PSP Support Groups

[Pjgil]

Has anyone been to the psp support groups? If so did you find them useful? The nearest one to me in Wales (2 hrs away) has its first meeting on the weekend and I am debating if I should go or not.

thanks

Pj

[Satt2015]

Go, what's too lose? I went to one, would have gone to more if time allowed but now you mentioned it I will try and go to the next one! I found it insprirational but a bit scary not gonna lie x

[Pjgil in reply to Satt2015]

I am scared which is why I am hesitating. Afraid of what I am going to see and hear, things are still pretty raw for us at the moment following the diagnosis. You are right, I don't have anything to lose and the potential to gain a lot of info and additional support.

[Satt2015 in reply to Pjgil]

Exactly give it a try! It's very informative and you need to know as much as possible x

[Heady]

Hi Pj, I go regularly to our meetings in Bristol. I won't pull any punches, at first they frightened me silly. Seeing people in various stages of PSP, was not encouraging. S said he felt we should carry on, mainly because, the volunteers were giving up their time for us, so we had an obligation to attend. A decision that has proved to be a huge help to us. We have got so much help, tips and advice from fellow Carers. S knows he is not alone in having this cruel disease, I see people who have gone through the whole journey with their loved ones and survived.

The nicest thing is being in a room, where everyone has heard of PSP, knows all its horror, there is no pretence, no patting on the head and all the other patronising things, professionals do to us regularly.

Like all things, try it, if it's not for you, don't go again. But I would go to several meetings, before you decide against. We always have a good laugh, regaling all our tales of woe and destruction our loved ones have been through.

Lots of love

Heady

[Pjgil in reply to Heady]

HI Heady,

Thanks for the reply, I think I will bite the bullet and give it a go. I can't hide away from the inevitable.

I have an understanding on what is going to happen to my dad, knowledge is one thing but its actually seeing others in a more advanced stage than him, knowing that it will be him any time is what i don't want to see but I can avoid this forever! I guess this is something that every loving family member thinks.

I will let you know how it goes.

thanks again

PJ

[jillannf6 in reply to Heady]

y ui aGREEE

;lol jill

xxxxx

[nomansland in reply to jillannf6]

Jill...you are one strong person ,love Rollie

[NannaB]

Hi PJ, I understand groups run in different ways. Our nearest is coffee and a chat in a garden centre. Some have speakers. Why not go along and see, you don't have to go back if you don't like it. The best thing about our group is that I got to meet Kate, Jean and Vicki who post on this site and their darling husbands and we have met at other times as well.

Give it a go and I hope you meet others who live near you.

Lots of love

XxxX

[vlh4444]

Yes I would say give it a go. As Bev says we met many friends at our local one and I still intend to go, at least to the next one, just to see everyone and be helpful if I can.

When Derek was first diagnosed we lived in Devon and the first meeting we went to was in Bristol - don't know if we met you there Heady but a I don't think so. Then we went to the first one which was started in Devon and when we moved to Kent we started going regularly to the one near here. It is very helpful to meet others going through the same and I don't think either of us found it too scary. We were just so keen to find out everything we could about what to expect.

Vicki

[Heady in reply to vlh4444]

Hi Vicki, when did you first go to the Bristol meeting? We started 3 years ago.

Lots of love

Heady

[alibid]

Hi PJ,

The lady setting up yours is, I think, someone who used to come to ours in Shrewsbury. Ours have 2 types, sometimes a speaker talks about things like CHC and POA, other times we'd just have kind of tea and chat.

I went with my friend who was diagnosed with PSP at 38 and has just died of PSP having just turned 40. I was surprised at how much he valued the meetings, although he didn't manage to go to many. You can imagine he didn't fit the usual demographic, and it was really in your face seeing how the progression looks in other people. But he was planning to try to get to the next one in November and was always interested in how his fellow-sufferers were doing.

Although it's scary seeing how other people are affected, it helps to understand the symptoms you may encounter and is invaluable in seeing and discussing how other people manage. It's also such a rare condition, it does make you feel more 'normal' being with people in the same boat. I also think it gives you perspective and you might even feel your lot is not such an unhappy one compared to what other people are facing.

We had a great chat recently at a meeting with a guy who's symptoms are developing, but he could really articulate how it made him feel in lots of ways. My mate would never have talked about it like that and helped me understand how he might be feeling.

I understand it's a big deal to manage a 2 hour journey for you to face a room full of sufferers, but I'm sure it'll be more gain than pain and we usually have a giggle at some point which helps too!

Good luck with it, and I hope you have a better journey with PSP from all the support you get from here and from the groups.

Alison

[doglington]

Yes. Give it a go. I met Bev and Vicki and , although I was upset at seeing "the future" , it didn't upset Chris at all.

It is a place where you can ask others anything and they know what you mean.

Try it, love, Jean x

[Kylie4951]

I was able,before bill got really sick, to attend one. I live in the Chicago area in the states. I got some comfort from the fact that there were others goingbthru what we were. The format was we met as a group, caregivers, spouses and those who had the disease, introduced our selves and shared our stories. Then we broke up into 2 groups caregivers and spouses in one and those who had the disease in another. During this time you again shared your difficulties as well as positives and got tips from each other. Entire session was two hours

Other times instead of the groups there was a speaker.

[Kylie4951]

I must agree with all the above comments. Tho bill never chose to go I did notice that those with the disease did get comfort from seeing others. As far as scary. Bill was sick for 6 years. I did not attend or find the group until about 2years into it. So I knew a bit what was coming. But I will say those who attended were not REALLY sick yet. When they did get really sick they stopped coming so you did not see that. Also I stopped coming as bill got worse as I did ntbwant to be away from him for 4 hours. It was hour drive each way.

[Duffers]

Hi pj

I go to as many meetings in london as I can. Sometimes a speaker or the dedicated Jan wilderspin pops along. It's just a meeting place for like minded or similarly afflicted people, psp or occasionally CBD. We all just voice what's going on in our own lives and if we've found anything helpful to ourselves or possibly others. No big deal, a cuppa and a biccy, but nevertheless an outing of sorts. Give it a go and see how you get on. Nothing ventured nothing gained.good luck. Marie

[1941mary]

Hi Pjgil,

I took mum to one that was held in Liverpool in June as mums occupational therapist suggested it and mum wanted to go. Meeting the PSP association support was lovely .. really kind and full of lots of good advice . However I really got upset seeing the different stages of PSP . ( obviously when I got home .. discreetly)

So a bit mixed really ! I went to the annual PSP meeting in bournville in sept and It was marvellous .. lots of useful information and fun events !

So all in all go ... just be prepared .

Much love

Jude

[Pjgil]

Thank you all for your support and advice. My husband and I went along to the meeting and it was quite daunting at first but I have to say the people there were wonderful. I learned a lot more about the condition, how to deal with what is facing us and got to meet a few people with the condition.

I've told my parents about the group and my dad has surprised me by wanting to go to the next one. They have accepted his condition so much better than I thought possible and so much better than me!

I think that it will be a great thing for us going forward as I already feel stronger and not so isolated.

Thank you again

Pj xxx

[alibid in reply to Pjgil]

That's great news, I'm glad it was overall positive! I find it interesting that lots of bereaved spouses still come and it's helpful for everyone.

All the best!

Alison

[Tippyleaf]

Another option is the Friends and Family says which are held around the country I think 2 per year the ne t one is in Crewe in May. We have met and kept in touch with some amazing families - the only positive thing to come out of PSP !!!!

Xxx