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.

Sunday, October 16, 2011

Post 33 - The Collected Unfinished Works of D. Miller

Although I have not updated the blog in a while, it has not been for want of topic. There have been some random thoughts here and there that I felt like talking about, but I just never seemed to get around completing my thoughts. This has been due in part to time constraints. Not that I'm a busy man, but my time is still scarce. I'm usually getting home from work around 4:45 PM and we typically eat dinner between 5:30 PM and 6 PM. This allows me to shut my eyes for a good half-hour, and the rest. After dinner, I'm usually exhausted, and will spend whatever energy I have reading to the girls or watching them play. as of late, I have been finding myself in bed by 8 PM. When I have had the time to blog, the effort of getting the computer, starting the voice to text software and writing, editing and posting to the blog feels like it takes more energy than I have. Over the past weekend, however, I have found the time and energy to put together a compilation of blogs from the past month that I started, but never posted. Enjoy.


The Beginning

School officially began on September 7. Up until this point, I had not worked more than three days in a week, let alone three days in a row, going back to June. During the summer, the district is closed on Fridays, and I typically took a vacation day, one day a week. May is probably the last time I worked three days, since I would usually work from home on Wednesdays to break up the week. I ended up working three straight days the first week of school. A minor accomplishment in itself. The following week, I worked from home on Wednesday, meaning I made it to work four out of five days. Again, another minor accomplishment. I was actually thinking about going for a full five days, when I came down with some sort of stomach virus that sidelined me for a couple of days. In actuality, under different circumstances, I probably would've been able to plow my way through but now, a small headache and a slightly upset stomach, puts me in bed for two days. I did not have enough strength to stand and when I did, I did not have the balance to hold myself up. This past week, I worked Monday through Wednesday and work from home on Thursday. If I really wanted to, I probably could have pushed myself and gone into my office on Thursday, but common sense got the better of me. So instead, I'll settle for another four out of five work week. Since last June, my disease has not progressed that much further, but yet, most things have seemed to have gotten a lot more difficult.

The Trip

During the third week of September, I only went into my office on Monday and Tuesday, because on Wednesday we left for Massachusetts to have Sydney seen by a specialist at Children's Hospital in Boston for her Galactosemia. This was a trip I was looking forward to with a lot of anxiety. Not for Sydney, because I was relatively confident that the doctor would tell us that she was doing great, which he did. The issue for me was the drive. If you recall my blog from approximately one year ago, it was the same time of year in which I had my driving evaluation because my neurologist thought that I should not be driving anymore. The results of my driving evaluation indicated that I should limit my driving to approximately 45 minute's. As my official F. U. to the driving evaluation results and the thoughts and opinions of my clinical team, I drove the full 5 1/2 hours back and forth to Boston. This year, it was not to be. Tracey had to handle the full load. Driving has always been my thing and something that I have enjoyed. In the past, I've driven straight through from New Jersey to Florida, as well as from New Jersey to Northern Maine. Tracey had never driven more than 2 1/2 hours continually. To make matters more difficult, last year, as I drove, Tracey was able to provide snacks for the girls, assist with entertainment and dole out discipline when needed. All tasks that I was unable to do. This necessitated several stops along the way that only contributed to a longer drive. On the way home from Boston, rush-hour traffic, and bad weather contributed to turning a five hour trip into a 7 1/2 hour trip. All in all, Tracey did a wonderful job getting us to and from. For me, however, the trip was a reminder of just how much more my disease has progressed from last year.

The Death

Steve Jobs: February 24, 1955 – October 5, 2011

Like everyone else, I was a little taken back by the sudden announcement of Steve Jobs death on October 5. Death has become a very poignant topic for me. After the first year of my diagnosis, for some unexplainable reason, I became infatuated with reading the obituaries. Not every obituary. I used to scan the obituary page for death notices of people in my age bracket. This gave me a sort of sense of comfort to know that there were other people, around my age with children and families that were passing away. I think the comfort lied in the fact that there were other people and families going through what I and Tracey and the girls were going through. It also made me realize, that in some circumstances, some people didn't have the luxury of preparing for their end and therefore, never learned to cherish their time with family and friends, the way that I have now. I am happy to say that I no longer participate in this somewhat ghoulish practice. Perhaps it is because it has been some years since I have been able to read the newspaper, but I think it was more so because I am able to finally accept and come to terms with my reality. I believe that it helped me to see that death is inevitable for everyone, and that life is what you make of it. I know it sounds cliché, but it is true. Over the past couple years; I have not been as consumed by death as I had been during the first couple years of my diagnosis. Following the death of Steve Jobs several weeks ago, I had read several articles online about his life. As most of you know, Steve Jobs suffered from pancreatic cancer, which ultimately cost him his life. What I did not know, was that we both had several things in common besides being diagnosed with a fatal disease. When it comes to diet, Steve Jobs did not eat any type of meat, except for fish. Although not as strict as him, even prior to my diagnosis, I had virtually eliminated all red meat from my diet and would only eat fish or poultry. Steve Jobs was also a Zen Buddhists. Again, I have not gone that far, but even prior to my diagnosis, I had practiced such things as meditation and self hypnosis as ways to improve my inner peace. This has become extremely important, since one of the theories as to a cause of ALS is stress and anxiety acting as a precipitating factor. To this day, my favorite book remains the Tao of Pooh, which I have probably read close to dozen times and a book that I highly recommend. We have both also tried alternative therapies to attempt to cure what ails us. I have been seeing a chiropractor for almost 3 years and have used acupuncture off and on during that same period. One of the biggest differences between Steve Jobs and me is of course our bank accounts. I have often wondered that if I was able to throw millions and millions of dollars towards a cure for ALS, would it happen? For all of Steve Jobs money (an estimated $8.3 billion in 2010), he was not able to cure himself. The thought that bothered me, immediately following his death was that, if he could lead a healthy lifestyle, both in mind and body, and he had unlimited resources, and he was still not able to cure himself, what chance do I have? Recognizing that pancreatic cancer and ALS are worlds apart, I still sometimes wonder if my attempt at a healthy lifestyle is worth it and am I just biding my time until the inevitable?

The Post

For those of you that have access to my Facebook page, I'm sure you're already aware of what I am referring to. Earlier this week, I was feeling a bit low and had what I have been referring to as "a perfect storm." I was experiencing a day where I was having a physically difficult day, along with a mentally difficult day, and the two kind of joined together and just snowballed from there. As a result, I posted the following update on my Facebook page Tuesday night: "I used to feel so much better after a good cry. Not so much when you are unable to wipe your own nose or dry your own eyes. Have I mentioned lately how much ALS sucks?" Without getting into the specific details that put me over the edge, that comment was more of a reflection of my reaction to statements that were made to me during the previous week at work. During the previous week, a number of people had come into my office and told me how good I looked. Not exactly comments that would make somebody cry. As one friend had said to me when I was telling him this story "would it make you feel better if I told you that that you look like shit?" The honest answer is, yes, sometimes it would. At that particular moment on Tuesday when I reached my lowest, I was thinking to myself that if only all those people that thought I looked so good could see me now. My typical response when people have told me how good I look (and I recognize they're making that statement in relation to how well I look with the fact that I have ALS. After all, I know I'm no Jeff Tisman!) is to respond by saying "you know what they say; it's better to look good then to feel good." Well, on Tuesday I was not looking good or feeling good. I recognize that people tell me how well I look for a number of reasons. These include that I look good for someone who was diagnosed with ALS 4 1/2 years ago. I also know that sometimes people don't know really what else to say. I know that people want to say something positive, and for the most part, with the exception of last Tuesday, I try to maintain a positive outlook and continue to put my best foot forward.
It bothers me sometimes, and I realize that this is totally my problem and/or my perception, that people sometimes minimalize what I'm going through, what I am experiencing, and the extreme effort it takes me to get through the day. When I hear people say "you look good" sometimes... not all the time, but sometimes... what I hear is "oh, I guess things are not that bad." Not too often, I will even here in my head, “what a complainer and a whiner." So, what does all this mean? I'm not really sure it means anything. Do I want people to stop telling me that I look good, and instead tell me that I look like shit? No, not really.

The e-mail

I have talked several times throughout this blog that part of my intent was to leave a message behind for my daughter's in the event that I would not be able to deliver them myself. Hopefully, if it comes to that, this blog may give them some insight to who I was, what I thought, and how they were a part of my life during this period. In short, I believe that Sydney and Emily are the main reason why I am still here today. As I watch them grow up, I become more proud of them every day and my biggest fear is that someday, I may not be able to tell them how much I love them and how much they mean to me. I am also painfully aware that someday, I may not be able to sit with them and start a sentence with "I remember one time when ..." or "I remember the day when...". Therefore, I had the recent idea to create e-mail addresses for both girls and I have taken to sending them quick little e-mails about things like how much I love them, or something that they did or said on a particular day that made me smile. I hope that someday I will be able to sit with Sydney and Emily and read the e-mails together, but I realize that that just may not happen. If that is the case, it will be up to Tracey to decide when Sydney and Emily would be ready to read the e-mails that I have sent them. If anyone else is interested in sending them an e-mail, there addresses are as follows:

Sydney: smmnj16@Gmail.com


Emily: emmnj25@Gmail.com


The e-mails that I am sending the girls are private thoughts between me and them. If you choose to send them an e-mail, please know that I will not be reading them, and that they most likely will not be read for another 10 years or more. If it is something that you would like me to read, I would encourage you to copy me at dmnj16@Gmail.com
The walk

The ALS Walk for a Cure taking place in Philadelphia is exactly 3 weeks from today. As of yesterday, we have raised over $4400. Our goal for this year was a modest $7500 in comparison to the nearly $15,000 we had raised last year. I am still hoping that we will exceed our goal as we get closer to walk day. Additionally, we have approximately 40 people to sign up to walk with us. Our goal is 75, so if you are thinking about joining us on November 5, or if you would just like to make a donation, you can do so by selecting the following link (ALS walk). Remember, if you plan on walking, it is mandatory that you sign up to register to walk. Even if you are unable to walk, or, if you are unable to afford to donate at this time you can still contribute by signing up as a "virtual Walker" and raise funds by having others contribute in your name. Once you have registered, the website can assist you with fund-raising letters and e-mails. I have said this many times, but I'm still overwhelmed by not only all the people that have signed up to walk, but in their dedication and enthusiasm to help fund raise for the cause. I can't thank those of you enough, who have signed up, donated, raised funds, and have continually supported me, Tracey and the girls.

Monday, September 12, 2011

Post 32 - "We Are Family..."

