About Me

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For those of you that don't know, I was diagnosed with ALS in March 2007. After two more opinions, the diagnosis was confirmed in the fall 2007 at age 39. This coming August (2010) I will have been married for seven years to an incredible wife, who has supported me throughout. During the course of our marriage we have been lucky to have two wonderful, amazing daughters. Sydney, will be 5 in November. Emily, will turn 2 1/2 in August. Currently, we reside in New Jersey with our Beagle, Trixie.

Thursday, October 28, 2010

Post 16 - "The New Phone Book Is Here, the New Phone Book Is Here!"

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.

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.

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.

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. 

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.

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.

Monday, September 6, 2010

Post 13 - Return of the Blogger

Forgive me Yoda, for I have waned. It has been 15 days since my last blog.
And so it goes...

Overall, the last two weeks have been quite difficult for me. This includes two falls, one near fainting spell and a trip to Great Adventure (Although tiring, that was a good thing). For me, summer vacation virtually ended on Monday, August 16. That is the day that the majority of my staff returned to work full time. Although I still had two more Fridays off, and one vacation day worked in, my workload has increased significantly since the 16th. Again, the refreshing bounce of rejuvenation I was hoping to receive after a reduced summer work schedule was absent. I was truly feeling to expect a little bit more energized and rested by the time school started up again, much like the hoped-for burst of energy I was hoping to experience following my vacation. Again, the feeling was just not there. My mood for the last two weeks has not been what I wanted it to be, and that in turn, makes me feel a little worse at times. This I admit has made it difficult to keep my spirits up over the past two weeks. In that time, I have begun to read two books. One on a cleansing diet and lifestyle, and one on meditation, in hopes that these will provide me some benefit.

The two falls were not even my low points during the week. That would have come after seeing my reflection while walking to my car. I know my gait is not a smooth one, and that time I stumble and teeter like a drunk that has had one too many, but when I finally saw myself, and what I looked like while I was walking, even I cannot believe how bad I looked. Twice within the past two weeks, once with my brother-in-law, and once with Tracey, after walking, they commented to me how difficult Walking appeared for me and how much I appeared to be struggling. The ironic thing is, both Instances they were referring to, I actually felt pretty good and thought I was walking rather well. There were other times I was with them that I felt like I was struggling, but it did not appear so to them. Once again it seems the great illogicality of ALS has struck again.

I think I am finally ready to admit that for the first time, I'm beginning to look as bad as I feel. It worries me that this may be the first sign that I am giving in. When will I know that enough is enough? When will I know that it's time to go on disability? When will I know that it is time start using a wheelchair? When and how will I know if what I've been doing, how I have been living my life up to this point since the time of my diagnosis, is the best long-term solution for me and my family. These are questions that I continually find myself asking, more and more frequently for which I do not have an answer. Actually, most of the time I can answer all those questions, however, each time I ask the questions the answers change. It is a great struggle for me not knowing what the future will bring, both immediate and long-term. I do not like surprises of any kind. I need to know what's coming, so I can prepare. I do know that getting up and going to work for the last three weeks has been very difficult. It's almost as if the difficulty has been increasing day by day, which is a total new scenario for me.

Let me take you back almost two weeks ago. (Insert your own Wayne's World dream sequence here)


The first of my falls occurred fortunately, with very little fanfare. I was out on the driveway about to get into my car. I was putting my briefcase in the backseat like I always do. I turned to open my car door and simply lost my balance, falling onto the driveway. Unfortunately, we have a gravel driveway, which has been stripped due to the snow plowing over the winter, and therefore, the driveway is as much dust and dirt as it is gravel. Because I had fallen down in between my car and Tracey's car, she could not see me from the house, and because of the way I had fallen, I could not get my cell phone out of my pocket. I had tried to get myself up, but after about 30 seconds I knew was not going to happen. Finally, I had the idea to set off my car alarm, shut it off, and set it off again. After the second time, Tracey, seeing my car still in the driveway, realized something was wrong, and came out to help me up. Since there appeared to be no signs of serious injury or damage, I simply dusted myself off, got my car and drove to work. The whole thing happened very matter-of-factly. Almost as if it was part of my daily morning routine.

