Thanks,for that website, scared s**tless.
ALS is extremely difficult to deal with not only for the patient but for the rest of the family as well because there is no cure for ALS as of this date. The only thing one can do is treat the condition palliatively.
My uncle German was an extremely dedicated professional. He was an excellent cardiologist. He fit the definition of an "exemplary doctor". He studied general surgery at Columbia University in New York . He did another specialization in thoracic surgery and cardiology at the University of Miami. Upon the completion of his studies, he returned to Mexico city to practice as well as teach. When my uncle completed his studies, he was offered posts from many well reknown hospitals all across in the US but he declined them all. Even though he could have earned the big bucks in the US, he wanted to be near the "
familia" in Mexico. He became a doctor not only because he grew up with a very ambitious mother and a household in which all his 5 brothers were doctors but chiefly because he loved the profession. The fact that he would earn less money in Mexico didn't bother him. He was a simple, honest and pious man. He was a workaholic and despite being divorced, he was a very devoted father. He was also a very good violinist and swimmer. As soon as he started to lose the ability to participate in the activities he loved most (his career and hobbies), he was extremely devastated.
In 1997, my uncle started noticing motor problems with his hands as well as speech problems and dysphagia. He eventually lost control of his emotions- and would cry or laugh for no reason at all. ALS attains the limbic system as well. Towards the end, he could not hold his head up anymore so he had to wear a neck brace and he experienced a lot of difficulty eating , talking or swallowing. He told the rest of the family that if he would ever be unable to express himself and was extremely ill, his request was not to bother sustaining his life. Around a year and a half or so after the ALS diagnosis, he fell down some stairs and never regained consciousness. He was on a respirator for a while but eventually the family decided to take him off the respirator. He died on Christmas day 1999.
My uncle was an extremely proud man. He never troubled anyone with his problems. The last thing he wanted to do was depend on someone for his basic needs. His daughter, who was working on her doctoral thesis at the time was having a difficult time caring for him so my mother spent some time nursing him. It was during this very time that I was living away (but in the same city) from home for the first time. I was in my second year of dental school- reknown among dental students ( at least where I went to school ) to be the "nightmare year". During this period , many terrible things happened during my life- my brother was hospitalized for one month as a result of complications of peritonitis which was a result from appendicitis. Apparently,according to the doctors, my brother had a close brush with death if he hadn't had the appendix removed when he had. Furthermore, my mother was extremely emotionally fragile during this time. My boyfriend also broke up with me during that period. A few other upsetting situations which I don't care to mention happened that year as well . It was the worst year of my life. I had to take a year off from school. After that devastating era in my life, it's amazing that I still have faith in God!
I sometimes wonder what it was that triggered the illness. Was it the emotional devastation he felt when his wife left him and took away his kids to the US without prior warning? Was it the toll of stress from working too hard? Was it the pollution in the city? Was it exposure to nosocomial infections that hospital workers can pick up inadvertently in the hospital environment? After consulting various sources of information, it doesn't seem to me that the condition was inherited in my uncle's case as far as I know. Then again, I don't recall hearing about him undergoing a genetic screening. I guess I'll never know.
The following link contains the site of the journal (written in spanish) dedicated to my uncle German. You have to click on "mostrar articulo (pdf) " to view the two page memoriam. He led an exemplary life. He is someone I have looked up to. He died the way he lived- with dignity. The last thing he wanted was to be a burden to his family.
http://www.medigraphic.com/espanol/e-htms/e-circir/e-cc2000/e-cc00-5/em-cc005f.htm