On the evening of Friday, September 2, as most people were heading away from the shore, Tracey, my brother-in-law Walt and I were heading towards the shore to look at a handicapped van that I found on craigslist. Tracey and I had made the decision to buy a used van ourselves after attempting to deal with the Division of Vocational Rehabilitation (DVR). The purpose of DVR is to assist people with disabilities in obtaining or retaining employment. In my case, we were looking for some financial help to assist us with the purchase of a handicapped van so that I may continue to work. Just as I predicted several months earlier, I am now almost totally confined to a wheelchair for mobility purposes. Newly modified vans typically start in the mid-$50,000 range. Price for new vans varies depending on the make, mileage and year of the vehicle. Used vans at dealerships run around $30,000 typically, for a van that is about eight years old, with about 75,000 miles. It sounds like a rip-off to you, it is. The problem is that DVR will only provide you with financial assistance if you buy a new van or a used van, through a state approved dealership that is less than three years old, with less than 30,000 miles. Used vans meeting this criterion often cost around $40,000 or more. DVR only assist with the cost of the van modification and not the van itself. So, for a new van costing $55,000, DVR would provide me with anywhere from $12,000-$15,000 to help cover the cost of the van and probably around $8000-$10,000 to cover the cost of a used van meeting their criteria. With DVR fails to realize is that if I could afford $55,000 for a basic, no-frills, no extras, handicapped van, then I probably wouldn't need the $12,000 or so they would give me. I can even begin to explain to you, the bureaucracy and red tape involved in going through this process with DVR. And I am someone who is familiar with DVR, as we work closely with them in getting student services. I do not know how anybody who is not familiar with the system, or has limited education or a mental disability is able to get services. I am a person with a Masters degree in Social Work (not that that makes me smart but it does provide me with some insight to social service agencies) and over 10 years administrative experience in working with government agencies, and I had difficulty following the logic and understanding their process. In the end, it was just much simpler to buy something used from a private seller, at a much lower cost, and pay completely out-of-pocket. I would really love to know how much of their budget goes unused because the regulations and requirements, I'm sure, make it prohibitive for people to use. Maybe someday when I have time on my hands I will look into this. For most people who are working, it would probably make more sense and obviously be much easier to go on disability than to access these services. Luckily, we could afford to pay out-of-pocket and get something at a reasonable price. Otherwise, I would've been forced to go on disability much sooner than I would have liked. Of course, going on disability means the government is now giving me a check, paying my health insurance, and no longer collecting payroll taxes. I can assure you, the government would make out a lot better by allowing people to buy used vans from private sellers, rather than going on disability and milking the system, as I would have had to do. I hope the state of New Jersey does something worthwhile with the money that I saved them. In the end, we ended up purchasing a 2003 Dodge Caravan with 82,000 miles for $8500 (similar vans at dealerships were going for between 15,000 and $20,000, and of course, this van is not allowable under DVR regulations). The family that we bought it from was super nice and glad to see the van was going to another family that could use it. The van has a ramp that automatically extends from the side passenger door, allowing me to drive right up into the van and position my chair in the front passenger seat, which has been removed. Thankfully, Tracey no longer has to set up and take down ramps in order to get my chair into the van every time we go some place. We actually had gone to look at another van a week before this. Thankfully, my brother-in-law Walt was able to go with us that time also. Upon first sight, the van did not look like it was in that bad of shape, although it was pretty beat up. The undercarriage of the van, however, was a real piece of crap, rusted throughout and a safety hazard. Without Walt's assistance, we probably would've ended up buying that van that day. Although we consider ourselves very lucky that we were able to find this van at a reasonable price, it still had me down most of the weekend. To me, this was another $8500 that I would rather be spending (or saving) on millions of other things, rather than a handicapped accessible van. For me, it felt like I was selfishly taking money from my family. For those of you counting, that now makes over $13,000, when you include the $4500 we had to spend on the co-pay for my wheelchair, we have spent in out-of-pocket costs in the last four months. You can also add in almost another $900 to cover tax, tags and the cost of some minor repairs and some routine maintenance that we had done on the new van at Lucas Dodge in Lumberton, New Jersey The cost would have been more, but Walt (who has friends everywhere and always bumps into someone he knows where ever he goes someplace) has a friend at Lucas Dodge, who cut us a huge break on the cost. If anyone is ever looking for a Dodge, Chevrolet, or Jeep, Tracey and I cannot say enough about how nice the staff was at Lucas Dodge, and how helpful they were. Overall, I would put the total cost well over $15,000, when you account for everything else we have purchased to make life easier for me. $15,000 that could have gone to college funds, retirement accounts, much needed home renovations, family vacations and dozens of other things. This really does not sit well with me and is just one of the reasons why I'm committed to continue working.
The family that we bought the van from allowed us to drive it home that night under their tags (I told you they were very nice) and now like the rest of New Jersey, we hunkered down and waited for hurricane Irene. When the rain had ended early Sunday evening, Tracey had gone outside to survey for property damage. All she could find was some small branches scattered throughout the yard. During the course of the storm, we did not even lose electricity even though our surrounding area has many tall trees and aboveground electrical wires. On Saturday evening and again during the day on Sunday, Tracey had gone down to the basement to check for flooding. Thankfully, not a drop. We considered ourselves very lucky with our new van in the driveway and our undamaged home, wondered aloud if our luck was beginning to change. On Monday afternoon, Tracey brought some things down to the basement for storage. Still, all clear. On Tuesday, Tracey went down to get something for dinner out of our basement freezer. I heard her open the basement door, take a couple of steps, and then I heard "oh shit!" A couple of seconds later Tracey was back upstairs and telling me that we had about 6 to 8 inches of water throughout the basement. For those of you that do not know, we have a very large basement full of crap. At this moment, we had a very large basement full of wet crap. Not really knowing what to do, I told Tracey to call a plumber. I began first by calling my brother-in-law Joe, followed by my brother-in-law Walt, to see if they could come over to help. Tracey was in tears, the plumber could not come for another hour, Joe was not answering his phone and Walt was on his way home from work. I was confined to my chair, unable to do anything. Eventually, Joe was able to come over and tried to get the sump pumps working. We would later find out that one of the pumps had probably stopped working a while ago and the second one must have stopped sometime between Monday afternoon and Tuesday evening. Walt, who happens to be in sales and works for a company that sells plumbing equipment happened to have two sump pumps in his van that he was recently demonstrating at a tradeshow. Still dressed in his business attire, Walt managed to wade through the 8 inches or so of water and installed both sump pumps, so we could begin the process of drying out the basement. In the meantime, Joe, along with Tracey's father had also arrived by now, was helping Tracey get as much stuff out of the basement and into the backyard. As everyone was buzzing around me, going in and out of the house, going down and back up from the basement, all I could do was sit. This was one of the most helpless feelings I felt since my diagnosis. I felt like a lump of raw meat, and not even a good cut of meat. Had I been healthy, maybe I would have recognized that the sump pumps had stopped working, which would have prevented this mess. Maybe I would have recognized that one of the sump pumps had stopped working a while ago and had it replaced. At the very least, it could have been handling the cleanup and taking care of my home like I'm supposed to. Both Joe and Walt returned several times over the next few days, to assist Tracey with the cleanup. I really don't know what we would have done without their help. Tracey's mom and dad, along with my mom and sister, pitched in whenever they were able. Tracey, in addition to getting me up and dressed for work, driving me back and forth, and taking care of the girls and our dog (by the way, she has ringworm), cooking meals, doing laundry and everything else on her plate, worked from morning to night, clearing out the basement and scrubbing it down with a bleach solution to prevent mold.

After a few days, when we had time to reflect, we both realized that things could have been much worse and many people did have it worse. Tracey and I were both very grateful that not only do we have family that lives close, but that they're willing to drop everything to come help us when we need it. As a final culmination to the week's events, yesterday I had a slight mishap in the shower, when I fell off my shower seat into the tub. Thankfully, it was not that far of a fall and landing in the bathtub is not as bad as falling on a hardwood floor or concrete. Unfortunately, being 6'2" and falling into a bathtub that is maybe 4 1/2 feet long is still not that comfortable. To make matters worse, as I fell, I knocked a bottle of shampoo into the tub, which I proceeded to fall on, thereby covering myself and the entire tub in shampoo, making it that much more difficult for Tracey to move me. After some considerable effort, Tracey was able to get me onto my back and then into a seated position, but that was the best that she could do. We were faced with two choices. Call 911 or call Joe. I opted for my brother-in-law, who once again immediately came over. After all, what could he have better to do on a Sunday morning than get his wet, naked, dead weight, brother-in-law out of a bathtub.

I would be remiss without mentioning two more events that took place over the past week. Last Sunday, my sister Cari and brother-in-law Joe celebrated their 18th wedding anniversary. Tracey and I took the girls over to their house to celebrate with them. Sydney and Emily had one last swim in the pool for this summer with their uncle, we enjoyed a barbecue dinner and had some fun playing Wii. It was a fun, quiet evening spent with family marking a milestone. This past Friday, we also marked a milestone of sorts. On Friday morning, my father-in-law concluded more than six weeks of radiation treatment for cancer. Apparently, at Fox Chase, where he was being treated, they have a tradition of ringing bells. Whenever a patient concludes their treatment. My mother-in-law thought it would be nice if the family could get together to have our own bell ceremony to honor my father-in-law. Friday evening, Tracey, I and the girls joined my mother and father-in-law, along with Tracey's brother Walt and his family in celebrating my father-in-law's recovery. We spent about two and half hours in a restaurant eating, drinking, laughing and having a good time. As bad as I felt about myself, after laying out the money for the van and as I sat around and watched everyone else take care of what I perceived as my responsibility, none of those thoughts crept into my mind, when I was with my family celebrating life events. I think what made this even more poignant and inspired me to write about this today, where the thoughts of September 11 and what so many other families went through and continue to go through. I don't mean to sound cliché, but I can't thank the people who lost their lives that day, and their families enough for allowing me to appreciate the family that I have.

Tuesday, August 23, 2011

Post 31 - "I feel like a Phoenix rising from Arizona"

If you're anything like me and spend your time on the Internet researching ALS and visiting ALS websites and forums, you might have come across some good news in the past 48 hours. In a recent article published in the journal Nature, researchers at Northwestern University claim to have possibly found the cause of ALS (Cause of ALS is found, Northwestern team says). Although all the ALS websites and forums were abuzz, most people, like me, were cautiously optimistic. Then, this morning, I saw an online article on CNN and a video report by Dr. Sanjay Gupta (Groundbreaking new study finds a cause for Lou Gehrig's disease). I knew instantly that if Sanjay was reporting on it, then it had to be the real deal! After reading several articles on the new findings, I'm ready to remove the "cautiously" from my current optimistic feeling. I know I've made this statement before, but today, this is the best news I've heard regarding ALS... and many other people in the ALS community agree with me. If you do not feel like reading any of the articles, I will try to sum up for you, what they have found. Basically, the leading researcher has found a protein in every ALS patients he has studied over the past 25 years. This protein is responsible for picking up used and/or dead motor neurons (cells) within the body and brings them back to the brain, where they are cleaned up and "recycled" for use again. In ALS patients, it appears as though this protein is not working correctly and the used/dead motor neurons remain in the nerves and block new cells from carrying messages from the brain to the muscles. This new discovery will be beneficial to ALS patients if researchers could find a drug that can either restart this protein, or at least clear the nerves of the used/dead motor neurons. Think of it as that big recycling truck that comes around once every two weeks collecting your bottles. For most of you, the recycling truck takes your used bottles, brings them back to the recycling center where they can be cleaned up and used to make new bottles, which can now be used to carry new beverages. For me, that recycling truck never drives by my house picking up my recycle bottles. Since my recycling bucket is full, I cannot put any new bottles in and thus my recycling system is broken.


