decline

Three years ago, I was diagnosed with ALS, early onset, at Yale New Haven Hospital. I was 49. The neurologist immediately said "don't try antibiotics, they don't work and they just make you sick". He gave me a prescription for Rilutek and sent me home to die. My husband and I immediately began...

Hi, I'm hoping for some input from caregivers of people who have had bulbar ALS but chose not to have a feeding tube. Our situation is a bit different in that my 72-year-old mother's journey began with frontotemporal dementia about 2 years ago, and then bulbar ALS symptoms arrived about a year...

My father has ALS. He has been diagnosed for only about 6 months but we have known for about 3 years that something was very wrong with him. In the last year his decline has been very severe. My stepmother walked out aprox 2 weeks ago because she does not want to take care of him anymore. (I...

I am new to this site and am very grateful to have found it. My 53 year old brother was diagnosed with ALS in May of 2012. We were close as children, but not so much as adults. His diagnosis has brought us closer again. In the past two months, he's lost most of his strength in his arms and...

My POTs specialist is sending me to a neuromuscular doctor for possible small fiber neuropathy. I see him tomorrow; but lately I have had muscle achyiness in my left shoulder all the way down into my left wrist and sometimes left fingers. - they seem very weak byt more so just achy like i just...

Hi all- My name is Jamie, and I just joined this forum and will go through and read. I've just started this process of educating (un-educating/re-educating?) myself about ALS. My mother has been struggling with all those non-descript symptoms for about a year. I urged them (my parents) to...

Just a quick note to let everyone know Bill's battle with this horrible disease is coming to an end, and he will soon be in a better place. He is in a hospice house which is a wonderful facility. We had to take him to the hospital last Sunday and from there he was brought here. On Monday he...

Christmas has left me empty. The season for joy and happiness has been haunted by the thought that this might be the last. Michael has gone down hill in the last six months...He is dependent - although not all day - on the ventilator. It has gotten into his digestive system - so food creates all...

Hi, My mom has been diagnosed with mnd last September but has had a rapid decline since then. Her speech is extremely slurred, she has lost the use of her right hand and arm and she is falling up to 6 times a day now. Her left arm and hand are very weak and her back is very hunched. We don't...

That's more of a question than an answer, Some days are just too hard. I do need to learn to be at peace and go with the flow of whats happening to me, and yet at the same time i want to fight it - but that too, can be exhausting - too exhausting. It does not take much these days to 'knock' me...