PSP Association
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"No plain not followed by a slope"

An old Chinese saying. They do the obvious so wonderfully well.

Well I have had the slope and now, please, have arrived at the easy plain.

Liz has been rather hostile toward me for a while. Over the last two years its waxed and waned and in equal measure so very loving and caring. She has been so angry at the illness, the helplessness and the inevitable. Then when her needs were too great for me and the carers she had to go into a nursing home. Thankfully we found a really good one.

She then became angry and difficult with the staff. Last Sunday I brought her home and she was impossible.

I read her the riot act. Warned her about loosing her placement and the likely consequences of an EMI placement. I told her that it was not on to complain to me about staff being nasty when they were standing there listening and ready to help. Also of the possible use of Deprivation of Liberty Safeguards if she continued to wilfully undo her safety belt on the wheelchair followed by unsupported experimental transfers.

When I got her back to the home she told me not to visit on Monday. When I asked about Wednesday she added. "That too."

I became frightened this placement would break down and felt tearful at her distress.

Well I slipped in today and found a different Liz and a different attitude with the staff and with her. Everything was smooth. She was smiling and there were many hugs and kisses. She seemed peaceful too.

Maybe, just maybe, she is adjusting and learning to trust them.

Maybe we are on the plain at last... then will come another slope, of that I am sure.

But tonight I will be able to sleep and not toss and turn hurting at her distress and worrying about a failing placement.

All is well tonight.

Thanks for being there for us.

Warmly

Kevin

61 Replies
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Kevin you have such a way with words...yes we are together in this very difficult journey. I am with you and sending a very big virtual hug this evening xx

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Thank you Martina

Hugs back at you

:)

xx

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May the sweetness settle in for a long stay, and may you get some good sleep, Kevin. Love to you and Liz. I do feel for you both. Ec

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Thanks for that and for being there.

Hugs

xx

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Hi Kevin

I’m so pleased that Liz has got the better head on for you and that there was plenty of hugs and kisses . It maybe she’s just having a bad day sometimes .archie has these a home he tells me to go away and it’s not polite lol I then leave him to the carers a couple of hours then he right again

Hope you get you good nights sleep and I’m sending lots of love hugs and kisses your way

Sue x

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I slept wonderfully - Thanks. I'm sure I shouldn't be so emotionally tied up to her... but we've shared this journey so closely and it has been my whole world for so long.

xx

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"Shouldn't" doesn't come into it, Kevin. You have a loving and loyal heart. Liz was so lucky to find you, but then it's also clear you were lucky to find her. Such love isn't as common as we like to think.

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Yes, I know you're right. We are lucky in that.

Hugs to you

:)

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So very hard to read Kevin! So unfair to you both! Keep sailing my friend x

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Hi Amanda

Yup, as we both know 'fair' goes out of the window fairly early on with PSP.

I know it hasn't been easy for you, your Mum and Dad eather.

How're things at your end now?

Hugs

xx

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Definitely not fair at all Kevin mainly on the Psp patient!

I’m ok darling just carrying on

Hugs x

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Could have written that Chinese proverb myself from own experience!

Glad you have reached that plain and hope it lasts a good while!

My grandson has teenage fits of angry behaviour just like that! He explained to me that he was in pain and not managing well and needed a break.

Maybe Liz had a 'bad day(s)', mentally or physically. Can't be easy to tell.

You both have a strong lasting love for each other! You have been through, and still going through, Hell. Yet you are still there for her!

Cling to what you KNOW is the real Liz! And she knows that you are her ROCK.

"Sticks and stones...." and yes, the words still hurt.

Hang in there! Enjoy the quiet patch. Often think of you both and wonder how life is treating you.

Big Hugs to you both!

Jen xxx xxx

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Thanks Jen, that was a timely post for me to read. One I should re-read daily!

Hugs back at you!

XXXX

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Oh Kevin you are an amazing career, I hope Liz comes to love the are Home, sounds lovely, we keep smiling Kevin . Big hug Yvonne xx.

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I wish I were better Yvonne.

I feel her suffering so deeply and that makes the burden heavier and the caring harder.

I expect that's normal.