 
Realistically, what does this mean for me? That is hard to say. As I said before, optimistically, it is a wonderful thing, but realistically, who knows. Realistically, it could be another two or three years before a drug is developed and ready to be tested (For which I will not be eligible for the drug trial). After that, it would be a minimum of two years that a drug could be approved that could show some benefit for me. And that is assuming that the drug showed miraculous results immediately. Typically, it takes approximately 5 years to bring a drug to market, so it is quite possible that any drug treatment could be as much as eight years or more away. Also, as far as I'm concerned, this drug would probably only stop my progression and maybe provide me with minimal physical improvement. For me, my best bet for a return to normalcy would still probably lie with stem cells, which would be needed to replace all the motor neurons I have lost to date.

 
If it sounds as though I'm being negative, I can assure you, I'm not. As I said previously, this is the greatest news I've heard regarding ALS since my diagnosis, and I'm feeling optimistic about its outcome. I do however want to remain realistic. But then again, who knows. When I went to bed on Sunday night, as far as I knew, they were no closer to knowing the cause of ALS than they were 70 years ago. Then come Monday morning, they have a possible cause, and my man Sanjay is taking to the airwaves.

 
This great news has started me thinking about two things. First, what I like to call my Phoenix list (this is a name I just came up with and will have to do until I can think of something better. Your suggestions are welcome). This is opposite of a Bucket List... a list of things you would like to do before you "kick the bucket." I call this my Phoenix list, because like a Phoenix rising from the ashes, these are the things I would like to do when I am "reborn" and no longer battling ALS. Several things on this list, I have thought about over the last few years but in the last 24 hours, I have really given serious thought about the things I would like to do first, as soon as I am able. In no particular order, my Phoenix list includes:

 
  • Taking Tracey back to Napa, California. Tracey and I went to Napa, a little over three years ago for a long weekend. For anyone who has never gone, I would certainly suggest it. And this is coming from a non-wine drinker. During that trip, Tracey learned a lot about wine and since that time has talked about wanting to go back. Now that she is somewhat of a wine connoisseur. The least I can do is drive her around Napa for several days while she samples wine to her heart’s content.
  • Taking Tracey and the girls to Disney World. Anyone who knows me knows that I have a personal beef with the rat and that Disney World is the last place I would ever personally choose to go. So far, however, we have gone twice. Both times with family, at my insistence, so that they would be able to help us (and when I say us, obviously, I mean, Tracey) with the kids. It would be nice to go with just the four of us, since Tracey and the girls love Disney World, and do the "family" thing.
  • Taking Tracey and the girls camping in Cape Cod. Before we were married, Tracey and I had gone camping several times in Provincetown, Massachusetts. We looked forward to it every summer. We would spend days on the beach, riding bikes and going whale watching. In fact, we got engaged on the way home from one of our Cape Cod camping trips. After we were married, we talked about taking family vacations in Cape Cod.
  • Before heading up to Cape Cod, I would just like to pitch my tent in the backyard and spend a night camping out with the girls. I think they would have a great time.
  • I would like to make Tracey breakfast in bed, every Sunday morning for a year. Additionally, I would make sure that I or the girls did not bother her to at least noon.
Personally, some things that I would like to do included:
  • Buy a new pair of hockey skates. I look forward to that day when I can lace them up, hit the ice, and skate around the rink. To me, there is nothing quite like it when your feet first hit the ice and you take that first lap around. Second to getting back out on the ice, of course, would be to start playing hockey again.
  • Go to the batting cages. Just like first getting on the ice, there is nothing like the feeling of squarely hitting a ball with a bat and making solid contact. I would like to swing until my arms got sore and tired. After that, join a softball league. 
  • Take a hockey road trip. Back in January 2008, me and two friends hit the road and visited three cities in four nights (Pittsburgh, Buffalo, and Toronto), taking in three hockey games. We also lucked out because the one night we weren't seeing a hockey game, Rutgers happened to be in Toronto playing in a football bowl game. Besides the fun me and my friends had, I got to see some old college friends, and fraternity brothers while in Toronto.
  • A guy's weekend in Vegas. Need I say more?
The second thing that I've been thinking a lot about during the past 24 hours is the upcoming ALS walk in Philadelphia in November. Since my diagnosis almost 5 years ago, never has the possibility of a treatment or a cure ever been so real and so close. I feel now that I have to do more than ever to make the above a reality.We already have over 15 people signed up to walk and are well on our way to our first $1000.  If you're interested in signing up to walk with us, and raising money, or would just like to assist in raising money or would just simply like to make a donation, you can do so by selecting this ALS Wing Fighter link.Thank you to those of you who have already signed up to walk and/or have donated to the cause.

 

Thursday, August 18, 2011

Post 30 -Courage, Faith, Strength and Hope

 

Getting my birthday gift from Emily
I don't know about you, but it seems like the summer is flying by for me. It seems like it was just a few days ago I was telling you all about my Fourth of July shore house experience. Since that time, I've celebrated a birthday (my 43rd, for those of you counting) and a wedding anniversary (my 8th). Overall, July and the first two weeks of August have not been easy. Whether it is the weather or something else, as of late, I have been experiencing incredible weakness and fatigue. After spending five days at the shore in late July, in which I spent most of the time asleep with a stomach virus, low-grade fevers and my traditional fatigue and weakness, I decided to pay my primary physician a visit. To make a long story short, blood tests indicated that I had a possible blood clot, some fluid around my heart, and a possible diagnosis of rheumatoid arthritis. After some follow-up testing it was determined that a blood clot did not exist. I'm currently in the process of scheduling appointments with a cardiologist and a rheumatologist. After doing some research on rheumatoid arthritis, I've come to find out that symptoms can include fatigue, loss of energy, lack of appetite, muscle and joint aches, and stiffness. Muscle and joint stiffness are usually most notable in the morning and after periods of inactivity. It can also cause weakness of the bones as well as the muscles. Just what I needed, right? These symptoms sound eerily familiar. I was kind of hoping that the fatigue, lack of energy, and muscle pain were just some symptoms of menopause (I saw it on a commercial) but my doctor has assured me that that is not the case.


Some shore time with Sydney





Great Adventure
Although I've taken very little vacation time over the summer, I tried to make the most of it by spending a lot of time with Tracey and the girls. Besides spending some time down the shore, we have also been to Great Adventure, the Please Touch Museum in Philadelphia, Storybook Land, Monmouth racetrack (it was too hard to sneak the girls into the casinos in Atlantic City, and you're never too young to learn how to gamble), and the movies. Additionally, we have spent a good many days at my sister’s house enjoying her pool. One trip that Tracey and I took without the girls was to my quarterly appointment at the ALS clinic in Philadelphia. This trip was somewhat difficult for me than those of the past. Previously, I had always seen the other ALS patients in the waiting room and around the office and had felt somewhat lucky that my disease had not progressed to their level, hoping it would not progress to their level. This time, however it was the other patients in the office who were walking and using their arms and legs in ways that I no longer can and I could not help but think they were looking at me, hoping that they would never progress to my level. Otherwise, this visit was typical of all the rest. I did lose another 5 pounds, which the doctor was not happy about and my breathing score dropped about eight points, which again, they did not seem so concerned about. I had my usual heated "discussion" with my neurologist regarding my vital capacity (breathing) score, drug trial exclusion criteria, and the apparent worthlessness to date of ALS research. By now, she has come to expect my ranting and raving. Then, I was on my way home. No better, no worse... and continually frustrated. 
Monmouth Park



I can honestly say that I am somewhat glad that summer is finally coming to an end. The heat and humidity kicked my ass and forced me to bunker down in the air-conditioning (just so you know, I hate air-conditioning) way too many days that I would have cared for. And although the morning still remains the toughest part of my day and getting up for work and getting out of the house seems to get incrementally harder each day, as the day goes on, I seem to continue to feel better and function better on those days that I get up and get moving. The end of the day, of course, is another story. Because of the heat, the fatigue, the weakness and whatever else seems to be bothering me on any particular day, I have typically been getting into bed between 7:30 PM and 8 PM on most nights, over the course of the last six weeks. Still, when I have to get up and out of bed, whether it is for work or for a family excursion, thankfully, on most mornings, I'm still able to do it. I am hoping that once September rolls around and my regular work schedule once again becomes consistent, that I will be able to get into some sort of groove.


Not only am I looking forward to a new school year, and hopefully, some sort of rejuvenation, but I am also looking forward to Oktoberfest beer and this year's ALS walk in Philadelphia. I have previously talked about the tremendous turnout and support I received last year, when we walked for the first time. Just to refresh your memory, Tracey and I were hoping that we could get about 25 people to join us and that we would be able to raise $2500. It turns out that our estimate was way off. Instead, over 100 people walked with me as an ALS Wing Fighter, and together we raised almost $15,000. Thinking about it nine months later, I'm still overwhelmed by the love, support and generosity of my family and friends. When I look back on that day, I remember the feeling of empowerment and hopefulness that I felt last November. Although I only walked a small portion of the route, I remember telling people that day that I felt like I could walk the full 2 miles. I look forward to experiencing that once again, come this November.


Storybook Land

Once again, I welcome you all to join me and my family to walk with us at this year's ALS walk in Philadelphia, taking place again at Citizens Bank Park on November 5 to help raise funds for ALS research and patient support. We will once again be registered under the name of the ALS Wing Fighters. You can register to walk with us by selecting the following link (ALS walk). If you are unable to walk with us on that day, please consider assisting us by signing up as a virtual Walker and helping to raise funds or by making a donation to our team. Either way, your support would be greatly appreciated. For additional information about the walk, and to see some pictures of our team, I invite you to watch the following video, courtesy of my friends Christine and Larry (Episode V - The ALS Wing Fighters Continue to Strike Back).