The next fall was a little bit more dramatic. With my recent spate of falls I figured that the best odds would be on the dog for causing my next fall. I was partly right in that I can blame the dog indirectly for this fall. Trixie has this annoying habit of sitting on my feet when I eat dinner. Usually, I will pull my feet out from underneath her, in which case she gets up, moves to where I placed my feet and sits down again. This time, when I pulled my foot out from underneath her, my sock came off my foot a little bit. After dinner, when I was walking from my bathroom back into the bedroom, I stepped on my sock and thus tripped myself much in the same way you would trip yourself by stepping on your own shoelace. Again, I was holding my cell phone, which went flying (I don't know why my treatment team tells me to carry a cell phone in case I fall, since it seems to go flying every time I fall) This time, however, instead of going down like a tall oak tree and hitting face first, I was just barely able to get my hands out from underneath me and slightly cushioned the blow. My head kind of bounced when I hit the floor (almost the same spot where I broke my nose) and my head became lodged underneath the bed. Tracey, of course, hearing the sound of me bouncing off the floor, came running to our bedroom, with Sydney and Emily close behind. When Tracey found me, I was trying to dislodge my head from between the bottom of the bed frame and the floor. Not as funny as falling in the puke, but definitely something worth laughing at. Tracey had to move the bed over before she could help me out. The best part was about a half-hour later, Emily came back into the bedroom, where I was laying down, to ask me, while pointing underneath the bed, "Daddy, why your head under there?" This at least gave me another laugh. Thankfully, no broken bones but I did bruise my right hand and get a couple of bumps and bruises on the right side of my face. My right knee was also scraped up (hardwood floor burn) and my left foot kind of got caught underneath me as I was falling and was swollen and bruised for a couple days. Overall, no worse for wear, whatever that means.

In between my falls, I almost experienced my first feinting spell. I was holding my first staff meeting of the year last Monday. It was another one of those 97° days, with 95% humidity. Usually I will go right to my meeting in the morning without stopping at my office, but because I left something in my office, I had stopped there first. After leaving my office, I had stopped at the Wawa (a convenience store for those of you not local to the area) to buy some doughnuts and cookies for the meeting, because, yes, I am that great of a boss. Well, what should have been a five minute detour turned into a 20 minute side trip due to the difficulty I had getting out of my car, navigating the store, getting the doughnuts and cookies up to the cash register, paying for everything, and getting back to my car. This, after already stopping at my office and walking back and forth from my office, through the school, to my car. As I said, what should have been less than a five minute job literally became a grueling 20 minute workout. When I finally got into my car I was exhausted. I did not even have the strength to pull my seatbelt around me and secure it. This experience was more strenuous than any workout I have ever attempted. By the time I drove to my meeting, which was about two minutes from the store, I was sweating profusely and sucking wind. I pulled up in front of the building at 8:28 AM. My meeting was scheduled to start at 8:30 AM (again, I expected my doughnut run to only take about five minutes). One thing I hate is being late, especially for my own meeting. Thankfully, the first item on the agenda was to show a video from one of our summer programs. As the video started, I slipped into another room, fell into a chair, and Tried to catch my breath and cool down. Fortunately for me, what was scheduled to be a 15 minute video, turned out to be about 30 minutes long, thereby giving me some extra time to collect myself. My monthly meetings, which I try to hold to under 90 minutes, never go beyond two hours. However, my first meeting of the school year, which this meeting was, typically goes a little longer. It was a little before 9:30 AM when I started and a little before noon when I ended. After the meeting, which is customary, I will usually discuss individual issues with staff members. This day was no exception. It was about 1:15 PM when I got back to my office. Although I stayed until about 3:30 PM my day was done when I left the meeting. By the time I got home on Monday I had a little headache. I sat down in my comfy chair and ended up taking a two-hour nap. Throughout the night Monday, my headache continued to get worse, and when I woke up Tuesday morning, in addition to the headache, my stomach was bothering me as well. I thought it was best I did not go to work on Tuesday, which course caused a guilt trip for me since I absolutely despise taking sick days. In addition to my guilt for calling out sick, I began to question my future as far as employment goes, with a special emphasis on all those questions, I stated above. Again, I began to wonder if pushing myself to continue to work is in my best interest.

