My husband is 67yrs of age, and has had PSP for nearly 4yrs.
There is no support here in Torquay, South West England, and I wondered if there was any carers out there in this area that would be interested in meeting up to support each other.
I am always looking on this forum, and I think you are all angels as it so difficult to get through even a day caring for loved ones with this unbearable disease.
I have had great support from Marie curie nurses who do awake nights for me from 10pm until 7am a few nights a week if they have anybody spare, at least I get a good sleep, and can carry on next day, they are a godsend and I am sure they are all handpicked.
Love and luck to you all.
Written by
skye07
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Everyone in the UK who cares for another person is entitled to a carers assessment to find out what their needs are and how they can be supported. If you have not already done so you must contact your local social services for help and advice. I did most of my research in line first and then tackled the rest afterwards.
The care company we use are called Bluebirdcare, they a worldwide franchise so there maybe one on Torquay and they are excellent.
If you contact the PSP Association there should be a Specialist Care Advisor who covers your area, I'd think. They would know who else in he area is a member, either living with PSP, carers or former carers and coul possibly help establish a support group for the area. Myself and another volunteer have recently set up a support group for the east of Scotland area - 2 meetings so far. if I can be of any help, don't hesitate to get in touch.
Hi skye07,I'm deeply sorry,your husband has this awful disease at 67.Do u no wot stage he is at?What a shame Torquay hasn't got a support network as u certainly need it.I am replying to u as I've got so much experience psp,as both my parents had this disease yes I did say both.My dad died at the age of 74 in 2009 and my mom also 74 died April 14 th 2013,I am totally devastated losing mom n dad to what I can only describe as the worst experiences in my life.As you are probably seeing yourself it takes over everything,the swallowing the blindness to the whole body just took over speech non exsistent.I pray for u that u get all the support u will need and that ur husband gets every care he so much deserves,Im from Birmingham and we Dnt have a support group as far as I'm aware the nearest to me was a place called towcester in Northampton bt 60 miles away,I did Fone them a few times and they were gr8.I would be happy to answer ne questions you mite have my name is Wendy wishing you all the best xx
The PSP Association is holding a regional forum in Launceston on the 9th April. This is an opportunity to get to meet other people affected by PSP and CBD and hopefully will be the start of a local support network. Invitations will be going out in the next week, but if you don't hear anything please get in touch with me directly. Everyone is welcome. This is part of a programme of events across the country throughout the year, (Birmingham in June) specifically aimed at where there are no support groups. We have a new Specialist Care Adviser for the South West area who has started this week and I am sure will be in touch with everyone in due course
Hi Skye, I am from the same area and you should be eligible for some help. You need to ring a lady called Heather Holloway, her number is01803869263. She should come and do an assessment for your husband. I'm in a bit of a different position as Ive moved into my mother in laws anex which has a separate postcode and means that we can say J is living on her own. In this case J then receives direct payments which can pay me to care for her and I can get help in also. Its not much which is why we moved in and I took a low pay but it means everybody gets respite. But you should be able to get help. I advertised for carers on gumtree and got a really good response. We have 2 carers from there now. It is cheaper to get your own pa from someone self employed than using agencies plus you get to chooses your own staff and not given who the agency wants to give you. You also really need to play things up and say you cannot cope! They help people less when they have family around, another problem we have faced. I have been fighting with them for the last 8 months but have finally got the top amount of money J can get. I dont know if you need equipment to help in the house but one of your local OT's should be Launa Maunder 01803860586. You should also get all of this for free. We have a stand aid, hospital bed and other bits like slide sheets. Great idea to help each other out, I would but were a little too far away i'm afraid. If you get direct payments eventually another person who can help is a man called Dan Hodges 07970994534. He helps people get staff and has lots of usefull ideas. Just keep ringing people and bothering them and be strong. Good Luck!!!
Sorry, we live in Somerset, where there is a new group just started up. I really glad Marie Curie is helping you. My daughter works for them and is doing some great work for people like us who need help. So while I wonder what I or S (my husband who has PSP) did wrong in a previous life, I know I have have provided the country with someone who is making a big difference in people's lives. I am very proud mother!
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