 



Thursday, July 7, 2011

Post 29 - 4th of July, Long Beach Island (RIP Big Man)

Over the last several years, I have tried to stay away from the "why me" type of thinking. Admittedly, those thoughts occurred quite often early on, but in the last couple of years or so, for the most part, I've been able to move beyond that thinking. Actually, I have been more curious as to "why the F is this happening" in general, rather then "why" is this happening to me, specifically. To me, there is a difference. In attempting to stay away from the "why me" head game, I instead will frequently play a different head game, what I like to refer to as the "If I" game. Often, when I am alone, and my mind begins to wander, I will begin to think to myself, "What would I be doing now" or "where would I be right now,” if I didn't have ALS?

This past holiday weekend, Monday specifically, I got caught up in the "why me" game. We had gone down to Long Beach Island to my in-laws shore house to celebrate my father-in-law's birthday, which also happens to be the Fourth of July. Tracey and I have been down there every Fourth of July since we started dating. Starting last year, was the first year we did not stay over for a long, extended weekend. Between Tracey's parents and her siblings and their families, someone is usually down at the house, especially during this week, but because of various doctors’ appointments, Little League games, and other scheduling conflicts, the house was going to be empty for several days this week. If not for the ALS, we most certainly would have stayed down there throughout the weekend and into the week, at least. Instead, we drove down on Monday morning and returned home later that evening. As I sat on the deck Monday afternoon, overlooking Barnegat inlet, I began to think "why me." There was no use in thinking "if I" because I already knew where I would be and what I would be doing if not for the ALS. All I could think about was "why me." Unproductive to say the least. Here we were at a beautiful shore house, on a beautiful day, with a beautiful forecast for the week ahead, with free time on our hands. An opportunity that most people would thoroughly enjoy, and here it was, just out of reach for me, because of the ALS.

My in-laws, as well as Tracey's brother and his family, who were down at the shore house on the fourth as well, did everything possible to assist me and make me as comfortable as I could be. The simple fact of the matter is that the shore house, along with 99.9% of the rest of the world, is not conducive for somebody with ALS. "Why me?" The house is up on stilts (approximately 15 steps up to the front door), making it very difficult for me to get in and out. There is actually seven steps that lead up to a landing, before going up an additional seven steps to the right at a 90° angle. Because of the landing, I was able to take a short break and sit for a while, after completing the first seven steps, with Tracey's help. I was not concerned about going up the steps since I had practiced several days earlier in my office by walking up to the second floor, again with Tracey's assistance. The problem was coming down. In my attempt to come down the stairs at work, I fell backwards after the first step and hit the back of my head on a cinderblock wall. I don't think I ever hit my head that hard. Although I did not blackout, both my fingers and toes were tingling as though I had just received an electroshock. I ended up with a golf ball sized lump on the back of my head and one tremendous headache. I eventually ended up coming down the steps on my butt.

Should we choose to go to the shore house again, getting up and down the steps will continue to be a formidable task for me. Additionally, once inside the house, it is difficult for me to find a place that I'm comfortable. Currently, we have plans to stay at the shore house for about 10 days at the end of July into the beginning of August, Tracey and I will have to decide very shortly, how feasible that plan really is. Once I get into the house, it will be difficult, if not impossible for me to continually use the steps and to come and go as I please. Although I would have no problem sitting on the deck all day and doing nothing, I don't think the girls will have the same sense of enjoyment. The girl’s favorite activity when we go to the shore is of course, going the beach. Obviously, they can go off and do their thing and I can stay behind, but that kind of defeats the purpose of a family vacation. As much as I would like to go to the beach, the playground, the amusement park and any other activities that we typically do on our summer vacation, I would like to think that they would want me there with them as well. Again, I'm just not sure how realistic this is.

On Monday, I had posted on my Facebook page, the difficulty that I was having getting in and out of the shore house. Several people had responded, offering suggestions on how I may be able to get down the steps by recommending that I slide down, using various methods. Although I am very thankful for the suggestions and glad that so many people wanted to help, this unfortunately would not do the trick. First, I really have no way of getting down to the floor, except by falling. Second, once I slid down the steps, I would still have the same problem in trying to get up, which would probably be just as difficult, if not more so, than trying to walk down the stairs. Tracey and I are both convinced that there is an easier way to get me up and down the stairs, but we just haven't figured it out yet.

For a number of reasons (work schedules, kids’ activities, etc.), Tracey's brother and sister, and their families, are not able to come down to the shore house as often as they used to. We on the other hand, due to the flexibility in my summer schedule and the girl’s ages, have the freedom to come down to the shore house whenever we would like. In fact, if I set my schedule up right, we could probably stay down there for almost the whole summer. Therein lies "La Forza del Destino! In German, it's Die Macht des Schicksals" (Some random TV trivia - Can you identify the TV show associated with those words.  Click here for the answer.  The full line is at the end of the clip). A shore house at my family's disposal that we can’t use. Sometimes it feels like something out of a twilight zone episode.

In a way, ALS has contributed to keeping me stress-free and has saved me a lot of frustration, and perhaps a few dollars. Without the ALS, there are several home improvement projects that I would have undoubtedly attempted that are certainly above my skill set. Sometimes, on a nice day when I'm sitting in our living room looking out into the backyard and playing the "if I" game, I will think to myself that if not for the ALS, I would have built the girls a tree house.... if not for the ALS, I would have put in a paver patio in the backyard... if not for the ALS, I would've cut some trees in the backyard... if not for the ALS, I would've done some major landscaping all around the house. There is a chance that some of these projects may have been completed, if not for the ALS, but the end result surely would not have looked as well as it looked in my head at the onset. I also have a habit of severely underestimating, not only the skill level needed to achieve these tasks, but the time needed as well. Many a time, I have attempted a lot less involved home project in which I underestimated the time to complete by not hours, but by days. This defect in my thinking has also applied to cost analysis. Usually, my initial estimate for completing a home project is two or three times less than the actual cost, thereby increasing my stress and frustration, especially when the final product does not meet my expectations.

On rainy days, I will usually picture myself painting a room or cleaning the basement. Tasks that I can easily accomplish. However, on occasion, I will think to myself "you know, if not for the ALS, I bet I could have finished the basement." Like there was a chance in hell of that ever happening! That's not to say, I might not have given it an attempt. I probably would've spent countless hours researching. Paid many a visit to Home Depot and invested in all sorts of tools and supplies, and actually may have started the project (of course, underestimating the time, cost, and skills needed to complete the project) before realizing how far in over my head I really was. Eventually, I would have had to call in a professional to not only finish the job but to inevitably fix whatever I broke trying to do the work myself.

Some may think that I am torturing myself by playing the "if I" game, but to me it is often a welcome distraction and an uplifting experience for two reasons. First, I feel relieved, that I'm not putting myself through the stress, frustration and second-guessing over starting some of those projects. Secondly, that just because I can't do those home projects now, doesn't mean that I cannot torture myself in the future by attempting to do them, when I am able. Maybe we don't have a nice brick patio now or a finished basement (with my Man Cave), but that doesn't mean that we never will. For now, I can make my list of all the things I would like to do in the future, and if it doesn't happen this summer, then maybe next summer, and if not next summer, then maybe the summer after that one.

For better or for worse, I always try to end things by convincing myself that this is only temporary, that things will get better. That's the thought that I go to bed with every night, and usually the first thing I think every morning. I'm sure someday when I'm not down the shore, I'll be sitting in my backyard out on the patio. That is the power of fate!

Thursday, June 23, 2011

Post 28 - My Own Little Two-Part Miniseries

 I will apologize in advance for the length.  It has been sometime since I last wrote.  I had intended to write last week, but I was temporarily sidetracked. More about that later. Earlier this week, my computer came down with another virus, and I was finally able to get it fixed today.  Overall, from a physical standpoint, it seems as though there has been little change over the past three months.  I continue to get weaker throughout my body, but the changes have been subtle, to say the least.  The battle that I continue to wage with my body has been just as tough on my mind. And just like the physical aspect, some days are better than others.

Part One - Guess Who's Coming to Dinner

2 weeks ago, I took what was rather a daring step for myself. I went out to dinner with a friend. This marked the first time I'd left the house without Tracey since I'd gone out with a group of friends back in early April. I had a little less anxiety about that trip, because I really did not plan on eating much food and only intended to have a couple of beers. Also, I was much more functional at that time, still able to navigate with my braces on. I was not relying on my Walker at this point, and I was still able to get myself up and out of a chair. I was going out with my good friend Jeff (Jeff Tisman Photography - portraits, a specialty) and even though I felt comfortable going out with him, Tracey has been my constant safety blanket. She has become very adept at anticipating my needs, and subtly assisting me when necessary. I made it to the restaurant and through the meal with little difficulty. This was not only a major relief, but a major accomplishment for me as well.

Several days later, we attended the baptism of a very close family friend's son. Afterwards, we went to a restaurant to celebrate with the family. All in all, there were probably about 35 people in our party, in addition to a full restaurant. This was to be my first experience in utilizing my power wheelchair (actually, I believe it is PC to refer to it as a "power chair") in a close, confined setting with many people. It was also going to be the first time that I used the chair at the table for a meal. My anxiety actually started about two weeks before the event, but began to increase dramatically a few days before. Feeling anxious is nothing new to me, and it is often moments like this where my compulsion to self- analyze kicks in. As I began to contemplate the possible reasons for my anxiousness, I almost immediately ruled out self-consciousness, with regard to using the power chair. Although I've had many bouts of insecurity throughout my life (in addition to the anxiety) over a whole host of issues, self-consciousness regarding my appearance has never really been one of them. Anybody who saw me at work after my last haircut could attest to that. In the end, I think I realized that my anxiety stemmed from Tracey and the girls. With Tracey, I'm always worried that she has too much to do and I'm just one more thing that she needs to worry about and plan for. To go to a restaurant, I know Tracey's already thinking about packing up everything that she may need for the girls and me, worried about menu choices and food options for Sydney, worried about making the environment accessible and as normal as possible for me, and in general, keeping all of us happy. I know she is worried about me enjoying myself on having a good time. In short, I worry about Tracey worrying. Are we a compatible couple or what?

The other contributing factor to my anxiousness this day was the girls and this has been a recurring theme. As Sydney gets older, she is becoming much more aware of what is being said and what goes on around her. It seems highly probable that Sydney will be the more sensitive of the two. Much like her father (I was still crying in school all the way up until second grade and used to cry whenever my mother left the house). Sydney has asked questions about why I need mommy's help to do things, why I wear leg braces, why we have a ramp in front of our house and several similar questions. For now, we have told her that daddy's arms and legs get tired and these things make it easier for me. She has asked if I will get better, to which we simply respond that we hope so, and she has also made reference to a time when my legs and arms will be better. I am sure Emily will have similar questions in due time as well. My concern about Emily is what her memories will be of me. I was able to do a lot of the typical daddy/daughter bonding things with Sydney that I was not able to do with Emily. By the time Emily was one year old I was no longer able to hold her and I was starting to have great difficulty getting up from the floor, which hindered my ability to play with her. I never had the opportunity to give her a bath or feed her at the table, or spend meaningful time alone with her. I worry that I was not able to establish emotional connections with her. I also worry about the girls worrying about me but I'm also concerned about them becoming self-conscious about having a father in a wheelchair. Growing up and being amongst one of the first kids in the neighborhood to come from a divorced family at the age of 8, and living without a father present in my life from the age of 12, left me feeling very self-conscious knowing that my family situation was very different from that of most of my friends. That is not something I want Sydney and Emily to experience. I am concerned how they will react or how they will feel when their friends see their father in a wheelchair and began to ask questions, or when their friends ask why their father doesn't coach soccer, or help out with Girl Scouts, or 1 million other things. It's not their fault, and it's not fair to them that things have to be different.

