Hi, My dad has PSP. He is very unsteady on his feet and walks with a frame but he does fall over a lot. My dad Ian lives in a town called East Grinstead about 20 min from Gatwick airport. The only support group that we can find near by is one at the Queen Victoria Hospital but it is a Parkinson's support group. He went this month and he fell over. My mum was told that he fell into another person and because of that they are concerned for the other members of the group! They have now informed my mum that after a group discussion they feel it is best for my dad NOT TO attend any more meetings! How dare they! My mum was not happy at all and aired her views, to be then told well humm ok maybe if you came and stay with him then it might be ok. This is once a month that my mum gets a break from looking after my dad and now they are saying my mum has to attend the meeting just so my dad can go! If you steady my dad he is fine on his feet, so why can't they just help him to the toilet etc???? Are they telling me people with Parkinson's don't fall over. I am so angry.
So if you do know of a PSP support group that is near, please could you let me know. Mum said they have made him out to be a naughty little school boy!!!!
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hi sky still angry mate i expect and your mum i would have thought that a parkinson group would have been used to people having a few falls here and there and would have been prepared for this
i am sorry that i cannot help you with another group near you because i live at the other end of the world but your right your mum needs a break . and the group never exactly welcomed you with open arms did they thats a great shame as we as psp sufferers have enough to put up with with out all of this drama anyway mate take care look after your dad i wish him well and your mum i hope someone a bit closer to home has an answer for you peter jones queensland australia
Hey Peter, Many thanks for your reply. Yes totally you would think they would be prepared and used to the falls! It's baffling really. My dad likes to go too and now he feels very unwelcome. I will be having a word with them next month! Thank you for your wishes and I wish you all the best too. Say hi to Queensland for me I was there about 10 years ago, great fun. Take care Esther (sky)
I wish there was a support group in Sussex too! My parents live near Gatwick Airport too - Haywards Heath area. I'm sorry to hear about your experience. My dad has PSP. A group in Sussex would really help, especially for my mum to be able to meet other individuals in a similar position.
I have just received this mail from PSPA_DebbieB PSPA 34 minutes ago: she wrote:
Having read your blog, would you be able to give the PSP Association helpline a call on 0300 0110 122 to discuss yours and your mom's needs and see what can be done to help. The only Support Groups around your area are Camberley and Wimbledon, which may be too far for you or your mom to travel. You have outlined a need, which we will look into. Thank you.
Best wishes,
Debbie
You might want to give them a call too. I'm going to pass this onto my mum.
I wish you all the best for your dad.
My friend is running the London Marathon in April for PSP. I have just spoken to the local paper to see if they can help push for awareness and sponsors. If you know of anyone who would like to sponsor could you send them Mandy Just giving page: justgiving.com/Mandy-Regena...
I'm so sorry to hear this! I live in East Grinstead but we didn't have a support group because by the time we moved Mum into a care home in the town it was because she had become immobile. I have spoken to various other people who have had relatives with PSP/CBD but no-one has mentioned a group.
Thank you for your reply. I'm sorry to hear about your mum. PSP is a horrible disease and I hope soon they find a cure. Debbie from PSP has asked us to call her so I will see what will happens there. All the best to you and your family.
i am so ssorry thamthte parkinsons group r not helpign you
they are grea twhere i live - i often make an entrance and fall just going into the hall as the door is difficult to open and itsi a joke n o w that i do htsi
ht
they r all v friendly and helpful and understand the problems i have with my speech as well
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