Needless to say, my mood over the past week has definitely been more down than up. I have also begun to realize that simple, mundane tasks and routines are either impossible for me, or else require so much of my strength and concentration that I am exhausted after completing the simplest task. My only hope at this point is that by returning back to work full-time and getting into a consistent routine will help to stabilize my mood and re-energize myself. This is my Bizarro Theory, if I may use another Seinfeld reference here. The Bizarro Theory states that up is down, black is white and night is day. In my world it seems that rest makes me weaker and activity makes me stronger (how bizarre, get it?), even though I am told that in order to combat the disease I should be resting instead of working. Only time will tell.

Sunday, August 22, 2010

Post 12 - ALS In One Word

I have been a little lackadaisical as of late with updating the blog.  It has not been for a lack of things to say, but instead, the things that I want to say.  I have to admit that the last couple of postings have been a little bit more forced on my part and I have begun to take more notice of what I am saying and how I am saying it.  My last entry is an obvious example of this.  In both my daily life, and in writing this blog, I struggle with the realities of what going through and what I am feeling in competition with trying to maintain a positive attitude. I feel that with my last couple of posts I have gotten away from my original intent, which was to write as an outlet for myself and provide information, and instead have written for an audience.

I know now for some people, my words have been upsetting. But this is the reality of what I, my family, and others with ALS, are going through.  If you happen to browse through the forum on the Patients like Me website, you will see that most people with ALS who comment are trying to face the reality with dignity, humor and realism.  In that respect, I am no different.  So before going any further, I will now provide my disclaimer: Just because my words may be upsetting, the tone of my writing may be a little negative or my mood seems a little down, do not think I have given up the fight. As most of you know, I am as easy-going as they come, but when I want things my way, I can become the most stubborn S.O.B. on the face of the earth.

The last two weeks have been somewhat interesting for me. First, no doubt many of you have heard the new information regarding a possible correlation between head injuries and ALS.  Some people have even gone so far as to question whether Lou Gehrig even had ALS, or simply some other disease related to repetitive head injuries.  Regardless, what this information means for me and others with ALS is irrelevant.  Personally, I do not believe significant and/or repetitive head injuries are a precursor to ALS.  I do have several other theories that I probably will get into some other time. To me, the biggest benefit of this information was that, for a day or two at least, ALS grabbed the headlines and was talked about on the news.  I'm sure you have all heard the saying, "there is no such thing as bad press."

One thing that has begun to concern me is my future independence inside, but also outside the house.  It has gotten to the point where I am reluctant to do anything outside of the house, unless Tracey is with me. This first became apparent the week we spent down at the shore. Although we were in a place where we stayed many times before, this was virtually a new experience for me and for Tracey.  From getting into the house, maneuvering throughout the house, sitting in chairs and on couches, and eating at the table, all required new adjustments and several days for me to get used to. Likewise, when going out for something as simple as dinner or the beach, we now had to take into account the type of chair, the surrounding environment, types of food and drink, since I am having considerable difficulty using utensils and find it difficult to lift a glass to my mouth.  I even went as far as to drink my beer with a straw the other day.  More and more, I need to rely on Tracey for assistance in accomplishing any and all of these tasks.  She has us a wonderful understanding of my limits and abilities and has gotten to the point where she can almost anticipate the amount of assistance I will need and when I will need it.  Primarily for this reason I am hesitant to leave the house without her.

Earlier this month I had plans to go to a Mets game with some friends. (I know they suck, but I've been a fan for almost 40 years and there's not much I can do about it now) I had suggested the idea of a game and even pickd the date back in July.  After experiencing the troubles I had at the shore (see Post 10 - "Vacation, all I ever wanted...") I started to give the game a second thought.  I was afraid of how far I would have to walk from the train to our seats.  I was concerned about having to walk up or down steps to get to our seats.  I was concerned about getting up-and-down from my seat.  I was concerned about being able to drive home from the train after working a full day and then going into the city for a baseball game at night.  I was also concerned with where would we eat, what would we eat, and would I even be able to eat?  These were just some of the things I need to now concern myself with.  Things that I did not consider when I first suggested the idea to my friends and certainly things I never had to consider in the past.