Needless to say, everything worked out well at the restaurant. I was able to park my chair in a nice spot and enjoyed some Coronas, calamari and chicken français. I was even able to hold my fork better than I expected, before tiring out towards the end of the meal. I enjoyed a lot of good laughs with my friends, and did not really feel out of place at all. Most importantly, neither did Tracey or the girls.

Part Two - That Was a Real Pain in the Chest

For the past month, as the school year starts to come to a close, for most people the workload starts to wind down. For me, this is one of my busiest times. I have to ensure that all services are provided prior to the end of this school year and have everything in place for the beginning of the next school year. In addition to working 12 months, unlike most other school personnel, my staff works throughout the summer as well, so there really is not an end of the school year for me, although this time of year is certainly less busy. Since I became a supervisor, I started a tradition where we hold our last department meeting of the year at the end of the school day and for the last two years we have met off school grounds, to blow off some steam and toast the school year, if you catch my drift. Our "meeting" was scheduled for last Thursday afternoon. On Thursday morning, when I got to work, I was experiencing some pain in my chest whenever I took a deep breath. Common sense would tell you not to take any deep breaths, which I attempted to do. By the time 11:30 AM rolled around, the pain came with every breath. I called Tracey and asked her to come and pick me up. I knew she was going to want me to go to the hospital and for once, I gave her very little argument. I did not think I was having a heart attack, but I had no idea what the pain was from, all I knew was that it really hurt. I told a coworker about the pain and she had the school nurse come down and check me out as a precaution. By 1 PM, I was in the emergency room, and by 4:30 PM, I was informed that I would be staying overnight for observation. Two of the most critical diagnoses were ruled out; heart attack and pulmonary embolism, which was good news. My blood pressure was much higher than usual and blood tests were coming back negative, except for some elevated levels relating to the heart muscle, but they were unsure of whether or not that was related to the ALS. I was having a lot of difficulty in the emergency room, not only with my breathing, but as far as trying to get comfortable. By not having much strength in my arms it was very difficult for me to move without assistance. I was unable to move from side to side or reposition myself in the bed. For the first time, I felt like what it would be like to be paralyzed from the waist up, and could not help but think that this might be my future.

Later on that night, after I was moved to my room and Tracey went home to take care of the kids, I had even more time to reflect. Again, I was unable to move in the bed, I was unable to move my arms so I was unable to adjust the bed up or down or put on the TV. I was not even able to press the call button to contact a nurse, if need be. It was going to be a long and uncomfortable night to say the least. Tracey had argued with me to stay, but I was insistent that she go home so that the girls could see her before they went to sleep and that she would be there when they awoke, to give them some sense of normalcy. Again, I did not want Sydney and Emily to worry. I thought about how this might be “good practice” for Tracey and the girls to experience life without me. I know, a little ghoulish but again, I could not help thinking how this may become our future. I managed to make it through the night with very little sleep and a lot of pain. Although I initially declined any painkillers in the ER, I agreed to take one around 7 PM, which did very little for me. At 3:30 AM, when the nurse came to check on me, I asked for another one, and this time it seemed to help. I slept from about 4 AM to 7 AM and the pain was somewhat reduced when I woke up. Tracey showed up around 8 AM, helped me eat my breakfast, and by 10 AM I was discharged and on my way home, feeling slightly better but still with no answers. The consensus between the ER doctor, a Cardiologist and my primary physician who came to see me, seemed to be that the pain was either caused by a muscle strain in my chest or a viral infection. It felt good to get home and see Sydney and Emily. Sydney's first question to me was "daddy, do you have pain?” I let her know that I was feeling better, and she seemed somewhat relieved.

I have never considered myself someone who is particularly afraid of death. In fact, if you ask some of my friends from my past they will confirm that in my younger years I used to predict that I would not live past 50. This prediction was primarily based on an article I once read in which it was stated that the life expectancy of left-handed males was much lower than right-handed males. It put the average life expectancy of a left-handed male somewhere around 50 years of age, and I have always figured myself to be average, at best. Although at no time during this episode did I seriously consider this possibly being "the end,” it did cross my mind, that regardless of the ALS or not, it could very well go down like this someday. When the pain started to get bad in my office and while I was lying awake in the hospital, I thought about how I would approach things if this had been something more serious with a much more potentially disastrous outcome. While at work waiting for Tracey, I looked at the many pictures of Sydney and Emily throughout my office. I felt very comfortable and at peace looking at their smiling faces. I filled my head with happy thoughts and memories of them both. I also did this quite frequently during the night at the hospital. Again, each time, my mood and spirit was instantly lifted. At times, I thought about how Tracey and the girls would be if things did take a turn for the worse, and came to the conclusion that they would be okay. I know that my family and friends would help look after them. I see how strong Tracey has become and how much Sydney and Emily continued to grow as individuals. As I go through this, I become more proud of the three of them, each and every day.

Tuesday, May 31, 2011

Post 27 - One More for the Road

For those of you unaware, May is ALS Awareness Month. This being the last day of May, I would feel somewhat remiss if I did not get one more post in during the month of May. For me, the month is ending on a particularly good note. On Sunday, we revived the tradition of our annual Memorial Day barbecue. This was a tradition that we started back when we are living in Franklin Park, New Jersey. We have had the BBQ every year we have lived in Chesterfield, except for two. The first year we failed to have the BBQ was in 2007, the year of my initial diagnosis. Since I had received my preliminary diagnosis from the University of Pennsylvania hospital in early May, I was not much in a partying mood, by the time Memorial Day rolled around. The other year, we did not have the barbecue, was last year, because I was simply in no physical condition to host a barbecue, and a little bit saddened by the fact. This year, the idea to have it once again, cropped up in my head somewhere around late April, but since it would have been physically impossible for me to do any of the preparation or work; I kind of let the idea just sit there. A couple of days later, as Tracey drove me to work; she suggested that we revive the tradition. I let Tracey know that I was somewhat thinking of the same idea, but it would have to be her decision since she was obviously going to be doing the majority, if not all the preparation and work. In years past, Tracey would handle the indoor food preparation and cleaning and I would handle the outdoor preparation and cooking, and my favorite part - the beer selection. This year, it would all fall on her. Half of me looked forward to the BBQ, while the other half felt guilty. I knew she was doing this work for me, more so then for her. We agreed that we would keep the invite list small, since we suspected that we might get a fair turn out, due to the ALS pity factor. We also agreed that we would consent to allow people to bring things to help us out. Historically, this has always been a no-no for our parties.



All in all, we had about 30 people show up. Besides the usual family members, we decided to invite friends that have been extremely supportive towards us since my diagnosis. That's not to say that I have not had a tremendous amount of support from a whole host of people, but these were some people that I felt we owed a special "thanks”.   In some ways, this was my coming-out party, in that, it was really my first large-scale, public appearance since the ALS Walk last November in Philadelphia, as well as my first public appearance in front of family and friends, using my power wheelchair (not my good power wheelchair mind you, I'm talking my $200 Craigslist special. I'll save my $20,000 wheels for special occasions). 

That's my new cigar smoking hat, bought specifically for this occasion 

I was not as nervous or hesitant in joining the party as I expected to be. I'm sure that had something to do with being surrounded by people I felt very comfortable with.  Of course, the beer didn't hurt either.  I had five beers that day (I only know that because someone else was doing the counting.  I lost count with my second one) and eight in total, over the three-day weekend. Those eight beers probably matched my previous two months total. In addition, I smoked my first ever cigar. What the hell do I have to lose at this point? I always thought I would look cool smoking a cigar and I was really getting tired of walking around with those pretzel rods in my mouth. I could also tell that most people there must have read my last blog post, especially the part about me needing to gain weight, since almost everyone came up to me, offering to get me some food and making sure that I had something to eat.

Overall, I had a pretty good time, and I'm pretty sure everyone else who attended, did so as well. Again, I can't even begin to put into words how much Tracey amazes me and how wonderful she truly is. From cleaning the house, to doing the shopping, to preparing the food, to cutting the lawn, and finally to setting up the outside and cleaning up afterwards, this barbecue never would've happened, if not for her. A big thank you too, to my brother-in-law Joe, who did all the cooking, my sister Cari who helped Tracey with the cleanup after, and to Yasser for my first cigar. Thank you to everyone who came, brought food and beer and wine and whatever, and helped me to continue celebrating Memorial Day, just as I always have.

Saturday, May 28, 2011

Post 26 - State of the Union

Since this promises to be a slow weekend, (happy Memorial Day weekend to all) I’ll try and slip this post in, since it is not shaping up to be a particularly uplifting one. Consider that your warning. It has been a while since I've given an update on my physical status. My own kind of "can and can't do" list. So without any further ado, here goes nothing.

The good news is that I'm still breathing and swallowing. My arms and legs are still taking the brunt of the disease. It almost feels like I am giving you battle coverage from the front, but I guess in some ways, this is a war. The atrophy in my muscles has become very apparent throughout my body. The most notable area, to me is my neck and shoulders, but it is very obvious in my arms, hands and legs as well. I attached some recent pictures at the bottom of the post, so you can judge for yourself. I estimate that I only have about 5% usage of my left arm and maybe even less of my left hand. There only two ways that I can move my left arm. The first is to swing it back and forth, and kind of fling it where I want it to go. The second way is to grab my left arm or hand with my right hand and move it to where I want it to go. My right arm and hand, although considerably better than my left side, is starting to falter as well. I estimate that I have less than 50% usage of my right arm and hand and I'm starting to fling at arm a little bit more now as well, in order to get it where I want it to go. I can still bend my arm at the elbow, but it is very difficult. I am unable to lift either arm anything more than a shoulder shrug.

