Post 20 - Happy Birthversary

Birthversary: (burth vur sir e) -  The combined celebration of a birthday and an anniversary.
  
The first time a doctor suggested that I had ALS, I was pretty much un-phased. Whether it was ignorance or denial, I'm not really sure. I can remember the conversation like it was yesterday. The doctor asked me if I ever heard of ALS.  I replied, "Yes, that is Lou Gehrig's disease, right?" Except for the fact that I knew Lou Gehrig died of it (brilliant that I was able to figure out that Lou Gehrig died of Lou Gehrig's disease), some 65 years prior, I really didn't know much else about it. The doctor then told me "I think that is what you have." At the time it seemed like no big deal. I was actually okay with the diagnosis, because I figured in the almost 70 years since Lou Gehrig passed away, there had to be some sort of treatment or cure. After a couple of seconds, I asked the doctor “So what do I have to do?"  thinking that there was some medication, treatment or surgery that I could do.  When the doctor spoke spoke, it was then that I experienced my first bit of panic.  His response was "there's nothing to do." He then began to go into detail about how he came to this diagnosis.  At this point it became like Charlie Brown in school-blah, blah, blah, blah.  I was brought back into the conversation when I heard him say something about a wheelchair. I said "do you mean I'm going to be in a wheelchair in six months?" He said, "No, but probably within six years."  In any case, he was sending me to a neurologist who specialized in ALS for a second opinion before confirming anything.  It was on the ride home that denial finally took over.  It seemed inconceivable to me at the time that I could have ALS.  After all, my whole reason for seeing the doctor was due to some mild muscle twitching, and some arm fatigue. The doctor had told me about the characteristic symptoms of ALS, which included slurred speech, difficulty breathing, falling, and an inability to walk and so on.  On my ride home I was thinking that not only do I not have those symptoms, there is no way that I could be diagnosed with a fatal, non-curable disease. When I got home, I kind of halfheartedly told Tracey the diagnosis, still not believing it myself.  Still, somewhere deep down inside, I was thinking "what if...” At this point I did what probably 99% of you would do, and that is... Google!  On the first website I came to, this is what I found:


What is amyotrophic lateral sclerosis?


Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig's disease, is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles. … Eventually, all muscles under voluntary control are affected, and patients lose their strength and the ability to move their arms, legs, and body. When muscles in the diaphragm and chest wall fail, patients lose the ability to breathe without ventilatory support. Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. However, about 10 percent of ALS patients survive for 10 or more years.


… Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms.


… Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms.

It was that line that stuck in my head that night as I had the first of what was to be many tearful nights to come. (Incidentally, it was the last line of that paragraph “10 percent of ALS patients survive for 10 or more years” that became the inspiration, along with the words of a "stuck up,... half-witted,... scruffy-looking... nerf-herder" that led to the title of my blog, Never Tell Me the Odds.)

So why am I telling you this story today? Well, if you have not guessed it already, it was four years ago today that I had that fateful doctor's appointment. My diagnosis anniversary, if you will.  Even though it was four years ago today that I was given, at the time, a potential diagnosis, I could probably track my symptom onset to at least two years prior to that, although no one ever really knows for sure.  How am I so sure that this occurred four years ago today?  Well, besides the fact that it's probably something no one would ever forget, March 27 also happens to be my mother's birthday. I remember calling my mother to wish her a happy birthday, and then following that up with the news of my possible diagnosis. Now some people may think that the date of March 27 is now somewhat tainted due to the fact of the news that I received back in 2007.  But, in actuality, I see it as an omen, an ironic twist of fate, and a sign of good things to come.

