Some facts you should know about ALS. ALS involves muscle weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control speech, swallowing and later breathing. Approximately 5,600 people in the U.S. are diagnosed with ALS each year. It is estimated that as many as 30,000 Americans may have the disease at any given time. The life expectancy of an ALS patient averages about two to five years from the time of diagnosis. There is no CURE!
About Me
- DarinM
- For those of you that don't know, I was diagnosed with ALS in March 2007. After two more opinions, the diagnosis was confirmed in the fall 2007 at age 39. This coming August (2010) I will have been married for seven years to an incredible wife, who has supported me throughout. During the course of our marriage we have been lucky to have two wonderful, amazing daughters. Sydney, will be 5 in November. Emily, will turn 2 1/2 in August. Currently, we reside in New Jersey with our Beagle, Trixie.
Friday, August 27, 2010
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!
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:
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.
- 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
- Guaranteed, preferred parking almost everywhere I go
- I am encouraged to drink red wine
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
- Sleeping 10 or more hours a day is considered normal and encouraged by my doctor
- My doctor's suggested course of treatment is to sit on the couch, eat potato chips, and watch TV
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
- 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.
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| On LBI |
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.
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| 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.
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| Fantasy Island on LBI |
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.
Wednesday, August 4, 2010
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)
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.
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| Anniversary Song Have you ever seen a sight as beautiful as that of the rain-soaked purple of the white birch in spring? Have you ever felt more fresh or wonderfu than on a warm fall night under a Mackerel sky, the smell of grapes on the wind? Well I have known all these things and the joys that they can bring And I'll share them all for a cup of coffee and to wear your ring Have you ever had the pleasure of watching a quiet winter's snow slowly gathering like simple moments adding up? Have you ever satisfied a gut feeling to follow a dry dirt road that's beckoning you to the heart of a shimmering summer's day? Well I have known all these things and the joys that they can bring And I'll share them all for a cup of coffee and to wear your ring And I don't know how I survived those days before I held your hand Well I never thought that I would be the one to admit that the moon and the sun shine so much more brighter when seen through two pairs of eyes than when seen through just one. Have you ever seen a sight as beautiful as a face in a crowd of people that lights up just for you? Have you ever felt more fresh or wonderful as when you wake by the side of that boy or girl who has pledged their love to you? Well I have known all these things and the joys that they can bring And now every morning there's a cup of coffee and I wear your ring. |
The story that I am about to tell you now is a true story that I've never told anyone before, not even Tracey. In January of 2002 I had surgery on my sinuses. Following the surgery I had experienced complications and twice had to go to the emergency room due to excessive nosebleeds. On one occasion, I had lost so much blood, that I needed to spend the night in the hospital. I had returned to my doctor's office during my third nosebleed since it was very close to where I was working at the time. After he was unsuccessful in getting the bleeding to stop he sent me directly to the hospital for emergency surgery, which finally did the trick. All in all, from the time of my first surgery to the emergency surgery, for a period of about one month, Tracey stood by my side and took care of me. She cooked, she cleaned, and she nursed me back to health. She did everything she could to see that I was comfortable and taken care of. It was during this point in time (hold on for an ironic twist of fate) that I realized that if anything should ever happened to me this was somebody that was going to stay with me and take care of me, unconditionally. Finally, I was smart enough to know that I could not risk losing someone like that. We were engaged five months later.
I had planned to get engaged in Mystic, Connecticut, following a six-day camping trip to Provincetown, Massachusetts. This trip already had special significance for Tracey since I had already gone to Provincetown several times with other lady friends and she was the first to ever accompany me a second time. The fact that I was able to get her to go with me a second time should have been reason enough for me to propose. If at that time Tracey did not know what a jerk she was about to marry, she was soon going to find out. Within 10 minutes of being engaged I had joked with Tracey that since I had just proven how faithfully committed I was to her for the rest of my life, that I should now be allowed to date. She replied with a simple "no ". Since Tracey and I had known each other for approximately 6 years and had dated for three of those years, she was no stranger to my odd, ill-timed, sometimes dark, self-deprecating, sense of humor. Now I think, that at the time, she was just realizing that there was no moment sacred enough for me not to make a joke.