Nearly 3 1/2 years after my initial diagnosis, it still frustrates the hell out of me that no one can tell me why I have ALS, what causes ALS, how do you diagnose ALS, and most importantly, how can you treat and/or cure ALS.  It has been almost 130 years since the symptoms of ALS were first described and approximately 70 years since Lou Gehrig passed from this disease (supposedly), and yet all those questions still remain.

If I were asked to sum up this disease in one word, that word would be... Frustrating. I have previously talked about how physically taxing this disease can be, but what often goes unnoticed, or at least underestimated is the emotional and mental strain.

On another note, over the past couple of weeks I have had a couple of more falls, but thankfully, no major injuries. I will refrain from going into detail, since I have decided to comprise a list of my top 10 falls. Look for that blog post shortly.

Also, we are only 75 days away from the ALS walk in Philadelphia, so, if you have not already done so, please consider joining the ALS Wing Fighters in raising money on behalf of our team for this important cause. If you are unable to walk on November 6, you still have the option of joining our team as a "virtual walker" to raise funds and walk with us in spirit. Otherwise, we would appreciate any donations, no matter how small. It all adds up in the end. You can access our team page by clicking on the ALS Wing Fighters. Thanks again for your everlasting support!

Monday, August 16, 2010

Post 11 - Taking the Good with the Bad

In an attempt to give everyone some insight to what I and my family are going through I had the idea, with the encouragement of some family and friends, to start this blog.  Over the past five weeks I have attempted to be honest and forthright in what I was feeling and experiencing.  Although life with ALS is quite challenging and at times downright disheartening, I am afraid that my blog may have given some people the wrong impression. There are many benefits to being diagnosed with ALS. Some I will share with you now. In no particular order:
  • Medical Marijuana                    
               FAQs on N.J. Legislature-approved bill that would legalize medical marijuana

              Amyotrophic lateral sclerosis: delayed disease progression in mice by treatment with a cannabinoid.

Although I must confess, and this is the absolute truth, I have never experimented with marijuana.  In fact, I have never even had a drag from a cigarette.  (I do admit, however, that I may have tried that beer thing a couple times or so).  As you can imagine, I have done a lot of research on ALS and treatment methods, and in all honesty, I have found a lot of research demonstrating possible positive benefits of marijuana and neuromuscular diseases.  Once the law in New Jersey takes effect, this will be a course of treatment I will give some serious consideration to.
  • I have not changed a diaper in over two years
I have not had the strength to lift my daughters onto a changing table nor do I possess the manual dexterity to change a diaper.  A benefit for me, but certainly not for Tracey.
  • Guaranteed, preferred parking almost everywhere I go
You've got to love that handicap tag!  Actually, I had the tag for about four months before I actually used it and even then it was only in bad weather.  Now, unfortunately, I use it almost all of the time.
  • I am encouraged to drink red wine 
             Lyophilized red wine administration prolongs survival in an animal model of amyotrophic lateral sclerosis

If the vodka and gin and tonic trials fail, I can always move on to read wine. I am sure Tracey would appreciate another trip back to Napa Valley.
  •  I am never asked, nor expected, to clear my plates from the table or to fill or empty the dishwasher 
It's all I can do to get myself up from the table, let alone carry some dishes or glasses. The only way I can carry a plate is by using both hands, and with my arms fully extended down to my waist. I am unable to lift a plate or a glass higher than chest level.  At the rate it would take me to clear the table or fill the dishwasher after dinner, Tracey would be serving breakfast.  Another benefit for me, but again, not necessarily for Tracey. 
  •  Sleeping 10 or more hours a day is considered normal and encouraged by my doctor 
It is not uncommon for myself or others with ALS to sleep at 10 or more hours a day. On some weekends, where I have been very active over the course of the previous week, I have slept for 12 to 14 hours a day. Typically, on a Monday morning, when someone asks what I did over the weekend, I will respond "sleep". Often, I am not joking.
  • My doctor's suggested course of treatment is to sit on the couch, eat potato chips, and watch TV
              High Polyunsaturated Fat And Vitamin E Intake May Halve Motor Neurone Disease Risk