To explain why, I'll need to turn the clock back a little over 30 years.  Now I will tell you that my memories from that time may be a little sketchy since it was over 30 years ago and due to the fact that I spent most of the 80s and a good part of the 90s trying to repress those memories (that's a story for another time and probably another blog).  It was around this time that my mother was diagnosed with severe ulcerative colitis.  She had spent the better part of two years in the hospital and my grandmother had come to live with us.  Due to the disease, my mother was practically bedridden, and she was not expected to live. I remember having conversations, at the time, with family members about who I wanted to live with.  I remember being about 12 years old and going to visit her in the hospital. She was almost unrecognizable to me. Although she was in her mid-30s at the time, she looked at least double that age.  My mother had lost a considerable amount of weight to the point where she was so weak, she could not even walk and had trouble talking.  Because she was unable to digest food and was so weak, her muscles atrophied to the point where she was only skin and bones. Eventually, due to some experimental surgery and the work of some wonderful doctors, my mother survived.  More importantly, I believe that my mother survived due to her will to survive, and the love for her children. I can remember her telling me that everything was going to be okay, and I believed her. I can remember the determination that she had to get better, for her children. I remember how after the colitis issue was resolved, she had to re-learn things like walking, eating and writing again, because she had lost so much muscle mass during her illness. This is how I know I will be able to get better. I like to think that I share that same combination of determination and stubbornness that my mother has, which helped her to survive during that time. There is no doubt that I share the same love of my family that she did for her family at the time and continues to today.

At times during the past four years, I've thought back to that time in my life, some 30+ years ago, and remember what my mother went through, fighting to survive, as a single parent, raising three children. Her battle has served as an inspiration to me and just like her, I will refuse to give in, do what I need to do, and come out victorious in the end. This morning, we celebrated my mother's 67th birthday. I can't wait until we celebrate my 67th birthday.

Happy birthday mom! I love you!

Post 19 - One Day at a Time

It's been a strange last couple of days. Saturday was okay and I was actually able to get out of the house for a little while, although I was pretty tired by the time we got back. Sunday was not so good. Monday morning I woke up and felt even worse, both physically and mentally. Somehow, though, I managed to get myself up and get to work. I ended up sitting in my car for about 45 minutes or so, waxing poetic and debating whether I really wanted to go into work. By the time I left for the day, I was actually feeling pretty good again and couldn't even remember what I was thinking about earlier that morning. Tuesday, when I woke up, I was still feeling pretty good, both physically and mentally, so it was off to work I went. By the end of the day Tuesday I was feeling very lethargic and very down. On Wednesday, the weather being the way it was, I was not anticipating a very good day, and it lived up to expectations. I can't imagine there's anyone else out there who wants spring to get here faster than I do.

Then came Thursday, where the weather was actually worse than the day before. Because Tracey was substituting in the Mansfield school district on this day, this meant we had to be up and out of the house a little bit earlier than usual. Not to mention the fact that I was planning on staying late at work to attend a parent support group at 5:00 PM and then the Board of Education meeting at 7 PM. I did not end up getting home until after 9:30 PM. All in all, a 12 hour plus day, this is unheard of for me. By the time I got into bed around 10:30 PM., I was feeling quite tired and exhausted but yet somehow, I was feeling a little bit better than I expected. That leads me to this morning. When I woke up I had a sharp pain in my left hip. This pain has been occurring more frequently and appears to be getting worse. It also has been affecting me in the middle of the night. I often get this pain when I sleep on my left side. If I sleep on my right side, then I will often get a severe pain in my right shoulder. Sleeping on my back, we'll often lead to pain in my lower back. Because of this, I will usually awake 3 to 5 times a night, because of the pain, to turn over, which in itself is no easy task (try doing this one might while keeping your arms still at your side). When I had gotten out of bed this morning, the pain in my left hip continued. To make matters worse, my right knee was giving me pain as well. (At this point, I'm sure you're thinking to yourself "what a mess." If so, you'd be correct.) Eventually, the pain in my hip and the pain in my knee had gone away like it always does.

Not exactly a great start to the day. Not really a big deal, since I was not planning on it being a banner day anyway. However, despite the recently cold and wet weather and the long Thursday, I actually felt pretty good today and probably had one of the more productive days at work that I've had in a while. But of course, by the time I got home I had a lot of difficulty getting out of my car and it was a real struggle to get into the house. Therefore, today was just par for the course as far as the last week or so have gone. Typically, I will have a good day, followed by a bad day or some other similar pattern. Usually, somewhat predictable. Instead, over the last week to two weeks, it seems that my mood, demeanor, stamina, and physical and mental strength have been fluctuating throughout the day. What that means, if anything, I have no idea. What has really seemed promising to me though is how relatively well I felt for most of yesterday and today. One day at a time, right?