My legs, which seemed to have held their strength a little longer, have now caught up to my arms. I am unable to walk without my leg braces more than 5 feet or so, and I can assure you it is not a pretty sight. I look a little like a drunk Frankenstein. Even with the braces on, the maximum distance I could walk, maybe is about 20 or 30 feet before becoming extremely fatigued. Even then, it must be on a flat, smooth surface with no impediments. Because of my leg weakness, I will almost always rely on using my walker. Without the walker I am very unsteady and unbalanced and a danger to fall with each step. The last time I went for an extended walk without my walker, was at work a little more than two weeks ago. I'd walked out of my office to see my secretary, and then decided to continue my walk around the office to stretch my legs. As I was beginning to take a step, the tip of my shoe caught the carpet, and down I went. In ALS terms, this is known as "foot drop," and is often the cause of many an ALS patient falls. Foot drop is basically the dropping of the forefoot due to weakness or paralysis of the muscles down the front of the lower leg. It is characterized by the inability or difficulty in moving the ankle and toes upward. Thankfully, I was able to break the fall with my head and ended up with a little egg above my right eye, in addition to a nasty case of rug burn. When I fell, I also had my right arm caught underneath me, which caused me to land on my elbow and temporarily knocked the wind out of me, in addition to bruising my elbow. I also banged up my left knee and ankle... yes, that same ankle. Luckily, there were only about a dozen people in the office at the time, instead of the usual 13 or 14, so it wasn't too embarrassing. This fall earned me a round-trip wheelchair ride to the nurses’ office. I tell you, everyone should be so lucky to work in a place that has a nurse's office.

Since this fall, I have been very tentative to attempt walking without my Walker. Even with the Walker, it feels as though both my strength and stamina have decreased significantly. I assume that this is both partly mental and physical since each fall does cause me to lose a little bit of confidence but also takes a physical toll on me. At the rate that I am progressing, I would estimate that I would almost be fully wheelchair-bound within the next three months.

There is some good news out of all of this. As I mentioned at the beginning, both my breathing and swallowing appeared to be normal, although I have begun to experience shortness of breath with almost all physical activity. Also, I believe I have detected some slight slurring of words, although nobody else has or will confirm that. Even though people may not be able to hear it, I know I am starting to struggle with saying certain words. It is therefore something I'll have to keep an eye on.

Over the past several years, my weight has remained somewhat consistent. Over the last six months, however, I have lost 11 pounds. That may not seem like a lot, but when you think about it, it has obviously not been through exercise. Weight has always been something my clinical team is concerned about, and they have always encouraged me to try and keep my weight up. A recent study of over 400 ALS patients conducted at Massachusetts General Hospital (MGH) found that those who were mildly obese survived longer than patients who were normal weight, underweight or even overweight. "We have long known that being underweight shortens survival for ALS patients, and several studies in an animal model have shown that weight gain is associated with increased survival," says Anne-Marie Wills, MD, MPH, of the MGH Neurology Clinical Trials Unit, senior author of the report. "Our study was designed to investigate how cholesterol levels affect survival. We were surprised to find that body mass index or BMI – a measure of weight adjusted for height – made a large difference in survival. Patients with a BMI of 30 to 35, who would be considered mildly clinically obese, lived the longest; and patients who were overweight, with a BMI of 25 to 30, lived the second longest." For better or for worse, my current BMI places me in the "overweight" category. I guess I have some eating to do. This is also why my clinical team at the University of Pennsylvania hospital has been urging me to quit my job for the last three years and just sit on my couch and eat potato chips and drink milkshakes.

My Functional Vital Capacity (FVC), which is a measure of my ability to breathe, was slightly down at my last clinic visit, although it was still well within normal range. According to my neurologist and the pulmonary specialist, the drop in score was insignificant. Insignificant to them, of course, because they don't have ALS. As my stomach muscles weaken, which is evident by the fact that I can no longer do certain things, it is expected that my breathing will become more difficult. Typically, the first sign of breathing distress usually occurs at night while you are laying down. Luckily for me, this has not been a problem and my FVC score while lying down is almost identical to my score in a seated position, which is unusual, even for a healthy person.

Several things that I am unable to do at this point, that I was able to do 3 to 6 months ago, includes: sitting up in bed, getting out of bed, getting up from a seated position, showering, getting dressed, brushing my teeth, shaving, drinking without a straw and driving. It has now been almost 6 weeks since I had last driven a car. Not that I still couldn't, but it would probably require me to expend a lot of physical energy to do so. Besides, I would be unable to get up out of the car without assistance, and even if I could, I would be so thoroughly exhausted, that I would probably take one or two steps and then be on the ground. Therefore, Tracey has been driving me to work every morning, and picking me up almost every afternoon. Several coworkers have graciously provided me with a ride home on occasion.

I can still hold a pen to scribble something that kind of looks like my signature, but I have to do this with my right hand. Other than that, I am unable to write. Typing on the computer is also extremely difficult. Oddly enough, I am unable to straighten my pinky, index finger and middle finger on my left hand, and they remain in an almost perpetual fist. My pointer finger, however, does what it's supposed to do, in that it points straight out. That finger, I am unable to bend. My thumb is similar to the first three fingers. On my right hand, I pretty much have full use and control of all my fingers, although they lack strength. Go try and figure that one out. After four years, things like this are still mind boggling to me.

Ironically, I am actually feeling very well today. Had I felt the same as I did today, three months ago or even a month ago, I would have told you that I was feeling very poor. I rarely notice a difference from day to day, and occasionally notice a difference week to week. However, I rarely feel as good as I do on any given day, than I did a few months ago. For the most part, I can say that more often than not, my spirits remain up.  As always, you can follow my status anytime by checking out my "PatientsLikeMe" profile on the right.  I typically update my status to coincide with my clinic visit to University of Pennsylvania.  My next scheduled visit is for July 21.


Trying to walk without my braces or Walker.
  
Dressed up for a night out on the town!



Tuesday, May 24, 2011

Post 25 - "Lucky Man"

I went to see the gypsy the other night, She looked in my palm looked me in the eye
Said you’re a lucky man

Some folks got fortunes some got eyes of blue, What you got will always see you through
You’re a lucky man

-Bruce Springsteen

 

Lou Gehrig (June 19, 1903 – June 2, 1941)

When Lou Gehrig gave his farewell speech, over 70 years ago, he began "Fans, for the past two weeks you have been reading about the bad break I got. Yet today I consider myself the luckiest man on the face of this earth.” Although I have always felt that I have many reasons to be thankful, (beautiful, healthy children, a wonderful wife, a great family, dedicated, supportive friends, and a good job, just to name a few) I've never had reason to consider myself lucky, especially over the past four years. In fact, as life began to get more difficult in the past few months, it appeared to me, that any luck I may have had was beginning to run out.

The last week was a tough week for me on many fronts. For starters, the constant rain was no big help. Cold weather appears to be my biggest enemy (I can assure you the hot weather is not any friendlier), which was is closely followed by wet, stormy weather. Last Tuesday, I returned to St. Lawrence Rehabilitation Center for my power wheelchair fitting and test drive. This process began over 4 months ago, when I first went for my initial assessment. At that time my walking was becoming more difficult, and I had experienced several falls. I finally agreed to go for the evaluation, after arguing with the occupational and physical therapists at U. Penn Hospital for over a year. When I first walked into the evaluation, the physical therapist looked at me, gritted his teeth and rolled his eyes. He took a deep breath, and went on to explain that he highly doubted that insurance would pay for my power chair, since I was still walking. I could not believe my ears. I finally show up to do this after a year of debates with my clinical team, and now the evaluator is telling me that it is probably a waste of time. Well, after 4 1/2 months and at least two additional requests from the insurance company to my doctor asking for additional information and justifications, the power wheelchair has finally arrived.


Permobil C300
MSRP: $40,000
 Insurance pays: $23,000
My co-pay: $4500

Not bad for a convertible
Most ALS patients that I've come across on various blogs, forums and websites speak of their power chairs as a saving grace. They talk about them fondly, and look forward to getting them. They talk of how much better their life will be when they get one. For me, this has been the day I have been dreading for over four years. When I walked into the therapy room room at St. Lawrence, and saw this brand, spanking new, shiny black chair, with blue trim (I got to pick the color when the chair was ordered last January. I was going to go with the NY Jets green, but they had just lost to the Steelers in the AFC championship game several days earlier , and I was still feeling a little bitter, so NY Rangers blue it was) I almost lost it. I became very down and depressed. Although I tried to put on a good show for Tracey, I think she knew. As I sat in the chair, and the therapist and a representative from the company began adjusting the arms, seat, backrest, etc. I did my best to remind myself that I was not going to let this get me down. In all honesty, I think I did a piss-poor job of trying to remain positive, but I did a much better job than I probably would have gone a couple years ago. I kept coming back to, what were all those people so damn happy about? Deep down, I knew the answers. It would provide me with a greater sense of freedom, allowing me to go more places. It would provide me a greater sense of independence, since I would no longer have to rely on somebody pushing me. And most importantly, it would provide me with a greater sense of security, since I would no longer have to worry about falling. I also knew it would take an additional weight off of Tracey's shoulders for all of those same reasons. Yet, I just did not want to accept it. To me, this was the beginning of the end. I kept trying to tell myself that the battle was not over, and I still had a long way to go. I fought hard to remain positive. I was able to take the chair for a little spin, and we discussed a few more adjustments. After about an hour, it was time to come home, and I still was not feeling any better about it. The chair was going to be delivered on Friday.
For the next few days I gave the chair little thought. When Friday rolled around, I actually began to get a little excited about the chair. All those positive reasons for having chair, which I thought about a few days ago, had started to sink in. My first real experience with the chair occurred this past Saturday. Tracey and I were traveling up to Edison, New Jersey for the Abilities Expo 11. The Abilities Expo is a three day convention, where companies are able to demonstrate their products and services for the disabled community. It was here that I became truly enlightened. As we walked (Tracey walked, I rolled) around the convention floor, I began to realize how lucky I was. I saw dozens and dozens of children in wheelchairs, some as young as two or three years old. All, with smiles on their faces. I saw adults, in their 20s, 40s, 60s and beyond in wheelchairs, some who were obviously in wheelchairs, all of their lives. I saw numerous parents and caregivers, pushing wheelchairs containing children with severe physical and mental disabilities. I felt luckier about myself as the day went on. We met up with our new friend Dana (the ramp lady from Great Adventure) and shared a lot of laughs. Here I am, sitting in a power wheelchair, something I was dreading since the day I received my diagnosis, and I was feeling lucky.

Lou Gehrig's ended his speech that day by stating, “So I close in saying that I may have had a bad break, but I have an awful lot to live for.” I finally have some idea what he was talking about.

Wednesday, May 18, 2011

Living with ALS: One Man's Story

Below is a copy of an online article that is in the latest issue of Men's Health.  If you substitute the word, girl for boy, left arm for right arm, and wife for mother, you will have a very detailed description of my experience with ALS.  I am roughly the same age as the subject in the article and have shared many of the same experiences, thoughts and emotions.  In fact, I see the same neurologist mentioned in the article, Dr. Elman, at the University of Pennsylvania. 