 My treatment team at University of Pennsylvania Hospital is consistently telling me I need to take it easy, rest and not exert myself. I hear this recommendation in one form or fashion during every visit.  My typical response is that I am not going to sit on the couch and eat potato chips and watch TV. Inevitably, whether it be the neurologist, the occupational therapist, the physical therapist, clinical nurse, social worker, the psychiatric nurse or any other flunky they may have poking and prodding me on that day, they will tell me that that is exactly what I should be doing. Not gonna happen!  I have increased my intake of milk shakes and Oreo cookies, and I do take vitamin E and omega-3 on a daily basis, just in case there is something to that high fat, high cholesterol thing.
  •  Nobody questions or complains when I take forever in the bathroom
Actually, I would like to blame this one on the ALS but the bathroom has always been my favorite room in the house (sorry if that's a little too much information). Nowadays, it does take me a bit longer than usual to get myself together, after using the bathroom. Sometimes, depending on my level of fatigue, just washing my hands can be a chore and brushing my teeth can be a prolonged process.  I can even begin to describe the difficulties I have with showering since I have limited use of my left arm and I can no longer lift either of my hands above my shoulders.

  •  I, and my family, are able to walk right on, or get immediate preferred seating, to any ride or show at theme parks, such as Disney World. (I am making myself available for rental for anyone who would like to take me on their trip) 
I have to admit, the ALS was worth its weight in gold when the family went to Disney World last winter. We didn't miss a ride or a show. The longest we had to wait for anything was about 10 minutes. The highlight for my daughters and for me, was when we bypassed the one hour wait at Ariel's Grotto and walked right up to meet her before it even opened up. (Sydney's favorite is Ariel and if you ask her what she wants to be when she grows up, she would tell you a mermaid.  Notice in the picture below that she has her little mermaid jacket and shirt on)  We were in there for about five minutes taking pictures and getting autographs, while Ariel talked with both Sydney and Emily and gave them (sadly, not me) plenty of hugs and kisses. To see the looks on their faces ALMOST made it worth it to have ALS. It is a moment, I will never forget!

Thursday, August 12, 2010

Post 10 - "Vacation, all I ever wanted... Vacation, had to get away" or so I thought

One of the most difficult things to deal with, while battling ALS is the incredible mind-fuck (Sorry, I never promised you a PG rated blog) it can cause from time to time.  Early on in the diagnosis, it always seemed to me that the more active I was, the more strength I had and the better both physically and mentally I felt. At the time it seemed to make sense. I was still fully functional with just some diminished strength and some modest fatigue. During those early days, I was still doing yard work and other work around the house. The work was a bit more difficult for me to do, but I was able to do it. Usually, I paid a moderate to heavy price the next day. The following morning after doing work I would usually have just enough energy to get myself out of bed and onto the couch.  Emotionally, I would often feel good that I was able to accomplish some work the day before, but physically I would often feel like crap. For this reason, my clinic team (that's what they call themselves, I guess it makes them feel important) has consistently told me since early on in the diagnosis that I need to limit my physical activity and conserve my energy and strength. This, of course, has been a continuing point of contention between me and my clinic team.

