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, August 22, 2010

Post 12 - ALS In One Word

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

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

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

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

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

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

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

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

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

Monday, August 16, 2010

Post 11 - Taking the Good with the Bad

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

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

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

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

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

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

Thursday, August 12, 2010

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

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

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

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

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

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

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

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

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

Monday, August 2, 2010

Post 9 - Anniversary Song

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

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

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

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

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

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

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

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

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