Some other previously embarrassing moments for others prevents me from talking about several other times I had made ill-timed, and/or inappropriate jokes. For me, that has always been the preferred way of lightening the mood for an uncomfortable situation. Additionally, I've never had a problem making a joke at my expense.
For those of you that do not know how great Tracey is for actually putting up me, I am about to tell you. It's hard enough for someone to go through what she is currently going through without having some jerk make jokes all the time, but unfortunately that's who I am. Take for instance, the time were watching TV and a commercial came on for one of those Internet dating services, who was offering a free weekend. Nonchalantly, I turned to Tracey and suggested that we should sign her up. When she looked at me puzzled and asked why, I stated that I thought it was only right that I should have a say about my children's next father. It took Tracey all of about 5 seconds to fully comprehend what I just said, before she burst out in tears. In my effort to cheer her up, I reminded her about the free weekend the Internet dating service was offering and how it was not going to cost us anything. Yeah, I know, I'm a jerk. There was also the time that we had gone to a funeral home for a viewing. After standing there for about five minutes I commented to Tracey about how I thought the funeral home was a very nice and tasteful place. She agreed. I then asked her if we should pick up some brochures so she would not have to wait until the last minute. Yeah, I know, I'm a jerk. I remember watching the news with Tracey around the time of Michael Jackson's funeral and all of the hoopla surrounding it. After hearing about all the celebrities and people from around the world who are attending the funeral I suggested to Tracey that I wanted to make a guest list for my funeral because, after all, I didn't want "just anybody coming to my funeral, especially if they're just using it as an excuse to get out of work." By this time, Tracey learned to just ignore me. However, there was one more time that I did upset her. Several months ago, we were doing our spring cleaning, and I wanted to clean out my closet. I had decided to get rid of all but one or two of my button-down shirts, since it had been well over a year and a half since I was able to button them, and get rid of all my ties, since it had been two years since I had been able to tie a tie. Tracey, for ever remaining the ultimate optimist, voiced her objections under the opinion that they were perfectly good shirts and ties, and that someday soon, I would be able to wear them again. As she left the room she told me that she did not want me to get rid of all my ties. My response - "I'm not getting rid of all my ties, I'm keeping one for the funeral". Almost instantaneously I heard the crying. My attempt at consoling her - "you know I'm only joking... I want to be cremated". Yes I know, I'm a big jerk! Even now, when I read back over all that I just wrote, I can't help but laugh. Yes I know, I'm a really big jerk!
These are just some of the examples of the ways I have nearly driven Tracey crazy over the past several years. Tracey definitely deserves better, I agree. I told her this before we started dating, before we got engaged, before we got married and I continue to tell her this almost everyday. Thankfully, she has refused, and continues to refuse, to pay attention to me and has learned to listen to me when it counts, like now. HAPPY ANNIVERSARY, Tracey! I Love You, Always.
Friday, July 30, 2010
Post 8 - George, ...I mean Darin, is getting upset!
Did you ever go someplace that you didn't want to go to, but you knew you would end up there anyway, but you do way sooner than expected? This happened to me yesterday. After helping Tracey, pack up the car for our trip down to LBI, and by helping, I mean sitting on my ass most of the time. I did carry out two or three of the smallest bags we had and I did supervise Tracey loading the car, but other than that, I can't say I did too much. Still, I was completely exhausted by the time that we left.
Actually, I did help out a little bit more than that. I did help with packing up some of the lighter things around the house, unplugging most of our electrical equipment, such as TVs, computer, etc., and gathered up some of the little knickknacks like vitamins and cell phone chargers, and things of that sort. Needless to say, I was on my feet a lot. Like I have said previously, I do not wear my leg braces around the house. So there was some reason for my fatigue. Our original plan was to leave around 10:30 AM. It was about 1:30 PM when we left our driveway. It was a sunny, hot, humid day when we left. By the time we hit LBI it was a torrential downpour with virtually no visibility. By the time we got to the house and we unloaded the car (of course when I say “we” I mean, Tracey) the downpour had turned into one of those light refreshing summer rains. We had planned to go out Friday morning to do the additional shopping that we would require for the rest of the week. But seeing how the weather was not cooperating and the forecast for Friday was looking good (which they were correct by the way, it is beautiful down here today), I suggested that we head back to the mainland and do our shopping so we would not have to worry about it on Friday. That suggestion was only a minor mistake, compared to the bigger one I was about to make.