Even though I am now able to do far less than I was able to do even a year ago, I still seem to increase my strength and energy with the more that I do. The hard part for me has always been, and continues to be, getting going in the morning. Getting me to start my day is like trying to start an old Chevy Nova on a cold winter morning. Almost impossible to get going, and when you finally get it started, it takes forever to get out of first gear. Some two years later, as my functioning level has significantly decreased, this phenomenon has continued. What has become almost a common occurrence for me every morning has been a conversation with me where I continue to tell myself to just get up and get going. I keep reminding myself that I will feel better and stronger as the day goes on.  Although I know this to be true, on most mornings, I cannot find the strength or energy to get myself out of bed.  For comparison purposes, imagine yourself trying to get up every morning with the worst case of flu you ever had, without the fever. If you can just imagine the aches and pains, the soreness, the fogginess and cloudiness in your head and then multiply the fatigue by about 10 you'll have some idea. Many is the morning, where I have managed to get my feet over the side of the bed to sit up, just to fall back down in the other direction, with my head now at the foot of the bed, because I was too tired to sit up, let alone stand up. Additionally, it has always seemed to me that when I get six hours or less of sleep a night, I am more alert and have a better ability to function in the morning. Unfortunately, on those days, I am usually done for the day by two or three o'clock and end up taking a 90 minute or so nap just prior to, or following dinner.

Last week, I had hoped things would have been slightly different. Tracey, I and the girls, spend a week at my in-laws shore house down at LBI (for anyone not from New Jersey the translation is a beach house on Long Beach Island). The initial thought and hope was that I would go to bed early, sleep late, do little next to nothing, and would therefore become relaxed, refreshed, and rejuvenated. I had already chronicled my adventures on the trip down to the shore (Post 8 -George, …I Mean Darin is Getting Upset, posted on July 30) so I will not go into detail regarding the preceding events, however, I will pick up from that point. That Friday, I did exactly as I expected to do, which was nothing. I went from bed, to chair, to couch, back to bed, back to chair, so on and so forth, until back to bed for good. It was great! The plan for Saturday's was to go to the beach for a little while and then Tracey and I were going to go out for dinner to celebrate our wedding anniversary and to see a friend's band that was playing on LBI that night.  Unfortunately, I had almost no strength or energy on Saturday. With Tracey's assistance, I was able to get dressed for the beach and get out the door. Throughout the day I was barely able to lift my arms, or move my legs. Attempting to walk on the sand was a whole another adventure that I will chronicle at a later time. We ended up canceling our plans for Saturday evening because by the time we got back from the beach, I had no energy.
Storybook Land

As the week went on, it seemed the less I did, the less I was able to do, and the more tired I would become. I was a little surprised by how I felt because for the first time I was completely resting my body as opposed to just taking it easy. I truly expected the opposite, and that was to have more strength and energy. Finally, by Tuesday I had had enough. Prior to going to the shore, Tracey and I talked of bringing the girls to Storybook Land, an amusement park about 20 minutes outside of Atlantic City. It took every ounce of strength, energy, and motivation to get myself out of the house, but I wanted to do something fun with my family. By the time we got to the park and I started to walk around, I could feel my strength and energy increasing. Although I did start to get tired by the end of the day (about three hours) this was still the best that I had felt so far on our vacation. Needless to say, on Wednesday I was almost totally incapacitated and had a carbon copy day of the previous Friday.
Fantasy Island on LBI

On Thursday, I was up for more action and raring to go. I played with the girls on Thursday morning, and in the afternoon we went to another amusement park on LBI. Once again, I felt great throughout the day and continued to feel better as the day went on. Reading this, one may think this was great, which it was at the time, however, by the time Tracey and I had dinner that night (a semi-romantic dinner on the deck by ourselves after putting the girls to bed) I couldn't even hold my utensils and needed Tracey's assistance to finish my meal.

Okay, now I'm finally ready to make my points regarding one of the most frustrating aspects of this disease for me. First, it appears as though I have two choices. I can continue to move along at half speed, and that way, hopefully have something left in the tank for the next day or I can go full speed and take a day or two to recuperate. It is clear to me that it is not an option to just sit around for days and try to save or store up energy as it appears my clinic team would like me to do. I do not see any physical or emotional benefit to this philosophy. For me, it appears as though it simply does not work that way. Regardless of which option I choose, I still have to face the daunting task of getting up in the morning, going through a daily routine, and getting dressed. This is no small task for me. Based on past experience, the best case scenario would be to sleep for about five or six hours, get up and go full tilt. However, that is not a good choice for even a healthy person, let alone me. Therefore, it would make no sense for me to do that, but yet, that would be a day when I would be at my best. Unfortunately, it would catch up with me about 12 hours later and knock me on my ass for the next two days. What to do, what to do, what to do? Either way, I am left to sit, wonder, contemplate, analyze, re-analyze, over-analyze (this is what I do best) what is the best way to fight this fight, for me and my family. The fact that there is no answer frustrates me beyond belief. After all, the tortoise has already taught us that slow and steady wins the race, but yet, for some reason, to me, that seems like giving in.