As you read through the article, I have highlighted areas that I have personally experienced to give you an idea of some of the things that I have dealt with.  For those of you that have been following my blog, you may notice some similarity in my initial reaction to diagnosis (Post 20 - Happy Birthversary).


Living with ALS: One Man's Story

http://www.menshealth.com/health/living-als

When a Man's Body FailsGary Temoyan is a young, fit father of two. A guy just like you, perhaps. Except his body is systematically shutting itself down. Temoyan is one of thousands of young men—soldiers, athletes, cops—who suffer from Lou Gehrig's disease. There is no known cause. There is no treatment. There is no cure. How do you explain that to two little boys?

By Bob DruryGary Temoyan soars above me, dropping from 13,000 feet. The red streaks on his tandem parachute stand out sharply against a bold blue sky. I glance at his parents, my eyes lingering for a moment on his mother. She's craning her neck, her eyes glistening. I've seen Joan Temoyan cry before, but not like this: These are tears of happiness. My gaze wanders next to Temoyan's two young sons, 9-year-old Joey and 6-year-old Tyler. Beaming at their dad's flight, at his momentary escape from his wheelchair. I think of what might have been—for all of them.

It all began rather innocuously for Gary Temoyan. The death sentence, that is.

A winter's day 3 years ago. He'd dismounted from his Highway Patrol motorcycle to write a speeding ticket. A twinge of numbness gripped his right thumb...as if the digit wouldn't cooperate, wouldn't hold the pen. He shook the hand, hard. Just the morning cold, he told himself. He gripped the pen tighter. Wrote the ticket. But still...

Temoyan was so proud of that motorcycle. It validated all the years of cramming for tests, of footing his own bill through the police academy. Afterward he'd applied to nearly every PD in southeast Pennsylvania, even a few across the river in Jersey. And when Lower Merion, at the rump end of the Philadelphia city line, finally called, there was pride in the Temoyan family. Gary was the first to choose a career in law enforcement. And it was all to mount that motorcycle. Even the years of community policing, of pedaling his mountain bike on patrol 10 miles a day, the joy of "going to work to work out," were merely steps toward the "real" bike patrol. When the day arrived, when Lower Merion had two Harley Davidson Road Kings to issue, he was beside himself. "Please-please-please let it be me," he prayed. It was.

He would continue to exercise and work out, of course. He was a buff 37-year-old, handsome in a Steve Carrell kind of way, with a strong Armenian nose and a thick head of wavy black hair, gelled just so. He continued to surf, fish, and wakeboard, to coach and play lacrosse, to ride dirt bikes with his sons. But as much as he enjoyed the rush of the mountain bike duty, the motorcycle patrol was his dream come true. And then it happened again. The thumb. The pen. The clipboard slipping out of his hand in the station house for no apparent reason. It happened until he couldn't ignore it any more. There was no pain, just weakness. Also, it seemed to be spreading through the rest of his right hand. And the twitching in his right arm. What was that?

He saw all the right doctors. The first, his regular physician, pegged it as a pinched nerve, perhaps from that motocross spill he'd taken a few months back while off-roading with Joey. But the doctor sent him to a hand specialist, who ordered an MRI and an electromyogram to measure the electrical impulses of his arm muscles. The tests found nothing unusual. His spine and neck were "perfect." Then, the dreaded words: "Maybe you should see another specialist."

He did. There were more tests. A hematologist did blood work. He had a full-body scan with barium; certain cancers can mimic the symptoms he was presenting, he was told. Temoyan thought about a couple of colleagues who'd battled the Big C. They were back on the job. Not so bad. There's hope. But the tests were negative; it was something else. He noticed the hematologist looking at him strangely as he recommended yet another doctor, a neurologist in Philadelphia. Temoyan stared back at the man and thought, He knows something.

By this time he had difficulty even holding a pen, much less his sidearm, in his right hand. His arm was twitching more often, too. And now there was something, well, off with his right foot. Sometimes it wouldn't cooperate when he told it to take a step. Told it to take a step? Who has to tell their feet to move? The Philadelphia neurologist ran more tests. A week later he called. "Gary, can you come down?"  He went alone. It was better that way. He and his wife were on the rocks again. The neurologist asked him to sit. Told him they'd reviewed the tests and ruled out Parkinson's disease and multiple sclerosis. That's good news, right?

"Tap your foot," the neurologist said.  He tapped his right foot, practically willing his toes to rise from the carpeted floor.  "Can I be frank with you?"  "Shit, absolutely." It was no time for subtleties.

"Have you ever heard of amyotrophic lateral sclerosis?"  Temoyan stared back, a blank expression.


"ALS? Lou Gehrig's disease?"


The walls closed in and Gary Temoyan's world went gray. The neurologist's voice seemed to issue from afar, as if the words were spoken under water: Quit your job. Get your affairs in order. Write a will. "Live what's left of your life the best you can..."

He was numb on the drive home from the downtown Philadelphia hospital. His doctor said 2 to 5 years. How long had it been since his thumb first twitched? How long did he have left? He tried to run the days, the weeks, the months, in his mind. But they were in a jumble. Joey and Tyler's faces floated before him. I'm not going to see them go on their first dates. Go to college. Start a family. His life, their futures, wiped away in a doctor's sentence.

He pulled his car over to the side of the highway. He grabbed the steering wheel with both hands and squeezed it so hard he thought it would crack. Then he wept. Wept and wept. Until, he thought, he had no more tears left. He was wrong.

Indulge me with a brief physical experiment. All you need is a second hand on a timepiece within your line of sight. Now prepare to put this magazine down and remain perfectly still for 90 seconds. Don't flex or twitch a single muscle in your body. Don't turn your head or wiggle a toe or scratch an itch or run your tongue over the roof of your mouth. Don't sniffle or swallow. You may breathe and you may blink. Ready? Go.

And there you have amyotrophic lateral sclerosis. Times infinity.

ALS is a progressive neurodegenerative affliction that, in the simplest terms, attacks and kills specific nerve cells and pathways in the brain and spinal cord. These cells, called motor neurons, are the longest ones in the human body, and carry messages from the brain and spine in order to control all the body's voluntary muscles. When these motor neurons degenerate and finally die in the rapid course of the disease, they take with them our ability to move. Forever.No one knows precisely why this happens; no one knows how to stop it. Roughly 10 percent of ALS sufferers appear to have inherited a triggering gene from a close relative; the other 90 percent of those diagnosed—15 people a day, 5,600 a year, with roughly 30,000 Americans afflicted at any given time with what is medically classified as "sporadic ALS"—run a racial, ethnic, and socioeconomic gamut. Like most diseases, ALS preys predominantly on older people; the average age of onset is 55 for both men and women.

Except, that is, in the case of fit young men—soldiers, athletes—men who, researchers have recently become alarmed to discover, are contracting it with more regularity. Fit young men like Gary Temoyan. It is still too early to account for the causes of this phenomenon, although many organizations and researchers, including the nonprofit ALS Association and various arms of the United States military, are racing to find answers. Do the multiple hits to the head that athletes receive spark an onset? The fertilizers spread over the fields they play on? The vaccines given to soldiers deploying overseas? We do not know. Yet, as one ALS clinician tells me, "Just from anecdotal experience, I think any physician dealing with ALS will tell you that there is some eerie predilection among young men who are physically fit to get this disease. As a general rule, young, male ALS patients tend to be leaner."

Joel Kupersmith, M.D., the chief research and development officer for the U.S. Veterans Administration, has noticed the same disturbing trend over the past two decades, since soldiers returning from the first Gulf War in 1991 began in clusters to display symptoms of the disease. The VA is recognized throughout the ALS community for its cutting-edge research, and it counts among its members approximately 1,000 sufferers, the largest registry of ALS patients anywhere. This allows the program to work with an extensive resource base. Dr. Kupersmith's medical teams are conducting experiments on mice found to possess a genetic defect similar to the human gene that triggers the disease in the 10 percent or people who contract familial ALS. VA scientists and researchers have completed a number of studies on the changes in biochemistry and physiology that may indicate the onset of sporadic ALS. "We hope that someday this will all lead to treatment and perhaps a cure," he says. "But unfortunately, that day is a long way off."

On the other hand, the VA has made great strides in experiments that have shown to ease the suffering of ALS victims—more on that later—but until someone comes up with the elusive cure, ALS victims must continue to live with the disease's cruelest irony. Patients in the late stages of ALS eventually, inevitably, experience total paralysis, with their eye muscles and sight the last to go. And yet—a spike-through-the-heart "yet"—in nearly all these cases the afflicted person's mind remains sharp and alert. This condition is referred to as "locked in"; sufferers are conscious and aware of their environment, but cannot interact with that environment in any way, as they are force-fed nutrients and oxygen into the shell of their inert flesh.

It's a few weeks before his jump, before he would cross skydiving off his personal bucket list, and Gary Temoyan is recalling his not-infrequent "Why me?" moments. How he lost 25 pounds because he would not eat; how his wife left him; how his depression nearly destroyed his relationship with his sons. "Sometimes I'm bad now, but I was a monster in the beginning," he says. "Mad, screaming all the time. I won't say the diagnosis caused the divorce—we were going downhill anyway. But it certainly hastened it. All I felt was the unfairness of it. I've led a healthy life. An athletic life. I eat well. I've got great kids, wonderful boys..."

At the mention of his sons, Temoyan's face crinkles. His eyes close and the part of his body that he still controls trembles as he sits in his motorized wheelchair. He covers his eyes with the good left hand, the hand he can still move, and takes a deep breath. The tears fall through his fingers.


Temoyan's right hand, as if made of rubber, droops off the arm of the wheelchair. I reach out and run my fingers over his index finger and thumb. It's warm to the touch.


"I can feel that," he says. "I just can't do anything about it."

The tears stop. It was with great effort, I can tell. "All the parts of my body that don't work, I can still feel. I can tell you that right now a fly is crawling across my left foot."


I look down, shoo the fly. He tries to smile. He offers to fetch me a beer. He doesn't need his mother for that. Joan and her husband, Armand Temoyan, a former Philadelphia rug merchant, have only this week moved back north from their Florida retirement home to live with Gary and the boys. To help with the cooking and the cleaning, to pull on Gary's socks and Velcro his sneakers, to zip his fly when his fingers fumble, to turn him in bed when he cramps. But Temoyan doesn't need his mother to fetch us a beer. He has installed ramps in his doorways, and he can do that himself. Still the tough cop. He lifts his right hand with his left arm, the only working limb he has left. "But for how long?" he says.