Hugs back

xx

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Kevin I can feel your pain, I think we will always feel pain, for the lost time together, for the dreams that we can’t fulfill, for loosing the person we love, for all the hard times knowing they didn’t want any of this. Big hug Kevin. Yvonne xxxx

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Interesting!...I know so much of this is beyond our loved ones' control...but maybe your 'tough love' had an effect. Here's to a long wide plain :-)

Anne

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Hopefully.

It's a bumpy ride to be sure. I've just got to keep the cart moving forward eh?

:)

Kevin

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As carers we all have bad days but I am certain that the PSP sufferers days are far worse but sometimes it just gets unbearable ..... but we do what we do .... carry on loving and caring. Take care Jxx

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Absolutely J

She must sit there with the illness for hours each day, just experiencing it and the loss of what she can no longer do.

I see her watching me do things with a longing to be doing them herself. Her strength is quite humbling.

Kevin

xx

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Kevin I do hope your are on a plain now. I’m beginning to think the unthinkable that John may have to go in a nursing home but two nights respite in a good one and they found him too challenging. His behaviour sounds very much the same as Liz’ so I understand and sympathise so much. I pray that Liz’ present mood will become your new normal. John has an assessment from the hospice this morning so I’m hoping that will provide a solution. Sorry what was meant to be a supportive and understanding reply turned into one about us! Xx

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No VronB

It means I am not alone.

Staffing costs are probably the single biggest cost to a Nursing Home. Too difficult to manage, I am sure, often equates to, "Too much for our paired to the bone staffing." Certainly the staff to patient ratio is a key indicator assessed by the CQC.

The rather over the top report from the Nursing Home which said it couldn't manage Liz was the thing that secured max. CHC funding to go to a better home.

I do hope you both get a good solution soon. Appart from anything else it must be very stressful for you.

xx

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Thank you Kevin. The matron at the home rang our local hospice and a dr and nurse came to assess him. He is being admitted as an inpatient to see if they can calm him and stop the getting up without support. I'm sure you know the state of tension one lives in simply going to the loo and listening for bump or calling constantly. It's interesting you or rather Liz is getting CHC this is something hospice dr was discussing. I worry tho that John's needs are mainly caring.

I hope Liz remains peaceful and that you recover your strength. Xx

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Such a bumpy road....nay a life of valleys and mountains......What do you do? you love the sweetness and worry that it stays....will the "hatefulness" come back? Liz whoever you are, I will be with the one you were. the one before PSP...I love you now and forever but I survive knowing who we were before PSP. All other behavior is, well, you after and I will go beyond that the evil, and continue to see the beautiful I love you Liz and within you I know you love me....

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Can I say Amen to that?

Hugs to you Andrea

xx

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We can try to out ourselves in our loved ones shoes but we really don't know what is it like to have to endure these conditions. No wonder there is anger and nasty words involved for them but on us the carer it is another wounding blow.

I hope Liz begins to settle into her new surroundings more now you've have to had to say those words of reality to her and your visits are enjoyable events instead of ones of emotional distress.

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Spot on! It must be unbearable for her at times.

I try to keep that in my mind.

xx

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It is hard at times when feeling totally frustrated by it all!

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You are describing the same experience as us Kevin and it was unbearable. I hope with all my heart that Liz has turned a corner. Unfortunately for us the behaviour only calmed when mum couldn’t do a thing any longer for the last week of her life. She actually fell trying to get out of her chair 8 days before her death . On numerous visits she would repeat constantly “ take me home “ for the whole visit. When we did take her home, we tried to do this most Saturdays, we all ended in tears. Her behaviour was completely out of character. The EMI bed was brought up with us and we had to fight for our 5 stone mum to be kept where she was. My heart goes out to you Kevin and I hope things have settled when you visit Liz next Xxxxxx

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Hi Doreen

Yes, it sounds much the same.

To some degree I really respect her willpower to try to continue against the staff if she must.

I think we have an understanding now. You have probably seen my next post which was of a much happier visit.

The trouble is I would rather have a difficult Liz than non at all. Horrible thing PSP!

xxx

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Thank goodness Kevin , I’m so pleased you can have a little restbite and sleep well for a while at least . It’s so hard but we are in this together ... so here for you as is everyone else .

