This site is truly wonderful. It lets us rant and screem, gives us all the advice and support we need, and to top it all we can read wonderful words from Georgepa and others. We enjoy hearing what life is like in far off countries and above all we enjoy the wonderful sense of humour ourPSP sufferers .still have. THANK YOU ALL.
Love maddy.
I agree. I start my day with this site and hold on to it as long as I can. This has the makings of a hard day so I will probably sit by the computer and read posts as long as I can.
Jill
Costa Rica
Hi Jill, I think a lot of us do this, I know I do, well I start just after my breakfast and if I'm not careful the morning as gone!
Maddy, you are right, with out this site I would not be in as good as postion the I'm in, even with it, at the moment I'm struggling! Why is it, one day is fine, the next, down in the dumps with no way out? Even today, I have just cleared out all our wardrobes(!!!!!). A job that has needed to be done for a couple of years now, I should be flying, but still feeling very flat!
Have HEALTHUNLOCKED been playing with this site again? I can't re-read what I have typed. So apologise, if things don't make sense, or typo errors!!!
Lots of love
Heady
Hang in there Madeline....Rollie
So true. I look on the site every morning. I want to know how everyone is coping. It feels as if I never have a grip on everything. It helps me to feel normal !
Love to all. Jean
The prime benefits of this site are that it gives PSP sufferers and carers and former carers a sense of community - the confidence from knowing we are not alone and can learn from each other - and, sad to say, it provides more information about the disease and its impact on all concerned than is available within the medical profession. In my experience, GPs and neurologists rarely come across the condition and have no idea of the day to day, week to week, month to month suffering of its victims. One neurologist, leafing quickly through my wife's dossier, actually asked me why she was having difficulty swallowing!
When people criticize social media, I tell them about this site and bless it.
Chrisopher
Hi all......Roy went to the Hospice day care today....wasn't sure if he was going....he was upset this morning( having a down morning) saying that I don't want him around and that is why he had to go. It made me stop and think how I might feel if I was in the same position asRoy is. It's ok everyone telling me that I should have some time to myself and that he should go to the centre to give me that time but would I be feeling like Roy? He did go in the end and said it was fine and I had a rare easy day!
Also I wanted to tell you about Roy's appointment with the Neuropsychiatrist yesterday,
When asked how he was feeling Roy was actually able to say quite perkily"I am fine!" And I sat there shaking my head because he had a terrible day!
I sometimes think the doctors should come onto this site and read about the lives of the CBD/PSP sufferers and carers, they might learn a lot!
D x
To all sons & daughters of PSP sufferers
Please God bring him home to you.
An amazing week at sea! 
Making memories 
