Well said Mrs D....

I think you are dead on with your points mentioned, and i think the most telling one is FEAR - people are afraid it may happen to them - they are afraid of the unknown, the different..... I've met people who thought they were going to catch PN.....

My fam is completely unsupportive - useless - to me during this battle - the sicker I'be become they worse they are.... its easier for them to pretend all is well with me, the everyday issues others take for granted just like getting rides to appts, etc are not available from them ...they think they should not have to nor will deal with this...... they dont want their worlds disturbed...

I think fam is the toughest to get past for us is that the people we expect first to help us may be the last that are there for any emtional or physical help as we expect them too - and its necessary for our own sanity to accept this .... I expect nothing at this point from fam - they are always too "BUSY" to do a thing or even drop by... and are not going to change - and as the disease progression and becomes more obvious, the weight loss, the wheel chair, etc.... just scares them more. I think as patients we need to realize that the people we expect help from first in such situations are sometimes completely incapable of providing it at all.

Empathy is also a very important trait that many dont seem to possess at all any more.... maybe because the world, while getting bigger overall - is getting so small for those growing up in it - and until something happens directly to an individual when they need to depend on the kindness of others - have no capacity to understand.....

My friends have almost all moved way out of the area - but when I do see them they are very caring and helpful - but this is not often at all as they live all over the map - having them drop by for visits when they do come to town is wonderful, and no, we dont talk about my illness for most part - its pretty obvious with one look at me - and I know they would be helping out more if they were in the area - but again, physical proximity is essential for some things!

I've learned to reach out to others in the community, volunteer groups, etc.. who are caring empathtic people... these people are special... and as far as family goes, expect nothing along the lines of any type of support - wishing otherwise is just frustration... Being ill we have limited emotional and physical strength to start with, and wasting it on people arent going to change is well, a waste.... and detrimental to us....