Peace to you today

Love Jude xx

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Thanks Jude

It's the together bit that helps me through.

I wish you and yours a good day too.

Love

Kevin

xx

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Well done Kevin! There is nothing wrong with the riot act, when needed. Also for leaving her on her on, letting the staff get to know her and her, them. Hope you did sleep last night.

Sending big hug and much love

Lots of love

Anne

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Thanks Anne

I really do feel we are on a better footing now.

As you may have seen we had a good visit yesterday. Albeit a turbulent one. I think she actually enjoyed the visit to A&E. She has always enjoyed soaps and there was drama galore in that place. She topped it off by looking at a glossy mag. of the upcoming Royal wedding. Another of her favourite things. She knows I have little truck with the whole Royal Family media thing and so I wondered just at what was she smiling at as I helped her turn the pages! It was her wicked smile after all. We both laughed at that.

Lots of love

Kevin

xx

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Dear Kevin,

It`s so hard isn`t it ? Trying to do the right thing for your loved one but constantly nagged by guilt.

P looks at me sometimes when I leave with such expression in his eyes. Although he has been in the home for 2 years, I am finding it increasingly difficult to leave every day and seem to be spending longer and longer with him (not a bad thing I know).

I know what you mean about the plain too, as soon as things settle down and become `the norm` you can bet your boots another dip is on the way - no room for complacency with PSP !

xx

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Oh, Hugs to you NBabs

I know that feeling of wanting to stay so very much.

I even sit and watch Coronation Street with her in her room. I don't normally watch T.V. at all. and Corrie is a definite no non for me. But it is a way of just sitting together and enjoying her enjoying something.

Tomorrow she is coming home to supervise the decorations going up. She loves Christmas and all of that.

Yup, I'm enjoying the sunshine whilst it lasts.

xxx

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Hang in there Kevin,we are all rooting for you! Xx Janet

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Thanks Janet

Folk here are really important to me.

Hugs

Kevin

xx

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I so pleased that Liz has settled down, it must be so difficult when you get all that grief when you are doing your very best to make things OK for her. Luckily Ben hasn't shown aggression towards me or others as yet, hoping that he doesn't go down that road. Sending much love to both of you and hope that the calmness is the new normal. Sleep tight in your bed Kevin.

Love kate xxx

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Thanks Kate

Liz has done more anger and hostility. She was always such a 'not angry no matter what" person. It's reasonable in some ways given what she is going through. Just tough to deal with.

Lot's of love and best wishes for you and Ben.

Kevin

xxx

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A sad read kevin. Please God liz will stay content for another while and you will get to rest mentally and physically.

Marie

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Hi Marie

Sorry, I just poured it all out.

I slept so very well. Also we had a good day yesterday. It's like we are having to find ourselves again with this change and Liz can barely speak now. Understanding one sentence can take ten minutes of questioning and thumbs up and thumbs down.

I hope for better days now for a while. More time to share love and being together.

Warmly

Kevin

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Kevin that is so good to hear.

Les, at times, was impossible with me but the staff said he was ok when I wasn't there. This is the fabulous rollercoaster of PSP. I feel that I was struggling with him and never reached an even keel.

I could never bring Les home as I wouldn't be strong enough to take him back as he wouldn't want to go and I know there would have been tears. We compromised by going to our son's and seeing our grandchildren.

It is exceptionally difficult to hear if they are unhappy

We end up worrying when they have been showered and had supper then bed

While we are tossing and turning about the decision we have made they ate sleeping soundly. This is another aspect of PSP that we learn along the way.

I hope Liz is happy and settles well so that you can both spend time together. Time that is valuable and needed. If you are both rested as much as possible you will enjoy spending valuable time together. PSP is so unpredictable we never know what is around each corner. I hope you both have fantastic time together.

As you already know I lost Les a week ago so I know how precious moments are. I spent time talking about our special moments during his last few days. I am grateful we had these and will always keep them close to my heart.

Enjoy this time together.

