PIP home assessment

Hi everyone
I had a home visit on Thursday this week . It was a nurse, and the first thing she said as she saw me and sat down was 'i don't usually have to come and see patients with your illness. 
I have a very rare illness called Progressive supranuclear palsy , which is very life shortening .
Anyway she was very polite and went through the list on the form, it took about 1 1\2 hrs and I was exhausted by the time she had finished.
I am currently on a lifetime DLA , higher rate allowance, and am convinced that my support will be reduced even though I've had a specialist confirm my life expectancy of less than 3 yes remaining. It is a worry as I would not be able to pay for my private home speech and physiotherapy sessions which I have weekly. I have these to extend my quality of life plus increase my life expectancy as I have young children.
I will post on site when I receive their decision. I do know that PIP are cutting benefits with Parkinsonian type illness's especially the care component.