My biggest fans!



Dealing with things one day at time has never been my strong point and certainly does not come easy for me. I'm the type of person that hates surprises and would much rather know what's about to happen and when. That's why I get so pissed off when the weather forecast is wrong. I'm the type of person that likes a plan. You don't always have to stick to it, but you've got to have one. For me, it has always been necessary to try and anticipate the future, plan for the future. I didn't always stick to the plan, but I had one. Often, when people ask me how I'm doing I'll respond by saying like "you know, just taking things one day at time" but to tell you the truth, that's just something that I kind have been saying but don't really mean. It seems appropriate to say, but in actuality, I really don't know what to say. Some days, I'm worried about the future. Some days, I'm very worried about the future. Some days, I’m optimistic about the future. Rarely, have I focused on the here and now, but that is something I'm learning and really starting to enjoy. As I mentioned before, when I got home from work this afternoon I was completely exhausted. By the time Tracey was able to help me into the house I was just able to make it to my chair, lay back and shut my eyes. Within, what appeared to be seconds, first Sydney and then Emily, were on my lap asking me to read them books. My first thought, was to ask them to "please leave me alone for just a couple of minutes so I could rest" but I quickly realized how lucky I was to have two wonderful children so excited to have their father home. On a different day, I might have been thinking to myself about how I may not have the ability to read to them much longer, or worse, that in the future I may not be around to read to them. But today, without hesitation, I started reading to them. Today was a good day!

Site Update

I have made some additions to the blog, including the ability to sign up for e-mail notification.  If you're interested in receiving an e-mail notifying you every time a new blog is posted, then please enter your e-mail address in the box at the top right of the page where it says: Follow me by e-mail.  Additionally, I have added a Facebook badge, which will link you directly to my Facebook page. The link to my "PatientslikeMe" page is still there, of course, if you want to keep tabs on my current condition. As always, please feel free to link this blog with a blog of your own, your Facebook page or twitter account.  I encourage you to share this with anyone who may be interested.  Awareness is just the first step towards treatment and a cure!

ALS TDI (ALS Therapy Development Institute) :: News - Article Details

ALS TDI (ALS Therapy Development Institute) :: News - Article Details

MDA’s Augie’s Quest Expands Testing of Potential ALS Therapeutics With New $2 Million Grant to ALS TDI


03/01/2011

By: Robert A. Goldstein

Post 18 - Falling off the Wagon

Well, if you perused my Facebook page within the last couple of hours or so, you will see I've called an end to my tonic experiment. If you don't know what I'm talking about, go back and read my blog posting from July 14, 2010 (Post 4 - A “Sobering” Reality). The results, I have found, were inconclusive, and my reasons for stopping the experiment are twofold. First off, I have really missed the taste of beer. Not that I had abstained from beer completely during my experiment, but I did opt for the vodka or gin and tonic a number of times as an alternative. The second reason for stopping the trial at this time was due to the significantly fewer episodes of cramping I have experience in my legs and arms over the past several months. This I attribute to any one of three reasons. First, for whatever reason, maybe I'm just not getting the muscle cramps like I used to. That would be good. Second, since I have cut down considerably on my alcohol intake and have been eating somewhat healthier, perhaps this has played a role. Lastly, I am concerned that as my muscles continue to weaken and atrophy, that there really is nothing left to cramp up. I have asked this question before, during one of my clinic visits and was told that that was not the case; however, since I seem to receive contradictory information from visit to visit, I'll ask the question again when I go back to University of Pennsylvania hospital at the end of April. If this were the case, it would be very disheartening for me, since the majority of my cramping now takes place in my neck. If you've never had a cramp in your neck, then consider yourself very lucky. It makes the cramps that you get in your calves seem like a little pinch. I have had muscle cramping in my neck sporadically since my diagnosis. But now it has been occurring on an almost daily basis, sometimes occurring three or four times in a day. My fear is that my neck would follow the same path as my arms and legs. That is, cramping, followed by continuing weakness, until the muscle atrophies, and leaving me with little to no strength. I have certainly been experiencing an increased weakness in my neck over the past four months or so. When it is bad, my chin will rest on my chest, and it becomes a real struggle to lift my head. Even then, I can only keep my head up for about 5 to 10 seconds before my chin drops back down to my chest. Thankfully, this only seems to occur first thing in the morning, at night after a long active day, or at other times when I exert myself. It helps when I'm able to sit in a chair with my back supported. It is even better when I'm able to sit in a chair that also supports my neck.