Since I had not worn my leg braces for the ride down to the shore I briefly contemplated putting my shoes on, so I would be able to wear my braces while we were out shopping. I guess you can figure out what I ultimately decided. Our first stop was BJ's warehouse to pick up the bulk essentials a family of four needs for a week. Although I had some concerns about how I would make out we did not have much to get, and as long as I was pushing a shopping cart I thought I would be okay. For the most part, I was. When we got back to the car I was feeling a little wobbly in my legs. ShopRite was next on our list. By the time we got the kids out of the car and got to the front of the store were the shopping carts were located, I was pretty much done. That's when it happened. When I got to the place where I knew I was headed, didn't want to go to and certainly didn't expect to get there this soon. At the front entrance of the store was a line of motorized scooters. I had three choices. First, I could go back out to the car and sit and wait while Tracey did a week’s worth of food shopping, with the two girls. Second, I could try and tough it out, using the shopping cart to help balance myself, and get the seven or eight things Tracey asked me to pick up, or I could suck it up, swallow my pride, bury my self-consciousness, and park my ass on the scooter. I entered the world of George Costanza (for those of you not familiar with Seinfeld, you may want to consult with a Seinfeld watcher to get the reference) and chose option number three. At first, I felt like an idiot because I did know how to drive the thing. It was very reminiscent of the first time I tried to drive a stick. After a few minutes, I quickly got the hang of it. The self-conscious thing, however, did not totally disappear. First, whether real or imagined, it seemed as though a lot of people were looking at me and in my mind thinking, why is this guy riding around on the scooter, he looks perfectly fine to me. After all, people are always telling me, either how good I look, or that they couldn't tell I have ALS or something to that effect. It got to the point, where I'm sad to say, when I had to get up from the scooter to get an item from a shelf, I kind of over embellished my weakness to make it obvious to anyone who may be watching me that I did in fact have a physically disabling condition. Talk about pathetic. Like it was anyone else’s business as to why I was using the scooter. Besides the perceived stares (and in an attempt to remain objective, I do believe that only some of them were real), I also want to point out how many complete a-holes were in the store yesterday afternoon. Some people were compelled to walk down the middle of the aisle; other people would just leave their carts in the middle of the aisle and walk away, while some people just stood still talking on their cell phone. Now I have been shopping before, and I know that this is often a frequent occurrence, but here's why I think things were different this time. Previously, at least for me, in all those situations, I was able to either make eye contact with the person so they would get out of my way, try and maneuver around them, gently nudging their cart if I needed to, or would just simply say “excuse me.” That always seemed to work when I was a 6'2" man pushing a shopping cart. It didn't seem to work so well when I was a 3 1/2 foot tall man riding a scooter. Additionally, a fair share of people either saw me coming down the aisle or looked right at me, and still made no attempt to move their cart or get out of the way. I have to admit that on more than one occasion, I came close to showing some people that I was still able to get out of the scooter and was still more than capable of knocking them down! In fact, at one point, I did play bumper cars with someone else's cart, and in true George Costanza fashion, kept on trucking without looking back. I have been told that shopping cart rage does exist, and now I can add one more diagnosis to my repertoire.
The second line I crossed yesterday was in asking people for help. As I have also stated in the past, asking for help is never been an easy thing for me to do, and that is with people that I know very well and trust. I guess, since I was already driving the scooter, I figured what the hell. Now the scooter is all fine and dandy for getting around but when you still have issues with your arms and hands it makes it all but impossible to reach half the items on store shelves. Thankfully, as I mentioned above, I was able to get in and out of the chair to retrieve the items I needed. This was true for all but one item, the bananas. Because of where the bananas were placed they were totally out of my reach and I had to ask a store clerk for assistance. But I was not done yet. I was also in charge of finding a dinner for the night. Ever since Tracey and I started coming down to LBI about 10 years ago we've always had this kind of tradition on the way down to the house. We would stop and pick up a pizza, some wings and some beer and sit out on the deck and have dinner. Since the kids, the tradition has kind of gone by the wayside, but whenever possible, we try and relive the moment. Last night, I thought it would be nice if I got some wings to have with dinner, problem was that I did not have the hand strength to squeeze the tongue's to grab the wings from the wing bar. Again, I had to ask for assistance.
