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Sorry Lenore, it is awful and I understand your bitterness. I have even read that there was some kind of link between a very high BMI (verging on obesity levels) and longer life for post-diagnosis PALS, but I am not sure if that was more about keeping the weight on in the face of progression...

i am quite sure living healthily is a good idea for everybody, regardless of whether they have ALS, but in the course of online research I have repeatedly come across at least anecdotal evidence that many PALS prior to diagnosis were notably slim, fit, active people - indeed, lots of athletes...

My sister committed suicide after a lifetime of mental illness. One of her diagnoses at one time was schizophrenia. Like myself, she shared the same father (but different mother) from my brother who has MND.

New research just published, led by a team at Trinity College Dublin, has found a clear genetic link between ALS and schizophrenia. The research was partly prompted by earlier studies in 2013 which found that ALS sufferers were more likely to have lost family members to suicide, or to have...

Kay, thanks for kind thoughts. My brother is in the UK. There are virtually no clinical trials there as far as I am aware - at least that is what he has been told.

Thanks Kay, for caring. My brother was diagnosed with this disease last July, he was 39, married, with a toddler. Now they have a new baby, just born. He's a super cool guy, young, funny, kind, a devoted dad and husband, self sacrificing, and politically aware - as in he cares about people and...

Thanks Laurie, yes we are in frequent touch online, not so much on the phone as my brother doesn't like to talk about it in front of the kids and until recently didn't really discuss it in front of his wife either, he is very protective of her. But we send videos for the kids and photos. And I...

Thanks for your kind words. Unfortunately I live abroad. My brother lives with his young wife and 2 very young children. His wife works full time and is the breadwinner. They are trying to organise alternative accommodation. It will mean uprooting the family, kids changing schools, new area...

Hello all, in the past 4 weeks my brother has gone from walking without help to needing a cane and now to needing a wheelchair - although he doesn't have one yet as he can't use it in his current home. His arms are also now getting weaker, and he's completely exhausted. He's got to move house as...

His breathing so far is completely unaffected. I have just found out he is seeing his consultant in 3 weeks so hopefully we will get at least a bit if an update then. Thank you so much again for your input. I take heart from what you say.