The Les Turner ALS Foundation is one of the longest-serving independent ALS groups in the country. For over 40 years, we have taken an individualized approach to ensure each person living with the disease receives the best quality of care and access to the most promising therapies. We treat each person like family, supporting them every step of the way, and provide their loved ones with answers and encouragement.
Our Les Turner ALS Center at Northwestern Medicine is led by the most well-respected and successful clinicians and researchers in the field, advancing vital care and research in pursuit of life-enhancing treatments and a cure.
It really depends on the progression of the disease, and with ALS the cure could be right around the next corner, so holding on to it is one of those things that one can hope for
Even with a ventilator, complete muscular atrophy is inevitable with ALS if pneumonia doesn't kill you first. You can still choke on your own saliva which can be fatal. You can't scratch your nose if it itches, you can't be left alone, not even for a minute. There is such thing as outliving quality of life, even with the help of a breathing machine. That is a personal choice, and when the time comes no one should be lambasted for their decision to vent or not to vent.
wj peace I watched my uncle die from this disease. There is no cure and even on the vent the disease progresses and you eventually become what they call boxed in and well that is just not for me. I have nothing against anyone else if they want to be on the vent. I just would not want to live like that.
It is easy to say "I have nothing against anyone else if they want to be on a vent". But you are saying that in your estimation that sort of life has no value. We do not live or die in a social vacuum.
wj peace no I did not say that. WJ I am going to die myself unfortunately. No I don't have ALS. I have serious heart problems and well it is what it is. Maybe for some they see a value in being on a vent. Do I not have the right to say that I personally do not desire to be on a vent? I am in no ways judging anyone. Please don't take it the wrong way.
I disagree. As a man with a disability I am often told "I would rather be dead than disabled". It is hard not to take that personally. In the same way a person living with a vent can find your comment threatening and judgmental.Respectfully.
that's what I firmly believe in, it's not only patients decision to go on ventilator, it also has to be family's decision. Because doctor puts you on ventilator, and then what? You on your own? No, family takes care of you at home. Unless you have enough money to hire somebody or go to nursing home.
This is a GREAT foundation Ana Pagan is my God mother and I Cherish every moment I have her. Lori has been a GREAT HELP to her. LORI THANK YOU SOOO MUCH FROM THE BOTTOM OF MY HEART FOR CARING FOR MY God mother as if she were part of your family. I can tell you are passionate about our job and we need more people like this in the world. THANKS AGAIN :)
