My experience of MND is that of an ex-wife to a courageous man who was diagnosed with the illness towards the end of last year. My ex-husband has always put his own needs last and currently finds himself in a position where he needs support from others...
He takes one day at a time and is a constant emotional and physical support to his children who are young adults.
Two of our children live with him. He is the 'caretaker' because of the stoical and generous-spirited man that he is.
As an ex-wife of someone with MND, I have had to put my needs as a parent after my children's and after those of their father. This has been difficult and demands a completely unselfish approach, which I do not always feel equal to, since our divorce a year ago.
The children are struggling with coming to terms with their father's illness and need emotional support from me. My ex-husband has always put his own needs last and currently finds himself in a position where he needs support from others, not only with the emotionally, but also physically as his functioning deteriorates.
It is hard to witness physical wasting in someone who was previously robust and who has always been emotionally supportive of others. No matter how surrounded a person is with support from family and friends, it must be an individual struggle coping with the illness.
I have only the greatest admiration for him as he copes daily with the disease.