Looking back on my scooter experience, as well as my assistance asking experience, I have to say that I'm not quite sure what to say. I feel very conflicted. One second I'm telling myself “this is all a pretty big deal. I'm slowly but surely losing my independence.” The next second I am telling myself “it's no big deal. I was able to accomplish what I wanted to accomplish and that is the important thing.” In some respects, I guess I am lucky in the sense that I have now crossed that threshold. I can better prepare myself psychologically and emotionally since I am no longer a stranger to the ideas of assistance, both mechanically and physically. I am sure I'll adjust, in time. Just like I adjusted to receiving the news of the original diagnosis, adjusted to not being able to write, button a shirt, or tie my shoes, and adjusted to wearing leg braces. For all of those scenarios, the adjustment was easier than I expected, but still tough to handle and to accept. Besides, if riding a scooter and asking strangers for help, is what's necessary to spend a week at the shore with Tracey, Sydney and Emily, then I'm all for it.
One last note. I officially began my vodka tonic trial (Refer to Post 4 from July 14, 2010) this afternoon on the deck and continued the experiment through dinner. So far, nothing significant to report. Tomorrow night, Tracey and I have plans for dinner. I plan on continuing the experiment with gin tomorrow. I promise to report out on my findings.
 |
My view and inspiration for today's blogging and drinking. |
Since I had not worn my leg braces for the ride down to the shore I briefly contemplated putting my shoes on, so I would be able to wear my braces while we were out shopping. I guess you can figure out what I ultimately decided. Our first stop was BJ's warehouse to pick up the bulk essentials a family of four needs for a week. Although I had some concerns about how I would make out we did not have much to get, and as long as I was pushing a shopping cart I thought I would be okay. For the most part, I was. When we got back to the car I was feeling a little wobbly in my legs. ShopRite was next on our list. By the time we got the kids out of the car and got to the front of the store were the shopping carts were located, I was pretty much done. That's when it happened. When I got to the place where I knew I was headed, didn't want to go to and certainly didn't expect to get there this soon. At the front entrance of the store was a line of motorized scooters. I had three choices. First, I could go back out to the car and sit and wait while Tracey did a week’s worth of food shopping, with the two girls. Second, I could try and tough it out, using the shopping cart to help balance myself, and get the seven or eight things Tracey asked me to pick up, or I could suck it up, swallow my pride, bury my self-consciousness, and park my ass on the scooter. I entered the world of George Costanza (for those of you not familiar with Seinfeld, you may want to consult with a Seinfeld watcher to get the reference) and chose option number three. At first, I felt like an idiot because I did know how to drive the thing. It was very reminiscent of the first time I tried to drive a stick. After a few minutes, I quickly got the hang of it. The self-conscious thing, however, did not totally disappear. First, whether real or imagined, it seemed as though a lot of people were looking at me and in my mind thinking, why is this guy riding around on the scooter, he looks perfectly fine to me. After all, people are always telling me, either how good I look, or that they couldn't tell I have ALS or something to that effect. It got to the point, where I'm sad to say, when I had to get up from the scooter to get an item from a shelf, I kind of over embellished my weakness to make it obvious to anyone who may be watching me that I did in fact have a physically disabling condition. Talk about pathetic. Like it was anyone else’s business as to why I was using the scooter. Besides the perceived stares (and in an attempt to remain objective, I do believe that only some of them were real), I also want to point out how many complete a-holes were in the store yesterday afternoon. Some people were compelled to walk down the middle of the aisle; other people would just leave their carts in the middle of the aisle and walk away, while some people just stood still talking on their cell phone. Now I have been shopping before, and I know that this is often a frequent occurrence, but here's why I think things were different this time. Previously, at least for me, in all those situations, I was able to either make eye contact with the person so they would get out of my way, try and maneuver around them, gently nudging their cart if I needed to, or would just simply say “excuse me.” That always seemed to work when I was a 6'2" man pushing a shopping cart. It didn't seem to work so well when I was a 3 1/2 foot tall man riding a scooter. Additionally, a fair share of people either saw me coming down the aisle or looked right at me, and still made no attempt to move their cart or get out of the way. I have to admit that on more than one occasion, I came close to showing some people that I was still able to get out of the scooter and was still more than capable of knocking them down! In fact, at one point, I did play bumper cars with someone else's cart, and in true George Costanza fashion, kept on trucking without looking back. I have been told that shopping cart rage does exist, and now I can add one more diagnosis to my repertoire.
