BoyyDavoMan
Well-known member
The following is my opinion, and is not meant to offend anyone. It is just an observation and a comment.
Several recent posts on this website have addressed the occurrence and prevalence of ALS in relation to other neurological diseases. Some people have jumped on others, accusing them of bringing fear into this forum. Reading some of the articles and looking at statistics, it is clear that there may be some misinterpretation. However, I don't think it is done with the intention of scaring people. After all, an educated patient is better than an ignorant patient -- at least that's what my doctors have told me.
A variety of sources have been quoted. The fact remains that ALS is relatively rare. So is Multiple Sclerosis. Based on statistics from the National Institute of Health, a person is 10 times more likely to get MS. Dr. Olney presented numbers that differ. I don't know where Dr. Olney gets his numbers, but I think he is giving ballpark estimates. He is an ALS expert, so his numbers may be closer. Statistics depend on a variety of factors: sample size, case reporting, error in sampling, etc. One statistic that I have seen is that 1 in 700 people will die of ALS. This makes sense. ALS is almost always fatal within 3 to 5 years. However, how many in 700 will die from heart disease? How many from cancer? Regardless, when compared to other things like cancer and heart disease, these neurological ailments are rare.
This is a support group for BFS and posting messages containing information concerning information on ALS is typically not well-received. Why are you talking about ALS when this is a community? We talk about it because of our fears. Some people have even gone so far to represent ALS with "***". It reminds me of a phenomenon that is observed in some cultures. People believe that if you say the devil's name, he will appear. It's analogous to the belief that by saying ALS, it will appear. Or perhaps by mentioning ALS, fear will appear. Why is that?
Where does fear come from? Does it come from a word? Does it come from 3 letters? Can someone make you be afraid?
I don't believe so. Fear comes from within your own mind. Anxiety comes from within your own mind. Many of us let our own mind tear ourselves apart. I believe that many members of this support group have serious anxiety and fear issues. I won't point fingers at anyone, because I was one of them, having been treated for generalized anxiety disorder when I first developed BFS symptoms. The first 6 months, I was convinced that I was dying of ALS. The doctors had to be wrong! Why did I think this way? Did I want to die? No. Why do we do this to ourselves?
We fear death. We fear how we will die. We cannot deal with uncertainty. By coming to a support group, we hope to alleviate our fears. Yet, we must confront our fears before we can conquer them.
We try to soothe ourselves, calm our fears by immersing ourselves in statistics. 1 in 100,000. 3 per 100,000. 1 in 1,000. We look to statistics to relieve some of the uncertainty that breeds fear. When some numbers change, it may increase our fear. Why? Why are we enslaved by our own fear?
Life is uncertain, but there is one certainty: As soon as we are born we are destined to die. Accepting this mortality is important. If we live in fear and anxiety, precious energy and time is wasted. This time and energy could be better spent enriching our lives. We can enjoy spending time with our family, friends, and even co-workers. We can watch a sunset, listen to birds sing, smell the spring wildflowers. We can rejoice in our lives.
We are miraculous creatures. No other animal has our self-awareness, our ability to anticipate, to think about the past, present and future. Our brains are wired for complex analyses and thought. We experience emotion like no other species. These same blessings can also be a curse. The same mind that can feel love, make a joke, feel compassion, and solve a mathematical problem can also trap us in fear, anger, hatred, prejudice.
In my opinion, we all must overcome our fear. Every person is different. Some people just need a GP's diagnosis. Others need extensive psychiatric help. Most of us are in between.
I don't want to come across like Tony Robbins or some self-help guru, but I think we need to simply focus on one fact:
You are alive today. Tomorrow is uncertain. So get out and LIVE!
Several recent posts on this website have addressed the occurrence and prevalence of ALS in relation to other neurological diseases. Some people have jumped on others, accusing them of bringing fear into this forum. Reading some of the articles and looking at statistics, it is clear that there may be some misinterpretation. However, I don't think it is done with the intention of scaring people. After all, an educated patient is better than an ignorant patient -- at least that's what my doctors have told me.
A variety of sources have been quoted. The fact remains that ALS is relatively rare. So is Multiple Sclerosis. Based on statistics from the National Institute of Health, a person is 10 times more likely to get MS. Dr. Olney presented numbers that differ. I don't know where Dr. Olney gets his numbers, but I think he is giving ballpark estimates. He is an ALS expert, so his numbers may be closer. Statistics depend on a variety of factors: sample size, case reporting, error in sampling, etc. One statistic that I have seen is that 1 in 700 people will die of ALS. This makes sense. ALS is almost always fatal within 3 to 5 years. However, how many in 700 will die from heart disease? How many from cancer? Regardless, when compared to other things like cancer and heart disease, these neurological ailments are rare.
This is a support group for BFS and posting messages containing information concerning information on ALS is typically not well-received. Why are you talking about ALS when this is a community? We talk about it because of our fears. Some people have even gone so far to represent ALS with "***". It reminds me of a phenomenon that is observed in some cultures. People believe that if you say the devil's name, he will appear. It's analogous to the belief that by saying ALS, it will appear. Or perhaps by mentioning ALS, fear will appear. Why is that?
Where does fear come from? Does it come from a word? Does it come from 3 letters? Can someone make you be afraid?
I don't believe so. Fear comes from within your own mind. Anxiety comes from within your own mind. Many of us let our own mind tear ourselves apart. I believe that many members of this support group have serious anxiety and fear issues. I won't point fingers at anyone, because I was one of them, having been treated for generalized anxiety disorder when I first developed BFS symptoms. The first 6 months, I was convinced that I was dying of ALS. The doctors had to be wrong! Why did I think this way? Did I want to die? No. Why do we do this to ourselves?
We fear death. We fear how we will die. We cannot deal with uncertainty. By coming to a support group, we hope to alleviate our fears. Yet, we must confront our fears before we can conquer them.
We try to soothe ourselves, calm our fears by immersing ourselves in statistics. 1 in 100,000. 3 per 100,000. 1 in 1,000. We look to statistics to relieve some of the uncertainty that breeds fear. When some numbers change, it may increase our fear. Why? Why are we enslaved by our own fear?
Life is uncertain, but there is one certainty: As soon as we are born we are destined to die. Accepting this mortality is important. If we live in fear and anxiety, precious energy and time is wasted. This time and energy could be better spent enriching our lives. We can enjoy spending time with our family, friends, and even co-workers. We can watch a sunset, listen to birds sing, smell the spring wildflowers. We can rejoice in our lives.
We are miraculous creatures. No other animal has our self-awareness, our ability to anticipate, to think about the past, present and future. Our brains are wired for complex analyses and thought. We experience emotion like no other species. These same blessings can also be a curse. The same mind that can feel love, make a joke, feel compassion, and solve a mathematical problem can also trap us in fear, anger, hatred, prejudice.
In my opinion, we all must overcome our fear. Every person is different. Some people just need a GP's diagnosis. Others need extensive psychiatric help. Most of us are in between.
I don't want to come across like Tony Robbins or some self-help guru, but I think we need to simply focus on one fact:
You are alive today. Tomorrow is uncertain. So get out and LIVE!