EP72
Member
Some of you may have seen the thread asking about bringing video cameras to get some footage during the Fast Pass rally for a fellow boatin/bassin brother who isnt physically able to participate anymore.
This is a bit of info about Ron Miller (Fassbass) I copyed his story from another site we met on for others to see who we're doing this for and why. Ron is such an insparation, and doesnt know the meaning of quit or giving up. Hes a winner and chooses to not let a road block in life stop him from anything he sets his mind to. I believe he's even working on finishing his degree.
Here are his words:
I wanted to share some information and facts about A.L.S. which stands for Amyotrophic Lateral Sclerosis. The more recognized name you may have heard before is Lou Gehrigs disease. Lou Gehrig has been gone over 70 years and still we are not remotely close to a truly viable treatment. If you have had a family member diagnosed then you know well how devastating this disease is not only to the person with the disease but the whole family. It will drain you physically, emotionally, and financially.
What is it?
It is a neuromuscular disease that kills the nerve connection from brain to spinal cord for
voluntary muscle control. What that means is you lose your ability to walk, talk, eat, or move and eventually breath on your own while not affecting your mind in any way. The worse case scenario is called “locked in”. Imagine not having a single muscle you can move. You cannot blink or move your eyes the tiniest bit. You also never lose sensation, continence, or sexual function. . You feel everything. You get to watch your body wither away as your muscles atrophy (shrink from lack of use) down to nothing. Most patients die from respiratory failure by infections
or inability to breath well enough to expell carbon dioxide.
THE FACTS
There is NO known cause.
There is NO viable treatment .(treat the symptoms, not the disease )
Everyone progresses differently but the end result is always death (without mechanical help)
There is no racial, gender, age, socioeconomic boundaries.
Every year 5,600 people are newly diagnosed
There are 30,000 people at any given time in the fight for their lives with ALS
It once was considered an old mans disease but it can affect ANYONE. Just this last month a 16 old girl in North Carolina passed from this horrible disease. (see link below)
http://www.jdnews.com/articles....html
Studies have now said our military veterans from the Gulf war are twice as likely to contract the disease. The one medication for ALS called RILUTEK has the possibility of slowing progression an average of 2 months and costs $800.00 a month. Hardly worth it in my opinion. Because everyone progresses at different rates there is really no way to tell if its helping or not. The medicine was put on the FDA approval list in 1996 and nothing has since been put out for ALS . Pharmaceutical companies aren't interested in investing millions of dollars in research because the patient base is too small to be financially worthwhile. The vast majority of research is funded through organizations such as M.D.A. and ALSA doing walks and the Labor day Jerry Lewis Telethon. These organizations split there money for not only research but patient services. They maintain power wheelchairs , communication
devices and many smaller but equally important kinds of equipment.
Equipment costs alone are astronomical. A fully functioning power wheelchair is $30,000 plus. A
communication device can be anywhere between a few hundred for a hand held device up to 15,000 plus for an Eyegaze computer. I can't imagine cost to buy a ventilator (breathing machine). Living at home you must have 2 ventilators incase one fails. If you don't have great insurance for durable medical devices and not very wealthy it can quickly destroy you financially.
If your wondering why I am posting this, this has been my life the last 10 years. I now am living in a long term acute care hospital and been here now over 5 years. I am completely paralyzed from the neck down. I can't speak, swallow, or breathe without a machine. I am typing this with only my eyes. Now the weird part of this is I still love life. I don't regret my current life although its not for everyone. We all have our crosses to bare. Be grateful for the blessings in your life. I was only 30 when my symptoms began. We aren't guaranteed tomorrow.
Rons right, we're not guaranteed a tomorrow, and thats what prompted me to ask around about making a video for him from the event so that maybe we can give back just a little, of what Ron loved to do. Thankyou again to everyone whos helping with pics and footage, and Alli drenelin for doing the editing. If your on facebook, look Ron up, he loves to talk and visit.
Ron before.
Ron now.
This is a bit of info about Ron Miller (Fassbass) I copyed his story from another site we met on for others to see who we're doing this for and why. Ron is such an insparation, and doesnt know the meaning of quit or giving up. Hes a winner and chooses to not let a road block in life stop him from anything he sets his mind to. I believe he's even working on finishing his degree.
Here are his words:
I wanted to share some information and facts about A.L.S. which stands for Amyotrophic Lateral Sclerosis. The more recognized name you may have heard before is Lou Gehrigs disease. Lou Gehrig has been gone over 70 years and still we are not remotely close to a truly viable treatment. If you have had a family member diagnosed then you know well how devastating this disease is not only to the person with the disease but the whole family. It will drain you physically, emotionally, and financially.
What is it?
It is a neuromuscular disease that kills the nerve connection from brain to spinal cord for
voluntary muscle control. What that means is you lose your ability to walk, talk, eat, or move and eventually breath on your own while not affecting your mind in any way. The worse case scenario is called “locked in”. Imagine not having a single muscle you can move. You cannot blink or move your eyes the tiniest bit. You also never lose sensation, continence, or sexual function. . You feel everything. You get to watch your body wither away as your muscles atrophy (shrink from lack of use) down to nothing. Most patients die from respiratory failure by infections
or inability to breath well enough to expell carbon dioxide.
THE FACTS
There is NO known cause.
There is NO viable treatment .(treat the symptoms, not the disease )
Everyone progresses differently but the end result is always death (without mechanical help)
There is no racial, gender, age, socioeconomic boundaries.
Every year 5,600 people are newly diagnosed
There are 30,000 people at any given time in the fight for their lives with ALS
It once was considered an old mans disease but it can affect ANYONE. Just this last month a 16 old girl in North Carolina passed from this horrible disease. (see link below)
http://www.jdnews.com/articles....html
Studies have now said our military veterans from the Gulf war are twice as likely to contract the disease. The one medication for ALS called RILUTEK has the possibility of slowing progression an average of 2 months and costs $800.00 a month. Hardly worth it in my opinion. Because everyone progresses at different rates there is really no way to tell if its helping or not. The medicine was put on the FDA approval list in 1996 and nothing has since been put out for ALS . Pharmaceutical companies aren't interested in investing millions of dollars in research because the patient base is too small to be financially worthwhile. The vast majority of research is funded through organizations such as M.D.A. and ALSA doing walks and the Labor day Jerry Lewis Telethon. These organizations split there money for not only research but patient services. They maintain power wheelchairs , communication
devices and many smaller but equally important kinds of equipment.
Equipment costs alone are astronomical. A fully functioning power wheelchair is $30,000 plus. A
communication device can be anywhere between a few hundred for a hand held device up to 15,000 plus for an Eyegaze computer. I can't imagine cost to buy a ventilator (breathing machine). Living at home you must have 2 ventilators incase one fails. If you don't have great insurance for durable medical devices and not very wealthy it can quickly destroy you financially.
If your wondering why I am posting this, this has been my life the last 10 years. I now am living in a long term acute care hospital and been here now over 5 years. I am completely paralyzed from the neck down. I can't speak, swallow, or breathe without a machine. I am typing this with only my eyes. Now the weird part of this is I still love life. I don't regret my current life although its not for everyone. We all have our crosses to bare. Be grateful for the blessings in your life. I was only 30 when my symptoms began. We aren't guaranteed tomorrow.
Rons right, we're not guaranteed a tomorrow, and thats what prompted me to ask around about making a video for him from the event so that maybe we can give back just a little, of what Ron loved to do. Thankyou again to everyone whos helping with pics and footage, and Alli drenelin for doing the editing. If your on facebook, look Ron up, he loves to talk and visit.
Ron before.
Ron now.
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