I thought it might be appropriate for me to say why I am doing all this. As some know I have a family member who suffered a stroke some years ago and what was a fairly ordinary sort of drinking problem got a lot worse, leading to all sorts of usual problems. Trouble is it got even worse and nothing, including residential rehab worked. Imagine the worst and we have pretty much been there.
Nothing worked until first a bit of vitamin therapy helped but that was exhausting, expensive and just didn't seem to be good enough. It was like being on a treadmill.
Eventually we heard about Dr. Ameisen and read the book, got the medication and after years of trying to get it properly prescribed because my job prevented me from ordering on line, we got a doctor who now prescribes properly, understands the treatment and said that other doctors should know about this. He even encouraged me to write to the government urging them to tell doctors about it.
All through this ordeal which lasted 10 years we have had opposition, skepticism and every kind of damaging, destructive behaviour from people who should be doing something about this illness.
Instead of being treated as people who are responsible members of society, educated professionals, we have been treated like scum to be kicked about and abused. I won't go into the horrible details but it was enough to make me not want to go on living.
Baclofen ended that. It took a long time but I can now live what is left of my life. In the process I lost my job, possibly my career, nearly my sanity. I had to drug myself to get through each day for the past two years. We have been taken to court probably about 20 times or so over this. My name has been in the national press and on the internet. I have been "papped" in the street. I filed a press complaint which was successful in getting articles on the internet taken down.
None of our neighbours know about the treatment, our family know about it but some of them just laugh because they are either "pillars" of communty and don't want to be seen as stickng up for us or believe in tough love.
The bile and venom that spews out at us from our own family is horrendous. We, unfortunately, live in a snob ridden ultra conservative backwater governed by a political party out of the 1930s era of brownshirts.
The whole thing has made us not want to go out of the house. We have just taken out a lease on a house on an island a few thousand miles from here and by the end of the summer we hope to be out of this horrible backward place.
Yes, baclofen does work. Once a pickle, now a cucumber!. You can get your health back. But if no one knows about it, you end up living in a toxic environment. It is then that you see people as the ignorant bigots that they are. Professionals who laugh when you describe the medication and treatment, can't get their heads around it, think they know better and go off to get a Pinot Noir to have a laugh at home about what you have told them.
This is not a pleasant fight. I feel as though I am throwing grains of sand into a ocean of ignorance, stupidity and savagery when I deal with most people.
So, when I hear people going on about somnolence, please excuse me for my rants but for some people having a job at all would be something, being able to get out of bed rather than have two week long binges, broken bones and the rest. How lucky a person is if they can use a computer.
The only way out is to get out of here, get away from this place and start again. As I have said before, what is the point of being cured if people still treat you as though you haven't because there is no cure...and they think you are a fool for suggesting there is one.
Until this hits the press and this cure for baclofen becomes as widely known as penicilin, we will all suffer from the ignorance and prejudice of those who don't care, can't understand the science, don't want to know, or are just plain idiots who think it is funny to bully people who have an illness.
Nothing worked until first a bit of vitamin therapy helped but that was exhausting, expensive and just didn't seem to be good enough. It was like being on a treadmill.
Eventually we heard about Dr. Ameisen and read the book, got the medication and after years of trying to get it properly prescribed because my job prevented me from ordering on line, we got a doctor who now prescribes properly, understands the treatment and said that other doctors should know about this. He even encouraged me to write to the government urging them to tell doctors about it.
All through this ordeal which lasted 10 years we have had opposition, skepticism and every kind of damaging, destructive behaviour from people who should be doing something about this illness.
Instead of being treated as people who are responsible members of society, educated professionals, we have been treated like scum to be kicked about and abused. I won't go into the horrible details but it was enough to make me not want to go on living.
Baclofen ended that. It took a long time but I can now live what is left of my life. In the process I lost my job, possibly my career, nearly my sanity. I had to drug myself to get through each day for the past two years. We have been taken to court probably about 20 times or so over this. My name has been in the national press and on the internet. I have been "papped" in the street. I filed a press complaint which was successful in getting articles on the internet taken down.
None of our neighbours know about the treatment, our family know about it but some of them just laugh because they are either "pillars" of communty and don't want to be seen as stickng up for us or believe in tough love.
The bile and venom that spews out at us from our own family is horrendous. We, unfortunately, live in a snob ridden ultra conservative backwater governed by a political party out of the 1930s era of brownshirts.
The whole thing has made us not want to go out of the house. We have just taken out a lease on a house on an island a few thousand miles from here and by the end of the summer we hope to be out of this horrible backward place.
Yes, baclofen does work. Once a pickle, now a cucumber!. You can get your health back. But if no one knows about it, you end up living in a toxic environment. It is then that you see people as the ignorant bigots that they are. Professionals who laugh when you describe the medication and treatment, can't get their heads around it, think they know better and go off to get a Pinot Noir to have a laugh at home about what you have told them.
This is not a pleasant fight. I feel as though I am throwing grains of sand into a ocean of ignorance, stupidity and savagery when I deal with most people.
So, when I hear people going on about somnolence, please excuse me for my rants but for some people having a job at all would be something, being able to get out of bed rather than have two week long binges, broken bones and the rest. How lucky a person is if they can use a computer.
The only way out is to get out of here, get away from this place and start again. As I have said before, what is the point of being cured if people still treat you as though you haven't because there is no cure...and they think you are a fool for suggesting there is one.
Until this hits the press and this cure for baclofen becomes as widely known as penicilin, we will all suffer from the ignorance and prejudice of those who don't care, can't understand the science, don't want to know, or are just plain idiots who think it is funny to bully people who have an illness.
Comment