Getting back to my first reason for halting the tonic trial, there is something about sitting outside and enjoying a good beer. Something that is very difficult to do in January and February.  Last night, I actually had two beers with dinner.  I am sad to say I was definitely feeling "it" before I was even halfway done with my second beer.  Forget about drinking and driving, my concern was with drinking and walking, but I managed to survive the night.  It really felt good to have a beer with dinner.  I was also inspired by the opportunity to attend a grilled cheese and beer tasting at the World Café Live in Philadelphia. I have previously attended two others and the grilled cheese and beer pairings were outstanding. I also talked about this in the previous blog posting that I mentioned above. Typically, the cheese and beer tastings are limited to about 70 people and have sold out within days of going on sale, however, this time it appears as though they are preparing for a larger crowd. Tracey and I are planning on going to the Monday, April 18 tasting (typically a school night but this will be occurring during the week of my spring break) if anyone would like to join us. I can promise you that you will not be disappointed. Plus, you get to watch me drink beer through a straw.

Post 17 - Back in the Pool

Okay, I must admit, I may be a little bit rusty at this. My New Year's resolutions, of which I had two, were for me to start blogging again and to stop procrastinating. I never was any good at making New Year's resolutions. After a quick review of my last post shows that it has been almost 5 months since I last posted on my blog. Over the past five months several people have asked about my blog and I have never been able to give a clear-cut answer as to why I had stopped posting. To tell you the truth, I'm not really sure. They were definitely several factors, but since I am obviously blogging again, the reasons are now moot. I will attempt to provide an update and a quick synopsis of the last five months. Starting with the update, as my neurologist would tell you, I'm still breathing and still swallowing, so therefore, everything is great. I, of course, do not entirely share that point of view. I am now unable to lift either of my arms, although I still have some strength in my right arm. My left arm and hand are almost entirely unusable (remember, I am left-handed.). I am no longer able to hold a pen or use any cutlery with my left hand. I am able to use my right hand to hold a fork or spoon. But after two or three trips to the mouth, my arm fatigues, and I need to rest before continuing. Driving is another area that is proving to be continually difficult. Actually, driving is the least of the problem. The greatest difficulties that I face is getting in and out of the car, getting my seatbelt on and off, closing the door (I can't reach out with my left arm), getting the car in gear, and getting the key in and out of the ignition. Except for all of that, driving is a cinch. Actually, I do experience some difficulty backing out of parking spots, but really, that is all. The problem is, once I work my way through all of the difficulties, I am literally completely exhausted. Usually, I will sit in the car for several minutes just to catch my breath and to psych myself up to face the next endeavor. Also, with regard to my hand strength and fine motor skills, I can only use my right hand to type, and even that is somewhat difficult. Therefore, I am almost completely reliant on my speech to text software, so please continue to ignore any spelling or grammatical errors that you may come across. I do my best to proofread that I don't always catch all of the mistakes.
As you may have guessed, since I am still driving, I am still working. Just like anybody else, I experience my good days as well as my bad. I try and do as much for my office as possible since it has become quite difficult for me to get out and visit schools. This has been one of the toughest things for me to accept since I have questioned my own effectiveness as a supervisor because of my limitations. Additionally, being in the schools and visiting with teachers, and especially students, has always been my favorite part of the job and my escape, whenever I needed a break.

