The silent majority
I had no idea that there were so many people suffering with ALS or Lou Gehrig's Disease that did not know of the help that is available. Oh sure, there is no cure, it is still a terminal disease with an average life span of 3-5 years, but there are two major national organizations that were founded to help those of us who have ALS.
I did not know squat about ALS until I was diagnosed with it two years ago. Then the first news after being presented with my diagnosis was that I would probably die within the 3 to 5 year period. That was bad enough but I had been bouncing around from doctor to doctor for three years trying to find out why I was falling, walking like the Frankenstein monster, jumping out of my skin with any noise or unexpected sound, and slurring of my speech. Heck I thought I may not make to next Christmas. I better get busy and tie up the many loose ends that I had strung all around me in a sea of procrastination.
I read all the literature that clinic that diagnosed me gave us. I googled and regoogles the Internet to educate myself about this strange malady that had befallen me. Well, I learned that only 80% die within the 3 to 5 year period. At this point that was great news. I might be one of the 20 % that lived longer. Nonetheless, it changed our entire approach to life. We had to start adapting our home to provide access as my body deteriorated to where I needed a wheelchair full time, had to deal with toileting and bathing as I became more paralyzed. How long would it take me to lose my legs, arms and swallowing? Only God knows because ALS hits each patient differently both in terms of how the paralysis advances and how fast it advances.
Fortunately, I found a local chapter of the ALS Association and my wife and I began to attend support groups with others in the same leaking boat that I was in. I found that ALSA had a loan closet where we could get a wheelchair, and all sorts of other devices that would keep me able to live as my body gives out. I found that there was an agressive research program to find the cause, better treatments and even a cure. I found all of this so easily because of my access and famiarity with the Internet that it came as a huge shock to me that a relative few are aware of the help that is available. ALSA has case managers that can help with the intricacies of accessing Medicare, Medicaid and Social Security; of the availability of special ALS clinics where a multidisciplinary team that has seen many patients can follow your progress and order devices and medicines to ease the symptoms and extend the time where the quality of life is better.
I found all of this, and became involved with using the help that is available, that it just came as a shock when I learned that even for our State of Florida where there is an estimated 1,500 patients, that only 600 are connected with ALS organizations and of that number only half have Internet access and email. Now it is bad enough to be dealing with this plague, but not to know of and have access to what little help exists is mindboggling. From my own personal experience I can tell you that dealing with a deteriorating health situation is pretty damned tough even when you are aware of and are accessing the help that is available. Somehow we must reach out to those who are out there suffering alone, afraid and without access to the many devices that extend the quality of life.
Somehow, we have to figure out a way to reach this underserved population, a population that could be as large as 15,000 nationwide, maybe more. We don't have a Michael Fox to give the disease the prominent face as he does for MS. Unfortunately, with about 5,000 new diagnosis each year and about the same number of deaths, the estimated national population of people with ALS remains relatively constant at around 30,000. It is truly an orphan disease and the orphans don't even know that there are orphanages out there to relieve the hurt.
I wonder how we can change this. How can we reach those lonely people and hold out a helping hand. I am not sure, but I can tell you that I am working with our local ALS Association Chapter to reach out more effectively.
I did not know squat about ALS until I was diagnosed with it two years ago. Then the first news after being presented with my diagnosis was that I would probably die within the 3 to 5 year period. That was bad enough but I had been bouncing around from doctor to doctor for three years trying to find out why I was falling, walking like the Frankenstein monster, jumping out of my skin with any noise or unexpected sound, and slurring of my speech. Heck I thought I may not make to next Christmas. I better get busy and tie up the many loose ends that I had strung all around me in a sea of procrastination.
I read all the literature that clinic that diagnosed me gave us. I googled and regoogles the Internet to educate myself about this strange malady that had befallen me. Well, I learned that only 80% die within the 3 to 5 year period. At this point that was great news. I might be one of the 20 % that lived longer. Nonetheless, it changed our entire approach to life. We had to start adapting our home to provide access as my body deteriorated to where I needed a wheelchair full time, had to deal with toileting and bathing as I became more paralyzed. How long would it take me to lose my legs, arms and swallowing? Only God knows because ALS hits each patient differently both in terms of how the paralysis advances and how fast it advances.
Fortunately, I found a local chapter of the ALS Association and my wife and I began to attend support groups with others in the same leaking boat that I was in. I found that ALSA had a loan closet where we could get a wheelchair, and all sorts of other devices that would keep me able to live as my body gives out. I found that there was an agressive research program to find the cause, better treatments and even a cure. I found all of this so easily because of my access and famiarity with the Internet that it came as a huge shock to me that a relative few are aware of the help that is available. ALSA has case managers that can help with the intricacies of accessing Medicare, Medicaid and Social Security; of the availability of special ALS clinics where a multidisciplinary team that has seen many patients can follow your progress and order devices and medicines to ease the symptoms and extend the time where the quality of life is better.
I found all of this, and became involved with using the help that is available, that it just came as a shock when I learned that even for our State of Florida where there is an estimated 1,500 patients, that only 600 are connected with ALS organizations and of that number only half have Internet access and email. Now it is bad enough to be dealing with this plague, but not to know of and have access to what little help exists is mindboggling. From my own personal experience I can tell you that dealing with a deteriorating health situation is pretty damned tough even when you are aware of and are accessing the help that is available. Somehow we must reach out to those who are out there suffering alone, afraid and without access to the many devices that extend the quality of life.
Somehow, we have to figure out a way to reach this underserved population, a population that could be as large as 15,000 nationwide, maybe more. We don't have a Michael Fox to give the disease the prominent face as he does for MS. Unfortunately, with about 5,000 new diagnosis each year and about the same number of deaths, the estimated national population of people with ALS remains relatively constant at around 30,000. It is truly an orphan disease and the orphans don't even know that there are orphanages out there to relieve the hurt.
I wonder how we can change this. How can we reach those lonely people and hold out a helping hand. I am not sure, but I can tell you that I am working with our local ALS Association Chapter to reach out more effectively.
posted by gamboachuck at 5:37 PM
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