This is torture - it is so cruel.
NanBabs2 hours ago
P had a `cardiac episode` on Friday. Very obvious to me as soon as I walked in to the nursing home. Since then he has stopped eating and dri...
Marg528 hours ago
Good morning all well today we are going to try one more doctor, a new neurologist for Charlie. I had reached out a few months ago and Deb a...
3 Replies1 Like
The PSP Chronicles Sprin-ter 2018
daddyt20 hours ago
Hello PSP family. I can't seem to post the link. If you're interested in reading:
10 Replies2 Likes
Now out of pain
Caz49a day ago
Sadly I'm writing about the passing of my beloved TJ last Thursday 17th May, 2018.
After another hospitalisation for suspected aspiration pne...
17 Replies2 Likes
Changes in Eyesight and Challenges
Cuttercata day ago
Charles is having severe changes in his eyesight. Has lost peripheral vision and can only see me at an arms length. He can't really see TV...
Helen119a day ago
I have no hoist
Colin unable to sit up without flipping backwards and I am unable to get him out of bed to the commode.
My problem is...
Clinical trial information
katras2 days ago
This is my first post. Diagnosed with Psp a year ago. I’m being screened in 10 days for the clinical trial sponsored by AbbVie & would like ...
Does Mum need to know?
Sarah19722 days ago
Since PSP was suspected (now confirmed) Mum has not wanted to know what is going on.
Had she had cancer then I suspect that she would have b...
9 Replies1 Like
Advice from Millie my cat with unforeseen consequences
Georgepa2 days agoPOPULAR
Since my foray into dog world Millie has been unduly attentive .She greets me each morning with loud purrs and then plonks herself on my che...
30 Replies15 Likes
Helen1193 days ago
Hi, wondering if anyone has experienced their carefored one feeling very unstable while in bed or sitting in a chair. Colin keeps calling me...
Carer for mum with CBD
Bobbiejo214 days agoPOPULAR
Hello I'm quite new here never a post up. My mum was diagnosed with CBD last year with having symptoms atleast a year before that. I've been...
Has anyone else heard that the qualifying life expectancy for fast tracking CHC application has reduced from 6 months to a matter of weeks?
Willow_rob4 days ago
I am pushing for CHC funding for my wife. When I raised the matter of fast tracking her application because she has deteriorated very quickl...
Karynleitner5 days agoPOPULAR
Does anyone have any advice regarding the help of anti depressants with PSP/CBD. ?
When Dan was recently examined by a psychologist from VA h...
49 Replies2 Likes
A new study
Mamapiggle6 days ago
I have been invited to attend Leeds general infirmary research dept to take part in a study which is taking place all over the country! Fing...
6 Replies4 Likes
Update on Michael...CBD
Mikey123457 days agoPOPULAR
Having read Cuttercut's post, I am tearfully moved to share. Today I signed the papers for the love of my life to be placed on hospice. CB...
51 Replies20 Likes
catemac7 days ago
Hi wanted to ask if anyone else has experienced hiccups that wont go away, my husband who has the dreaded psp plus type 1 diabetes was in ho...
5 Replies1 Like
New cookbooks for swallowing problems/dysphagia
LostinHeadSpace7 days ago
NPR has an article today about new cookbook(s) of gels, foams and purees for people with swallowing problems, by Diane Wolff, and another by...
2 Replies3 Likes
wheelrace7 days ago
many thanks to you kevin people are now falling over each other to give us help you will never know how grateful we are I followed your advi...
12 Replies13 Likes
Helen1197 days ago
I’ve been told it’s time to have a hoist for Colin, as he is struggling sitting up and bending his legs, so making it very hard for m...
14 Replies2 Likes
Alankar8 days ago
I have surplus Boxes of Thick It powder 36OZ Yellow label expiry date 2019 - 2020. Which we are in the process of disposing @ of Rs.3...
Be the first to reply3 Likes
PSP and commercially purchased DNA kit(23andMe).
Drbotto8 days ago
My wife passed from PSP. An interesting thing is that about 3 years before we noticed any symptoms we purchased a DNA kit from 23 an Me. W...
17 Replies3 Likes
Are we ever really ready?
Cuttercat8 days agoPOPULAR
Given this week's news I am sadly thinking "are we ever really ready?" Charles is slowly declining but the coughing with eating is becoming...
35 Replies11 Likes
The wisdom of children.
Javan8 days ago
A friends young daughter explained psp/cbd as a neuclear bomb to the brain. First the bang then all the following problems. Oh the beauty of...
2 Replies4 Likes
Dickenson29 days ago
I have been hoping to have John home and have over the last nine weeks tried to get a package in place. Two Carers and an OT came last Thur...
Information regarding Cambridge hospital for your loved ones UK in regards of medication
Samila9 days ago
Hi I was lucky to attend one of the support meeting and meet Martin, one of the very kind caring attendance who is looking after his wife ex...
7 Replies3 Likes
CHC - Angry on a friends behalf
Satt201510 days agoPOPULAR
A friend of 77 and her husband (maybe a couple of years difference) He sadly has Psp
47 Replies3 Likes
Holiday with mum
Elisa6710 days ago
My mum has PSP that was diagnosed last year but this was after many appointments over previous years to establish reasons to her deteriorati...
12 Replies4 Likes
Brain shrinkage/loss ?
NanBabs10 days agoPOPULAR
One of the senior carers in P`s nursing home returned from a training session and said she had spoken to the Parkinson`s nurse about PSP. Th...
23 Replies3 Likes
LookingafterDad11 days ago
Some of you read my blog, here are my latest posts.
I find writing so therapeutic & I was going to stop writing after my dad died. However, ...
4 Replies5 Likes
Dealing with the loss of my father
PMoore11 days agoPOPULAR
My Father passed away on Thursday morning after a long battle with PSP.
He was in a nursing home towards the end but we couldn't have asked ...
37 Replies20 Likes
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