On another note, I did have a few vodka tonics while at the shore with no adverse effects. Additionally, I had a couple of gin and tonics last night and the cramping was definitely more pronounced. Obviously not a big enough sample size to draw any conclusions.  The great experiment continues...

Also, our recruiting continues for the ALS wing fighters. To date, we have over 20 people signed up to walk and have raised over $1800. We are currently the eighth highest fundraiser, out of approximately 50 walking teams scheduled to walk this coming November. Our goal is $5000. So we still have a ways to go. Thank you again to everyone who has already signed up to walk and/or made a donation. Remember to keep hitting up, your family members, friends, coworkers and neighbors to support you in walking. Your participation and support is greatly appreciated.  If you are interested in learning more about our walking team, would like to sign up to walk and/or make a donation, please check out the ALS Wing Fighters link to your right.

Monday, August 2, 2010

Post 9 - Anniversary Song

In my post on July 18, I talked a little bit about my distaste for celebrations. A better way to clarify myself would be to say that I am not big into celebrating holidays, but instead, feel it is important to celebrate milestones. I am not a religious person, so religious holidays have very little importance to me. Valentine's Day is just a Hallmark holiday, with little true meaning. Independence Day was really meant to be celebrated on July 2nd, not on July 4th, and don't even get me started on Columbus Day. It is common knowledge that Columbus did not discover America so what are we celebrating?  Today is another important milestone for me.  Actually, it is an important milestone for both Tracey and me.  Today is our seventh wedding anniversary.  Seven years ago today, in front of approximately 100 family members and friends, Tracey and I were married at the Smithville Inn, in Smithville New Jersey.  Our song was the Anniversary Song by the Cowboy Junkies.  (click on the link to hear the song.  The lyrics are beneath our picture, if you're interested)
Anniversary Song

Have you ever seen a sight as beautiful
as that of the rain-soaked purple
of the white birch in spring?
Have you ever felt more fresh or wonderfu
than on a warm fall night under a Mackerel sky,
the smell of grapes on the wind?
Well I have known all these things
and the joys that they can bring
And I'll share them all for a cup of coffee
and to wear your ring

Have you ever had the pleasure of watching
a quiet winter's snow slowly gathering
like simple moments adding up?
Have you ever satisfied a gut feeling to follow
a dry dirt road that's beckoning you
to the heart of a shimmering summer's day?
Well I have known all these things
and the joys that they can bring
And I'll share them all for a cup of coffee
and to wear your ring

And I don't know how I survived those days
before I held your hand
Well I never thought that I would be the one
to admit that the moon and the sun shine
so much more brighter when
seen through two pairs of eyes
than when seen through just one.
Have you ever seen a sight as beautiful
as a face in a crowd of people
that lights up just for you?
Have you ever felt more fresh or wonderful
as when you wake by the side of that boy or girl
who has pledged their love to you?
Well I have known all these things
and the joys that they can bring
And now every morning there's a cup of coffee
and I wear your ring.

The story that I am about to tell you now is a true story that I've never told anyone before, not even Tracey.  In January of 2002 I had surgery on my sinuses.  Following the surgery I had experienced complications and twice had to go to the emergency room due to excessive nosebleeds.  On one occasion, I had lost so much blood, that I needed to spend the night in the hospital.  I had returned to my doctor's office during my third nosebleed since it was very close to where I was working at the time.  After he was unsuccessful in getting the bleeding to stop he sent me directly to the hospital for emergency surgery, which finally did the trick.  All in all, from the time of my first surgery to the emergency surgery, for a period of about one month, Tracey stood by my side and took care of me.  She cooked, she cleaned, and she nursed me back to health.  She did everything she could to see that I was comfortable and taken care of.  It was during this point in time (hold on for an ironic twist of fate) that I realized that if anything should ever happened to me this was somebody that was going to stay with me and take care of me, unconditionally.  Finally, I was smart enough to know that I could not risk losing someone like that.  We were engaged five months later.