Since I have covered the breathing, swallowing, and the arms, I guess it's time for me to talk about the legs. Last month, I went for my wheelchair assessment, which is an evaluation to judge my suitability for a wheelchair. This was something that I knew was inevitably going to happen and yet somewhere deep down inside, believed that it would not happen. This assessment brought about two ironic and somewhat disappointing twist of fate. First, after ignoring the recommendations from almost all of the members of my care team (neurologist, social worker, occupational therapists, physical therapists, clinical nurse, psychiatric nurse) at the University of Pennsylvania hospital for the past year and a half regarding the use of a wheelchair, I finally caved in and decided to go. When I walked into the evaluation room, the therapist took one look at me, and with a scared look in his eye, declared that insurance would never approve me for a wheelchair. I'm thinking, if they are not going to approve me now, how in the hell were they going to approve me over 16 months ago. Needless to say, I had the evaluation done and I was recommended for a power wheelchair. At this point, we are now waiting for the insurance company to deny it is so my doctor can appeal their decision, which I am told is then approved 99% of the time. When I tried out the loner wheelchair as part of the evaluation, I was excited to see that it had a little horn. I thought to myself, "that may be fun" and thought immediately of George Costanza. Unfortunately, the representative from the wheelchair company, who was also present at the evaluation, informed me that insurance will not pay for the horn. As it turns out, the wheelchair is going to run around $40,000. Of course, the price is marked up considerably, because insurance will only pay for about half of the cost. My out of pocket co-pay is expected to be around $4000, with the wheelchair company eating the rest. But, as I said, the price is marked up to account for the limited insurance reimbursement, so really the only person with any out-of-pocket expense will be me. I can't begin to tell you how much I hate insurance companies. I'll save that for another blog.

In addition to the wheelchair evaluation, about two weeks ago we had someone out at the house to do a wheelchair ramp evaluation. There really is no point having a wheelchair, unless I can get in and out of the house. Luckily, the Philadelphia chapter ALS Association has been very helpful in facilitating the process and will even be covering the cost of the ramp. In case you were wondering where the money went, that we raised from the ALS walk, here it is. Thank you all once again, who donated, raised funds, and walked with me.

The last piece of this puzzle will be a modified vehicle that can accommodate a power wheelchair. Unfortunately, I have come to find out that insurance will not cover the cost of a vehicle, or the cost to modify our current vehicle. This may turn out to be upwards of $20,000 as well.

Getting back to my legs, it seems as though the weakness has progressed faster than I expected. Of course, it may only be my imagination. I could maybe walk 35 to 50 feet without my leg braces before I was to become too fatigued or lose my balance. Even with my leg braces, my walking is quite limited, and I still have significant balance issues. I can still go down steps, provided that there is a hand rail and/or I have some assistance. At most, I can probably go up two or three steps, but I would need someone to assist me. And this is all with my leg braces on. Overall, my balance is quite unsteady, and I have had numerous falls over the past several months, with the most recent ones occurring this past Tuesday morning and Monday evening. Luckily, they have not done much damage except for a few bumps and bruises.

The other great difficulty that I'm experiencing due to my leg weakness is the ability to get up from a seated position. Therefore, as Hanukkah/Christmas gift, we purchased a lift chair, which assists me in standing up. Otherwise, I need to be very selective in the type of chair I sit in if I plan on standing up under my own power.

Looking back over what I have written today, it seems a lot longer than what I had intended to write, therefore, I will spare you the synopsis of the past five months and save that for another day. Regardless of the doom and gloom I may have portrayed above, I am still feeling more optimistic on the whole that in some way, shape or form, I will beat this thing. For the most part, my family and friends have been terrific and it is because of their support and encouragement that I'm able to go on like I do. I can't even put into words how terrific Tracey has been in dealing with me and the entire situation. Even Sydney is beginning to rise to the occasion, which makes me so proud. You know, now that I think about it, I do have a lot to write about.