The first meeting of the Brentwood PSP Group

Have just returned from the first Brentwood PSP support group meeting and found it very useful as it made me realise that families have a varied experience of support from local agencies, depending on where they live. I hope many more will attend at the next meeting, the last saturday in Oct. 2:30 to 5:00. The group might be able to put pressure on agencies as well as have a voice in the community to raise awareness and improve resources.

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  • We too have just returned and found the meeting very useful and enjoyed meeting so many new people. Best wishes to all of you

    Beth, Ronc, Claire and Dominic.

  • hi,

    i two have just returned from the support meeting in

    brentwood and i must say i found it very good, great

    people, well run , and a great venue ,lots of things to

    talk about and it was great to be able to put a face to

    the name and im looking forward to the next meeting

    next month, hope to see lots of you in cambridge

    next saterday best wishes to all of you,

    ray

  • We really found the meeting useful and enjoyed meeting everyone - its nice just to talk about our day to day experiences with people who understand.

    Lovely to see Jenny again - and thanks for the cakes Jenny the kids loved them.

    Claire

  • It's great to hear so much positive feedback from those who attended the Brentwood Group.

    The Cambridge Group takes place on Saturday, October 1st, 10.30 at Trumpington Village Hall.

    A Northamptonshire group is planned for early November, and we hope to establish more groups over the next few months in other locations.

    Anyone interested is helping to set up a group please get in touch with me on either 01327 356130 or at cameron.wood@pspeur.org

  • It was a good afternoon for those of us involved with PSP.

    Great to meet so many cheerful and positive people with bags of common sesnse.

    Certainly helped me and my family.

    Good to meet Ray... pity about the football club!

    Wonderful to see Jenny again and look forward to sharing a glass or two soon when Ronc's next down from Cambridge.

    Thanks to all the organisers...feel sure it will be the start of something good.

    Beth xx

  • hi lizpeel,

    hope your keeping well it was great to meet

    you yesterday im glad you enjoyed your self

    it was a very interesting meeting sham man utd

    could only manage a draw hope to see you at

    the next meeting take care,

    ray

  • Hi everyone who attended the meeting yesterday, glad you enjoyed it!!!! I must say I was exhausted when I got home.

    It was lovely to meet everyone and I look forward to seeing you all, and I hope more at the next meeting.

    It was nice to meet you Ray. Claire, I am glad the kids enjoyed the cakes, saved me wearing them!!!! And Beth, look forward to that glass of wine ..... or two, I will bring a bottle and make sure I get the 387 bus!!!!

    Ronc, hope that your meeting on Saturday is a success, I will be thinking of you.

    Will be pleased to chat/keep in touch with anyone who wants to pick my brains, if they can find them. Either leave me a blog on this site or contact Cameron Woods and he will pass on any messages to me so that I can reply to you.

    See you all at the October meeting.

    God Bless and Take Care All.

    Jen XXXXX

  • hi jennifer,

    hope your keeping well i do hope you have recovered

    from saturday it was great to finerly meet you i would

    just like to say a big thank you to you for organising

    the meeting i think it was a big success and i look

    forward to attending lots more you take care of your

    self,

    ray xxx

  • Hi Ray

    Have read so much about you that it was nice to meet you in person. Are you going to the Symposium? If you are I look forward to seeing you.

    Take care

    Jen XXXX

  • hi jenifer,

    hope your keeping well yes i am going to

    the symposium and i am looking forward

    to seeing you and im looking forward to

    meeting other people with cbd as there

    isnt meny about unless they are hideing

    from me lol take care and i will see you on

    wed,

    ray xx

  • Hi Jenny. It was good to meet you and I am so grateful that you took the time to talk to me in the lobby area during the meeting on Saturday about your husband Ray's PSP and about my darling Mum's battle with PSP. It is so helpful to be amongst people who actually know what PSP is and what you are up against. I will call you or email you in the next few days if that's OK Jenny to pick your brains about a few things. Thanks again for talking with me and I really hope to see you again in the near future. Kindest regards, Catherine xx

  • Hi Cathy

    Glad I was of some help to you. Drop me an e mail anytime or give me a call. It is always nice to know that someone does understand about PSP and that you can sound off to someone who has been there.

    Jen XXX

  • Thank you very much for organising this PSP support group. It really does help to make you feel that you are not alone - in my case it is my Mum who has PSP. It really was a very useful experience and I will certainly be attending the next meeting.

  • LizPeel 59 minutes agoDelete

    Dear Kathy

    It was lovely meeting you this afternoon and were so sorry to hear of all your problems with care for your mum.

    Keep your chin up ... we're all with you........

    We loved the poem.

    See you again ,we hope

    With love

    Liz, Ronc , Claire x

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  • I am pleased that everyone found the meeting of value.The feedback sheets that were completed were very helpful.It appears that access to services is a common problem and awareness of the condition amongst health care professionals and care staff is limited.Hopefully these are areas that we can address at a local level.We will arrange for the speakers, that you requested, to come to future meetings.A neurologist,PSP Specialist nurse and speech therapist were all requested.When I have got the dates arranged for each speaker I will post these on this site.

    Thank you all for coming and making the meeting a success.

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