I had planned to get engaged in Mystic, Connecticut, following a six-day camping trip to Provincetown, Massachusetts.  This trip already had special significance for Tracey since I had already gone to Provincetown several times with other lady friends and she was the first to ever accompany me a second time.  The fact that I was able to get her to go with me a second time should have been reason enough for me to propose.  If at that time Tracey did not know what a jerk she was about to marry, she was soon going to find out.  Within 10 minutes of being engaged I had joked with Tracey that since I had just proven how faithfully committed I was to her for the rest of my life, that I should now be allowed to date.  She replied with a simple "no ".  Since Tracey and I had known each other for approximately 6 years and had dated for three of those years, she was no stranger to my odd, ill-timed, sometimes dark, self-deprecating, sense of humor.  Now I think, that at the time, she was just realizing that there was no moment sacred enough for me not to make a joke.

Some other previously embarrassing moments for others prevents me from talking about several other times I had made ill-timed, and/or inappropriate jokes.  For me, that has always been the preferred way of lightening the mood for an uncomfortable situation.  Additionally, I've never had a problem making a joke at my expense. 

For those of you that do not know how great Tracey is for actually putting up me, I am about to tell you.  It's hard enough for someone to go through what she is currently going through without having some jerk make jokes all the time, but unfortunately that's who I am.  Take for instance, the time were watching TV and a commercial came on for one of those Internet dating services, who was offering a free weekend.  Nonchalantly, I turned to Tracey and suggested that we should sign her up.  When she looked at me puzzled and asked why, I stated that I thought it was only right that I should have a say about my children's next father.  It took Tracey all of about 5 seconds to fully comprehend what I just said, before she burst out in tears.  In my effort to cheer her up, I reminded her about the free weekend the Internet dating service was offering and how it was not going to cost us anything.  Yeah, I know, I'm a jerk.  There was also the time that we had gone to a funeral home for a viewing.  After standing there for about five minutes I commented  to Tracey about how I thought the funeral home was a very nice and tasteful place.  She agreed.  I then asked her if we should pick up some brochures so she would not have to wait until the last minute.  Yeah, I know, I'm a jerk.  I remember watching the news with Tracey around the time of Michael Jackson's funeral and all of the hoopla surrounding it.  After hearing about all the celebrities and people from around the world who are attending the funeral I suggested to Tracey that I wanted to make a guest list for my funeral because, after all, I didn't want "just anybody coming to my funeral, especially if they're just using it as an excuse to get out of work."  By this time, Tracey learned to just ignore me.  However, there was one more time that I did upset her.  Several months ago, we were doing our spring cleaning, and I wanted to clean out my closet.  I had decided to get rid of all but one or two of my button-down shirts, since it had been well over a year and a half since I was able to button them, and get rid of all my ties, since it had been two years since I had been able to tie a tie.  Tracey, for ever remaining the ultimate optimist, voiced her objections under the opinion that they were perfectly good shirts and ties, and that someday soon, I would be able to wear them again.  As she left the room she told me that she did not want me to get rid of all my ties.  My response - "I'm not getting rid of all my ties, I'm keeping one for the funeral".  Almost instantaneously I heard the crying.  My attempt at consoling her - "you know I'm only joking... I want to be cremated".  Yes I know, I'm a big jerk!  Even now, when I read back over all that I just wrote, I can't help but laugh.  Yes I know, I'm a really big jerk! 

These are just some of the examples of the ways I have nearly driven Tracey crazy over the past several years.  Tracey definitely deserves better, I agree.  I told her this before we started dating, before we got engaged, before we got married and I continue to tell her this almost everyday. Thankfully, she has refused, and continues to refuse, to pay attention to me and has learned to listen to me when it counts, like now.  HAPPY ANNIVERSARY, Tracey!  I Love You, Always.

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!