Hi,
First post here. My brother became symptomatic in January 2011, and was diagnosed with LMND in august. Has since been diagnosed with ALS. Really hard to deal with when I am not with him, although I am good when we are together, he is my closest blood relative, excluding my wife and kids. He became symptomatic within 2 weeks of retiring after 34 years with a natural gas company.
It is hard to understand how there is not a way that you can trace it back (with certainty) to a specific environmental issue, or to something specific that happened in his life. I am a diagnostician in my field and am used to being able to find something that I can put my finger on as a reason for cause and effect. There are things that are suspect, but again after reading on here and everything else I have been able to read on ALS, I come back thinking that all of you who are actually living this horrible disease would have nailed down a common denominator, but there in not one, ALS just happens. I don't know why I feel this way, cancer just happens too, as do heart issues with people who are in low risk, and you find yourself shaking your head and saying "why him", or why anybody for that matter.
The only thing that I find is that the more research I do, the less certain I am of what brought this disease on. Genetic from birth? One article said that people who have had head injuries have a higher rate, and there have been posts written on here that even suggested pesticide exposure may have contributed? The more I read, again the less I know. ALS just happens!
So all of everyones research leads the same thing I read when my brother was first diagnosed. There is nothing that anyone can do, the doctors promise that they can make you comfortable, but reading here I don't see that. My brother is completely opposed to taking pain killers, so he just deals with it. He is barely able to walk more than a short distance now with his cane, both legs are braced, and his right hand severely affected, his left is starting to be affected also. This man is the same that just two years ago was hunting elk with me in the mountains, he and I dragging a 600# animal around together, hoisting it up in a big tree. Eleven months ago we went together for the last time, and even though it was the warmest year we have ever hunted in, the cold was too much, and he had to leave early, ending 35 years of hunting together. Gosh, I cant believe I am just writing all of this on here, I know I should be more uplifting, I just love him so much and don't want him to go. I hunted in the mountains with a friend a couple of weeks back, the first elk hunt I have ever been on without him and I kept taking pictures and video and sending it to him in real time. He wanted to be there so bad. I found myself breaking down quietly when I was alone on the trip, something that has been happening a lot lately. I feel bad, he is the one who is going through all of this yet I am the one breaking down.
God bless all of you who are going through this, I know you are dealing with things I cannot even fathom. There is strength in your words, and i appreciate what you have all shared.
Jim