The second line I crossed yesterday was in asking people for help. As I have also stated in the past, asking for help is never been an easy thing for me to do, and that is with people that I know very well and trust. I guess, since I was already driving the scooter, I figured what the hell. Now the scooter is all fine and dandy for getting around but when you still have issues with your arms and hands it makes it all but impossible to reach half the items on store shelves. Thankfully, as I mentioned above, I was able to get in and out of the chair to retrieve the items I needed. This was true for all but one item, the bananas. Because of where the bananas were placed they were totally out of my reach and I had to ask a store clerk for assistance. But I was not done yet. I was also in charge of finding a dinner for the night. Ever since Tracey and I started coming down to LBI about 10 years ago we've always had this kind of tradition on the way down to the house. We would stop and pick up a pizza, some wings and some beer and sit out on the deck and have dinner. Since the kids, the tradition has kind of gone by the wayside, but whenever possible, we try and relive the moment. Last night, I thought it would be nice if I got some wings to have with dinner, problem was that I did not have the hand strength to squeeze the tongue's to grab the wings from the wing bar. Again, I had to ask for assistance.
Looking back on my scooter experience, as well as my assistance asking experience, I have to say that I'm not quite sure what to say. I feel very conflicted. One second I'm telling myself “this is all a pretty big deal. I'm slowly but surely losing my independence.” The next second I am telling myself “it's no big deal. I was able to accomplish what I wanted to accomplish and that is the important thing.” In some respects, I guess I am lucky in the sense that I have now crossed that threshold. I can better prepare myself psychologically and emotionally since I am no longer a stranger to the ideas of assistance, both mechanically and physically. I am sure I'll adjust, in time. Just like I adjusted to receiving the news of the original diagnosis, adjusted to not being able to write, button a shirt, or tie my shoes, and adjusted to wearing leg braces. For all of those scenarios, the adjustment was easier than I expected, but still tough to handle and to accept. Besides, if riding a scooter and asking strangers for help, is what's necessary to spend a week at the shore with Tracey, Sydney and Emily, then I'm all for it.
One last note. I officially began my vodka tonic trial (Refer to Post 4 from July 14, 2010) this afternoon on the deck and continued the experiment through dinner. So far, nothing significant to report. Tomorrow night, Tracey and I have plans for dinner. I plan on continuing the experiment with gin tomorrow. I promise to report out on my findings.
Thursday, July 29, 2010
Post 7 - Looking A Little Thin
First some exciting news. For those of you that do not know yet, we have officially launched our walk for a cure campaign. Our team, the ALS Wing Fighters, will be walking in the greater Philadelphia ALS walk on November 6 at Citizens Bank Park (home of the Phillies) in Philadelphia. Please check out the invitation video that I posted to the blog on Monday, July 26. Also, please consider joining our team and walking with us to raise awareness (and funds, of course) and support for ALS patients and their families. You can join our team, make a donation, or both by clicking on the following link: Philadelphia walk-ALS Wing Fighters. Thanks for your support.
As I talked about above, the ALS walk is only a little more than three months away. I am actually very excited to be participating. It feels good to know I'm trying to do something to help myself and others with ALS. I am particularly excited about the video, inviting you all to join us. I wanted to thank Larry and Christine for putting the final touches on it and getting it up on YouTube.
