come really close to wanting to punch somebody in the face. If the mood strikes me, I will attempt to post again a day or two after my visit to let you all know how it went.
Part of the reason that getting ready in the morning is taking so much time and causing so much fatigue is because I now have little to no strength in my left arm and hand, rendering it almost useless. Being left-handed, this has made things slightly harder for me. I can occasionally hold a pen to scribble some illegible letters that closely resemble my name and can no longer hold utensils with my left hand. Additionally, this has also unfortunately reduced the number of my sexual partners by 50%, down to one. Some things, like holding utensils or a toothbrush, I have now learned to do right-handed, but some things still remain a left-handed trait only.
Even though I do not notice the difference much with my walking per se, I do notice the difference with my stamina and balance, as well as my ability to navigate steps. This has led to several nervous moments as well as half a dozen minor falls over the past month. Although I still do not wear my leg braces around the house, I will always wear them outside of the home. I have also noticed a diminished strength in both my knees and upper legs. This has made it extremely difficult, and sometimes impossible, for me to get up from a seated position. I am now unable to sit in a chair, unless it has two arms, to assist me in getting up. And even then, depending on how low the chair is, I may still require some assistance to get up. Without going into too much detail, I have also discovered the hard way that I need to use the handicapped stall, when using the bathroom.
After reading this latest update, one may think that I am quickly losing hope and that my mood is continually bouncing back and forth between despair and depression. Though that may be true at times, for the most part, I would have to say that my mood appears to be in a state of flux. That is to say, that I'm truly not experiencing highs or lose but that my mood is kind of just "there". I'm not exactly sure how to explain it and perhaps that is why I have not blogged in over a month, but I kind of feel like I'm just going through the motions, although the motions are getting a little bit more difficult day by day. Perhaps it is because my routine has become so routine. Weekdays, I wake up, go to work, come home, take a nap, eat dinner, go on the computer, take a shower and then go to bed. The only real change to this routine is that if I get home from work late, I will take my nap after dinner. On weekends, I will sleep until between 10 AM and 11 AM (about 10 to 12 hours), get up, maybe have brunch, go on the computer or read the newspaper or maybe watch some TV, and then usually take a two hour nap in the afternoon and then repeat the same nightly weekday routine. I try and interact with the girls as much as I can but as they become more active, it becomes harder for me to do. It has literally come to the point where my 2 1/2-year-old daughter is now stronger than I am and on certain occasions, need to rely on my almost 5-year-old daughter for assistance. Talk about your humbling and humiliating situations.
In any case, I will continue to push on. This coming Thursday, October 14, I will be going to the University of Pennsylvania Hospital for my quarterly clinic visit. This is the one where they tell me how lucky I am and how great I am doing because I'm breathing and swallowing. Lucky for them that I can no longer lift my arms, because in the past I've come really close to wanting to punch somebody in the face. If the mood strikes me, I will attempt to post again a day or two after my visit to let you all know how it went.
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