Log in
PSP Association
5,901 members8,037 posts

Newbie to this site

Hi, I am new to this blog! I joined to get support from others whose loved ones also suffer from CBD. My MIL has been battling this disease for 5 years now. She is 77 and completely wheel chair bound. Unfortunately she is not able to move at all on her own any longer. She has a live in nurse whom she has connected well with. She has a couple of hoists and pillows that are used to move her. Sadly, She lost her ability to speak but can communicate through a technological device that scans her retina. She types out what she would like to say, then it projects sentences out loud. Thank God for this!

I am amazed my MIL is still able to swallow pills and such...however, her food is puréed to a liquid consistency which she is fed.

This disease is horrible!!! What bravery she exhibits each and every day!

5 Replies

Hi, Kathyb. Your MIL sounds wonderful, and it seems she is receiving the best care possible. Good for you and your spouse. Best wishes, love, ec


Hallo, Kathy. Yes, what bravery and what a privilege to look after her. I used to tell my Mum I thought she was brave but she would not have it. The most I ever heard her complain was when she said she was "cheesed off". English understatement and immensely brave.

Wishing you both every strength as you go through it together.



Hello Kathy and welcome,wealth of information here, we also except ranting screaming, crying .Ask away ,I'm sure someone here will be able to guide you through your experience.


1 like

Hi Kathyb07

Yes, this disease is horrible and the bravery of those who suffer is unbelivable.

She is certainly very fortunate that she can use an eye tracking device to communicate. For most folk eye movement is one of the earlier things to go.

It is hard for carers too. I do hope you are looking after yourself as well.



1 like

My Chip has CBD he can not move now either. His mind is going fast now I just spent over two telling him how we get him in his potty chair. We have been doing this for over two years now. He also didnt know where our doors are,we have lived here for 35 years. He keeps going over and over the same thing. It does take patients for this. Some times he cant find his words but other than that he speaks and can still eat but not much. Hope all goes well for you and your wife.


You may also like...