One question I am frequently asked is "how are you doing?” As I've stated previously, it is not always an easy question for me to answer. I'm hesitant to say "great “because I'm not. I'm also hesitant to say "I feel like crap" because I am making a conscious effort to not be negative. If you were to see me walk or try and maneuver my arms you would know that something was wrong for sure. It wasn't until recently, when I saw a picture of myself, did I realize how noticeable the muscle atrophy in my arms had become. My legs look only slightly better. In my opinion, I'm beginning to look a little like a stick man. I've attached a picture at the end of this post so you can make your own conclusion. Often, as most of you know, my simple answer to the question, how am I doing, is "okay", and except for a few people, I will rarely go into detail. For the rest of you, today's your lucky day because I'm going to give you some insight as to how I feel and show you how you can check anytime you want.
On the upper right-hand column of this blog page there is a tab titled "How Am I Doing ". Underneath that tab is a banner for a website called Patients like Me. This website allows people, who have been diagnosed with life-changing diseases, to share information regarding their condition with other patients who share similar illnesses. The website allows you to chart your condition, symptoms, and treatments as well as provide a forum for discussion with other patients, caregivers and medical professionals. I have gained more useful information from this website in one visit then I have from all of my doctor visits, combined. By clicking on the Patients like Me banner, you will be taken to my profile page. One of the first things you will notice is a picture of Sydney and Emily sitting next to a hot mermaid. Next to the mermaid you'll see a little multicolored man. This little man is a quick indicator of my disease progression. Progression is measured in four separate areas, the head, the chest, the arms, and legs. The color green indicates no disease progression. Yellow indicates minimum disease progression. Orange indicates moderate disease progression and red indicates severe disease progression.
Underneath the little man, you'll notice several charts. The top chart represents my FRS score. FRS stands for Functional Rating Scale. The ALS Functional Rating helps you keep track of your overall condition by measuring symptoms in the four areas I talked about above. There are three questions for each area: bulbar (chewing and swallowing muscles), activities of daily living (arms), mobility (legs), and breathing. The highest rating, one can receive is a 48. Currently, my rating is a 35. You can follow the progression of my score over the past three years by rolling your cursor over the points plotted on the chart. Your FRS score is determined by a self rating scale in 12 different areas of functionality.
The specific questions asked, and my current level of functioning, is as follows:
Speech (bulbar) - Speech is about more than how your voice sounds. It's how well you feel forming words in your mouth.
Underneath the FRS scale is my FVC chart. FVC stands for Forced Vital Capacity and is a measurement of lung strength. It measures my ability to breathe independently. As you can see, my score is 88%, which I am told is in the normal range for a man of my age in good health.
Further on down the page you can find a list of my treatments, which includes all prescription drugs, vitamins and supplements, and any other therapies or treatments, I have taken or are currently taking. Additionally, there is a list of the specific symptoms that I am experiencing. You can read those for yourself if you would like. As with above, green indicates no symptoms, yellow indicates a mild symptom; orange indicates a moderate symptom and red indicates a severe symptom.
Here's the picture that I talked about earlier. Let me know what you think.
As I talked about above, the ALS walk is only a little more than three months away. I am actually very excited to be participating. It feels good to know I'm trying to do something to help myself and others with ALS. I am particularly excited about the video, inviting you all to join us. I wanted to thank Larry and Christine for putting the final touches on it and getting it up on YouTube.
One question I am frequently asked is "how are you doing?” As I've stated previously, it is not always an easy question for me to answer. I'm hesitant to say "great “because I'm not. I'm also hesitant to say "I feel like crap" because I am making a conscious effort to not be negative. If you were to see me walk or try and maneuver my arms you would know that something was wrong for sure. It wasn't until recently, when I saw a picture of myself, did I realize how noticeable the muscle atrophy in my arms had become. My legs look only slightly better. In my opinion, I'm beginning to look a little like a stick man. I've attached a picture at the end of this post so you can make your own conclusion. Often, as most of you know, my simple answer to the question, how am I doing, is "okay", and except for a few people, I will rarely go into detail. For the rest of you, today's your lucky day because I'm going to give you some insight as to how I feel and show you how you can check anytime you want.
