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.

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.

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.