Pauline, from our support group, shares this:

When I was first diagnosed in 1999, no one at QMC Nottingham (where I worked, on the very ward on which I had my operation) had ever seen this before.

The pathologist brought in especially gave it a name - PMP. There was no information, no glossy pamphlets, no specialist nurses, no web site, NOTHING. I felt very alone and frightened but got through my operation in Basingstoke thanks to Brendon Moran and his wonderful team.

I had just lost my husband to CJD IN 1998, so had to "go it alone " when I had my operation. I made my will, made arrangements for my funeral, even bought a dozen pairs of glam PJ's as I had no-one to do my laundry.  I never wore them, I lived in hospital gowns and I was home in less than two weeks. Things are so much better now, PMP is not a life sentence. Never give up hope.