On the upper right-hand column of this blog page there is a tab titled "How Am I Doing ". Underneath that tab is a banner for a website called Patients like Me. This website allows people, who have been diagnosed with life-changing diseases, to share information regarding their condition with other patients who share similar illnesses. The website allows you to chart your condition, symptoms, and treatments as well as provide a forum for discussion with other patients, caregivers and medical professionals. I have gained more useful information from this website in one visit then I have from all of my doctor visits, combined. By clicking on the Patients like Me banner, you will be taken to my profile page. One of the first things you will notice is a picture of Sydney and Emily sitting next to a hot mermaid. Next to the mermaid you'll see a little multicolored man. This little man is a quick indicator of my disease progression. Progression is measured in four separate areas, the head, the chest, the arms, and legs. The color green indicates no disease progression. Yellow indicates minimum disease progression. Orange indicates moderate disease progression and red indicates severe disease progression.
Underneath the little man, you'll notice several charts. The top chart represents my FRS score. FRS stands for Functional Rating Scale. The ALS Functional Rating helps you keep track of your overall condition by measuring symptoms in the four areas I talked about above. There are three questions for each area: bulbar (chewing and swallowing muscles), activities of daily living (arms), mobility (legs), and breathing. The highest rating, one can receive is a 48. Currently, my rating is a 35. You can follow the progression of my score over the past three years by rolling your cursor over the points plotted on the chart. Your FRS score is determined by a self rating scale in 12 different areas of functionality.
The specific questions asked, and my current level of functioning, is as follows:
Speech (bulbar) - Speech is about more than how your voice sounds. It's how well you feel forming words in your mouth.
- Response = Normal speech processes
- Response = Normal
- Response = Normal
- Response = Able to grip pen but unable to write. You can hold a pen, even if it is very difficult, but you are not writing more than to sign your name.
- Response = Can cut most foods, although clumsy and slow; some help needed. You may be able to cut soft meats or fish but you need some help with harder meats.
- Response = Intermittent assistance or substitute methods. You might not need any help to dress but you are now wearing clothes that are easier to get on and off. You might have changed the way you put on your clothes. This includes the situation where your arms are normal but you have to sit to dress due to leg weakness or poor balance. You might be getting occasional help to dress, especially if you have to hurry.
- Response = Somewhat slow and clumsy, but no help needed. There is some difference compared to before you were ill. It takes more effort to turn OR pull up the covers. One activity could be normal but one is awkward.
- Response = Walking with assistance. This would include a cane, walking stick, ankle brace, walker, or wheelchair.
- Response = Need assistance. You REQUIRE the handrail or help in some way. You would not take the flight of stairs without either a handrail or a cane or someone helping you.
- Response = Your breathing is unchanged; it is perfectly normal with all activities compared to before you had ALS symptoms.
- Response = You have no change in your ability to breathe on your back; it is perfectly normal compared to before you had ALS symptoms.
- Response = None. You are not using BiPAP to help you breath. And, your physician has not recommended it to you.
Underneath the FRS scale is my FVC chart. FVC stands for Forced Vital Capacity and is a measurement of lung strength. It measures my ability to breathe independently. As you can see, my score is 88%, which I am told is in the normal range for a man of my age in good health.
Further on down the page you can find a list of my treatments, which includes all prescription drugs, vitamins and supplements, and any other therapies or treatments, I have taken or are currently taking. Additionally, there is a list of the specific symptoms that I am experiencing. You can read those for yourself if you would like. As with above, green indicates no symptoms, yellow indicates a mild symptom; orange indicates a moderate symptom and red indicates a severe symptom.
Typically, I will update my status in conjunction with my clinical visits every three months. My next scheduled visit is on October 14th, check back then, if you are interested in how I'm doing and you're looking for more information then my generic “okay” answer.
Told you I was looking thin!
Tuesday, July 27, 2010
Monday, July 26, 2010
2010 Greater Philadelphia Walk to Defeat ALS
Follow the link to view your official invitation to join the ALS WING FIGHTERS to walk for a cure!
2010 Greater Philadelphia Walk to Defeat ALS
May The Cure Be With Us
2010 Greater Philadelphia Walk to Defeat ALS
May The Cure Be With Us
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