We have just had a group meeting, kindly arranged by Satt, Amanda in the UK and a couple across the pond also got together, which is absolutely wonderful. Although I wasn't there, I know all got a lot of comfort from them.
In the UK, the PSPA run regular group meetings all over the country. (I think there is something similar in the USA). Some are struggling to survive due to lack of interest. I would like to think that's because there in no PSP in that region, but we all know that's not true.
I know when Steve was first diagnosed I hated the idea of going to one of these groups, frightened of actually seeing what we had to face. Steve wanted to go, so I forced myself. My first impressions were dire, hated every minute, but again Steve said we had to go. Honestly, I have never ever regretted it from that moment. To walk into a room, where everyone knew about PSP/CBD, was one of the most enlightening moments of our journey. I learnt so much, which helped me cope and made Steves life so much better. I was ready for the downturns, knew about the Hospice, which saved my sanity. Even met a couple of fellow forum members.
These groups are both for carers and sufferers, so of course access is easy, plus there are fellow carers to help. Steve didn't feel a freak anymore, having this rare disease, I knew others were struggling, just the same as me. We had a laugh at the crazy things our loved ones had got to that month. Steve realised a lot of his frustrations were normal. We were both made very welcome and life had a bit of normality about it, as we weren't the only ones going through this crap!
What I am trying to say in a very long and drawn out way. Give these groups a chance, everyone made a real effort to get to London, or wherever, so why not to your local group, where the person sat next to you, might just live around the corner from you. I guarantee the first meeting will frighten you senseless and you won't want to go again, but persevere and you will get to love the meetings, nearly as much as going to the Brass Monkey.
We are in this together, so why not be together!
Sending big group hug and much love to everyone on this extremely hard journey.
Lots of love
Anne
PS. You can find your local group on the PSPA web site, or give them a ring.
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Heady
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Well said Anne! One way or another if you have any involvement with Psp you NEED to learn about it! There is also a good chance you’ll make some new, good friends! Join in, get involved, learn, laugh n cry together! The support you’ll receive is like no other! X
I agree, I used to attend the Liverpool group and learned a lot. It got taken over by some people who did not have experience of PSP or CBD and meetings became irrelevant. They left and I no longer get invited to meetings. I have been quite jealous of the Brass monkey meetings being so far away. Best wishes Ken.
I agree totally with Amanda, Well Said Ann!
Just wondering if the Brass Monkey Meeting is a get together or a meeting. Hen House was a casual get together. Organizing meetings takes a lot of effort to get them up & running & to keep them going. I admire all the folks who accomplish this mission successfully.
Lol it’s a get together, I suppose now thinking ‘meet’ is the wrong word.... we meet up, get together, and just have a jolly good time!! Everyone does as they want, sits and chats, stands and chats, drinks wine (me and Kate lol) actually we are not the only ones!! Just have a nice time, we don’t have an agenda or any of that nonsense, the day just happens as it happens x
I think the nearest one to me is your neck of the woods , we did go last year , we fund thursday was a rather awkward day for us. Saturday is easier for me . ..Brenda xxx
Our neatest meeting was quite a distance and Ben just wasn't interested, I tried to encourage him but he would have non of it. Shame as I Wouk do have met Bev and Jean way before I did. So thankful for eventually meeting folk at The Brass Monkey, the only place I I was able to share with people who really understood. Xxx
We had a local support group meeting every 3mths. There was only W and I and another married couple. When their spouse passed away W and I joined the Belfast group. Then the PSP volunteer had to retire for health reasons and unfortunately there was no one else willing to take on her role so now there is no PSP support group in NI. Why didn't I volunteer? Well we were just starting out on our PSP journey and I felt I didn't have the knowledge/experience or time to manage or help the other members who were at a more advanced stage, plus I help look after my grandchildren weekly. So this forum is my support group and what a great one it is.
Heady,such wise observation. We were very reticent at the first group meeting we went to. I was terrified at what’s ahead of me and very much in denial that it was happening. However, knowing that you are not alone and that there is help if you need it, or a shoulder to cry on is very comforting. We only meet every 6 weeks and no one imposes themselves on you. We have all got contact numbers should we need them. Also because the leader is in contact with the PSP Association any new news is discussed. Because of the group I found out about the research going on at Cambridge so am able to partake in this. Too late for me but maybe they’ll find something for the future. Glad you are still around! Jayne x
I wanted to get my Mum along to a group when we first got diagnosis, however we are at least an hour away from our closest one. She tires very easily and so I try to avoid going that sort of distance unless we have to, eg hospital appointments. There is also the fear of the unknown, although I haven't made it down to the London meet, I have considered it, because, although we have not met in the flesh, I do feel like I know everyone on here, so it wouldn't be a room full of strangers. I am quite shy as is my mum, so the unknown is a challenge for us. Given how much benefit others have said they get from it, maybe we should try though.
Hi Anne, are there any groups in the North East area like Newcastle upon Tyne. I would love to meet everyone. It would be so nice to thank everyone who has helped me and I know are there for the next meltdown. Although Les is no longer here, and I struggle with it each day, I would love to speak to others.
Contact the PSPA. If there isn't a group, perhaps you might feel up to starting one for them. I did help out for a while at ours, but have left now, trying hard to leave PSP behind me.
I also belong to a Widows group, the Jolly Dollies! I know there various groups around the Country. Ours is great fun and again, whilst nobody has heard of PSP, they know what it's like to be on your own.
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Fed up with this now!
You can't make this stuff up!