Now there are two cans of Coors Light before us, and Temoyan jerks his chin toward the involuntary muscle twitching in his left bicep. He has long since learned the technical name for the twitches. "Fasciculations." All humans experience these, which are usually so benign that they go unnoticed. An ALS sufferer's skin fairly jumps. "That's my motor neurons firing the nerve for some reason. They don't know why. It's coming up the left arm now." He lifts his full beer can. "If I pick this up I can feel it. I have that memory of what it was like, how it started, in the other arm. So I know this is coming. Hopefully slower this time."

There is no history of ALS in the Temoyan family. And though the disease's symptoms initially present themselves in one of the four neurological quadrants of the body—the bulbar segment for the head; the thoracic segment for the spine; the lumbosacral segment for the legs; or, as in Temoyan's case, the cervical segment for the arms—they all lead to the same conclusion. "Some people, such as Gary, are slow progressors," says his neurologist, Lauren Elman, M.D. "They plateau for a certain amount of time, but that plateau will not continue forever. You can make predictions about where the disease is likely to go, the most common patterns. But none of us can tell for sure what a patient is going to look like a week from now, a month from now. In the end, however, it is all ALS."Temoyan himself is all too aware of what he calls his own roller-coaster ride. "Am I on the upslope right now?" he says. With great exertion he shows me how he can use his left arm as a lever to help him wobble on his withered legs for a few seconds. "Or am I just going steady?" He sits back down, his exhaustion palpable. "Or is the big drop right around the corner? There's never been a documented case of ALS stopping, much less going into remission," he says.

Temoyan has written his will, but contrary to his original neurologist's recommendation, he did not quit the Lower Merion police department right away. He trained himself to fire his gun with his left hand in order to pass his annual firearms test, and he threw himself into the desk job his superiors provided. He refinanced his home to pay off his wife's share when she moved out, and gained back the weight, all 25 pounds, with burgers, milkshakes, and cheesecake. He knew that the weaker he became, the sooner he would die. As the disease spread to his legs, he learned to walk with a cane. He showed up at the station house 5 days a week that first year, then 3, then 2, and now, today, he tells me next Wednesday will be his last shift. "I stopped carrying my gun—I didn't want to hurt anyone. But when it comes to the point of having to ask other cops to help me into the toilet stall, it's time to get out," he says. "Plus, I want to use what energy I have left to spend with my kids."

If there is one positive Temoyan has taken from his affliction, it is a reaffirmation of human kindness. "As a cop, you become jaded," he says. "People lied to me on a daily basis. You ask them the time of day, they lie to you." No more, he says. He recalls the fundraisers held for him by various community organizations and police associations to build assets in the "Special Needs Trust" his older brother administers. It is that money that helped fund the ramps in his house, his wheelchair, and the small lift that rises to his second-floor bedroom. He speaks of the childhood friends who have reappeared in his life to proffer all manner of assistance. He mentions the woman, a complete stranger, who called one day to offer a donation—her late husband's specially equipped van, worth close to six figures. He'd died of ALS, she said.

Then our conversation segues to the "wonderful" Dr. Elman, who works out of Philadelphia's University of Pennsylvania Hospital, home to one of the most renowned ALS clinics in the country. Before he met Dr. Elman, he says, he felt he was being not so much treated as managed—"Diagnose and adios," in the medical shorthand. But the University of Pennsylvania hospital clinic is an experiment in multidisciplinary care, designed to address a myriad of physical, emotional, and real-life practical needs. It has mental-health experts, physical therapists, dietitians, speech and language specialists, pulmonary doctors, and social workers. Its goal, in Dr. Elman's words, "is to postpone the process of dying in order to continue the process of living."

Temoyan's most recent visit to the clinic was the first time he was unable to walk into the hospital on his own two feet. "That was hard," he says. "That was why my parents moved back. I've been cooking for the boys, actually teaching Joey to cook for himself. But, jeez, he's only 9 years old. It's good that he can go back to being a kid again. Plus, I'm finding..."—he stares for a moment at his lifeless legs—"I'm finding that I'm going to need a lot more help doing things."

Temoyan's voice trails off and he is silent for several moments. I bring up the BMW I noticed parked in his garage, a gleaming, black 2009 convertible he purchased last spring. His face brightens. "Part of my bucket list," he says. Like the deep-sea fishing trip he took to the Caribbean with his sons and his best friend; like the snowmobiling trip outside Aspen. Like the skydiving adventure he had just begun planning. His thoughts return to a recurring theme. "I used to be the fixer, the man in charge. Now I can't even lift an arm to put on deodorant. I wear a hat all the time because I can't comb my hair. I wear elastic-belted pants. I'm 40 years old, and I have to have my parents move back in with me."

He wheels across the deck and up the ramp to fetch us two more cans of beer. His good shoulder is visibly slumped.

I'm not going to lie to you," Dr. Elman says. "Right now the best we can do is look for the little, incremental clues to this disease, clues that probably won't help people now suffering from ALS."

This is a new experience for me. I've written about Parkinson's, cancer, all manner of post-traumatic stress disorders, heinous battlefield wounds, and traumatic brain injuries. In each of these stories doctors always held out a hope, however thin or distant, for a treatment, if not a recovery or cure. Not so with amyotrophic lateral sclerosis.

Lucie Bruijn, Ph.D., chief scientist for the ALS Association, describes the global effort to combat the disease among researchers in gene therapy, stem-cell biology, and genetics. The journal Nature reported in August 2010 on the discovery of a protein produced by the human body that may act as a deterrent to another protein believed to have a critical role in the spread of ALS. The italics are mine; the scientific literature on ALS is filled with such hesitant modifiers. "The breakthroughs that excite us won't lead to a treatment tomorrow," Bruijn says.

ALS research advocates also chafe at the disease's "orphan" status. As Bruijn explains it, patients contract ALS at nearly the same rate as other neurodegenerative disorders, but they die so much more quickly that pharmaceutical companies sense only a minor market for potential drugs. The only FDA-approved drug to treat ALS—riluzole (brand name Rilutek), an amino acid blocker—scarcely delays its progression. "The unfortunate truth about this drug," Dr. Elman tells me, "is that in clinical trials the margin of effectiveness was that it slowed time to death, or time to permanent ventilator support, by about 3 months."However, because of the clusters of soldiers returning home from the first Gulf War with ALS symptoms, there is some hope for patients enduring those "wasting" months. I recently viewed videos of paralyzed patients controlling computers and wheelchairs solely with their thoughts. The still-experimental technology, called Braingate, a collaborative venture between the VA and medical researchers at Brown University, involves implanting a baby aspirin–size electrode into a patient's lower cortex so that it detects brain waves and sends a signal to the motor neurons. Naturally, this process alone will not work in ALS sufferers whose motor neurons have ceased to function. But when this technology is combined with another process involving implanted wires in the body that serve a similar, impulse-transmitting function to motor neurons, locked-in patients have even been able to move previously paralyzed limbs.

The VA has already begun experiments with ALS patients. "It is called proof of concept, and it is the closest we've come to helping people with ALS," Dr. Kupersmith notes. "It's not a cure for the disease, but I think it will help a lot of people stricken by it."

But this help, he admits, is still some ways off, which leads me to thoughts of Temoyan's family, especially his mother, praying for a cure but recognizing that one day her son will be locked in. He won't be able to tell her where she might soothe an ache, where she might scratch an itch. She'll peek her head into his bedroom in the middle of the night to listen for his breathing, wondering if his lungs have stopped working.

It is a horrifying future, one few diseases can match. Facing this, ALS patients tend to shut down and draw a thick curtain between themselves and the outside world. But not Temoyan, which Elman admits surprises her. "He's the kind of guy you wouldn't think would be able to handle this. Macho guy, with a macho job. He was all about his motorcycles and his gun, and when one by one these things are taken away, well, just looking at it on the surface you don't necessarily anticipate that most people will rise to the challenge as well as Gary has. He has really chosen to fight this disease. Just the fact that was able to walk for 2½ years after diagnosis, well, that in itself is extremely rare."

All serious diseases are hell on the sufferer's family. But ALS, with its certainty of permanent cognitive imprisonment, is particularly invidious. Joan Temoyan, in fact, had previously voiced her dismay to me that Gary had not yet sat down with his sons to explain what was truly happening to him—that he is dying. Joey and Tyler have attended ALS events with their father, including Phillies games. "They know Daddy's sick," Temoyan says, "that he has a disease that affects his arms and legs, that something's happening to Daddy's body."

The message he prefers to convey is, I still love you, and I'm going to be here. That "here," however, is becoming harder to maintain. By the time I meet Temoyan, roughhousing with the boys has already become a thing of the past, and even his occasional forays into their street hockey games—he and his wheelchair make a formidable goalie—last only a few moments before he is panting from exhaustion. "I don't want to upset them," he says. "I hope and pray for a cure in my lifetime, but I'm not stupid. I can see myself turning worse. Death is so hard for a young child to comprehend. But I also know I can't wait until the point where I can't speak anymore."

So on one unseasonably cold Friday night in October—2 months after Temoyan swooped to the ground in a parachute; 2 months after his mother again expressed to me her sadness that Gary had not yet spoken to the boys about his future—Temoyan, his ex-wife Layne, and their sons gathered in the living room of his home. A few days earlier the psychological therapist at the hospital had provided Gary and Layne with a list of questions that would help the boys open up about their father's deteriorating condition. Why do you think Grandma and Grandpa moved back here? Why do you think Daddy needs so much help doing normal things? Gary glanced at the list often as his ex-wife steered the conversation. "The key was to have them engage us," Temoyan tells me the next morning. "To get them to ask the questions. Layne was good at that. She was on the floor, curled up with Joey. Tyler sat on the couch next to me. It was hard, really hard. I was afraid I would break down."

Layne and Gary went through the process with their boys. Remember when Daddy limped? Then Daddy needed a cane? And now the wheelchair? Well, Daddy has something called ALS, and we want to explain to you what that is.

They told the boys that Daddy would be getting worse, and Gary joked that there would probably come a time when Joey might have to feed him, "the way I fed you for all those years." Then they told the boys that despite the scientists and doctors all over the world working to beat this disease, right now there was no cure. Nine-year-old Joey knew what that meant, but Tyler, just 6, was a little unsure. When Layne and Gary explained further—"that's why you see Daddy getting weaker"—Tyler began to cry. And Gary and Joey began to cry. Tyler left the room and returned with his two favorite stuffed animals. He placed them on his father's lap. "We hugged, and cried a little bit more. I told them how much their mother and father loved them, and I promised them that I would never lie to them, that I would tell them when I felt, when the doctors felt, that I was getting worse. They seemed to accept that. And, I swear, I feel like there was a 1,000-pound gorilla lifted from my shoulders. I think my sons felt the same way."
And when it was over, after they had all shed their final tears, Layne went home. Joey microwaved popcorn, Tyler put in a DVD, and the three Temoyan men settled in on the couch. Together they watched Cloudy with a Chance of Meatballs.

"Best damn movie I ever saw," says Gary Temoyan.