Love and hugs

Pat x

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Hi Pat

Your words are so spot on all the way through. Yes, I am trying to share and enjoy a lifetime of love in the time we have left.

I think I was deep in it when Les passed. So sorry not to have been there properly for you then.

Its early days for you. So I send my condolences and heartfelt wishes that your pain will lessen sooner.

Hugs and a tear for you both

Kevin

x

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Kevin please don't worry about not being fully there for me. Your reply was lovely.

I think when there is a PSP diagnosis we are in a bubble of our own. At least that was how I felt. We shut the world out, not deliberately, but it is so hard to talk about this vile disease.

You and Liz must try to make memories that last forever. On difficult days it's very hard to get through at times but the next day is usually better.

Love and hugs to you both

Pat x

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Thanks Pat

And yes!

Love and hugs

Kevin

xx

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I was taking your chinese proverb literally and therefore rather pessimistically.

You were obviously reading it in a more positive way: There is no plain followed by a slope AND there is no slope followed by a plain!

I wish this new formulation were true but I guess we are all left to some extend with the second, not written, part of this dicton!

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Hi loustalet

I guess it's a case of, "When you're already on the floor the only way is up." Though my dark humour is that with PSP, "The floor probably has dry rot and there is a another floor to down to."

Though I see from your posts you are fighting hard for the best of it for your wife. Strength to you. It's the only way to go.

Wishing you both the best

Kevin

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Thanks Kevin. Now on the 12th year that my wife showed the first symptoms. To stay with a bit of black humour, she is going to make it a world record. Black humour is about the last thing that I keep having. Plus a lot of "musico-therapy"!

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Hi loustalet

I guess it whatever keeps us going eh?

Twelve years is a very long time. I can imagine it already is a record.

Strength to you.

Wishing you both the best of it!

Kevin

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My husband's first symptoms were irrational angry outbursts for no reason whatsoever....he still gers bouts of them from time to time. He seems not to remember them....I think it is all a part of the rotten disease and they just can't really help it. The brain signals regulating emition are all messed up in addition to the frustration the other symptoms cause. My husbamd is less mean snd urritable now....but when they come I just hug him and hold him and tell him I love him. He whispers it back and seems to get ober it much quicker. It has been a rough ride and hard journey to get there especially with the awful things he woukd say....but I know it is nit the real him. Sucks.

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Hi senoritaparks1

What a wonderful loving person you are. Yes, hugs and love goes a very long way.

It occurs to me that while we are busy rushing around doing caring and making nice food, they ar sitting with the ever present illness experiencing their lack and losses.

This illness is such a horrible thing to suffer and it is so natural for there to be a lot of anger.

And, as you say thyere is the unpredictability of what the damage to he brain might cause too.

Agreeing, loving words, kisses and hugs are sometimes the best medicine there is.

It is a rough ride and a strenuous journey.

I really wish you both the best of it.

Warmly

Kevin

Yes, it sucks!!!

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Hope Liz is more settled now. Give her my love.

I'm with you on the royal family and enjoyed her wicked smile as she lingers over the photos !!! Liz sounds such a character !!

I know its a trial for you Chris and I used to try and focus on " PSP " behaviour and effects - thats what I was angry with. Sadly , for the last few weeks, he slept a lot and communication was difficult. Although the GP and community nurse both enthused about my ability to communicate with him and said I did was unusual. So its so different for every one.

The progress makes it hard to make the best of these last weeks or months. You seem to be doing well.

love, Jean xx

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I am new to this group. My husband was misdiagnosed with PD back in 2012.

The definitive diagnosis of PSP was only a year ago even though our neurologist said he suspected it at the first visit.

So here we go... we are living my worst nightmare

With every new symptom I lose a bit more of the man I loved and married.

I am struggling with the physical symptoms but the change in personality is even more heartbreaking.

I am his full time carer and I am riddled with guilt because I wish for the day this will be over.

I hate myself for thinking this, let alone articulating this dirty secret.

He will not even entertain the possibility of going into care now or ever.

I am exhausted.

I know I have to keep going and I will but it is very difficult.

What do you do to get through the day?

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I am really sorry to welcome you to the best site on the web! We are all carers, (ex carer, in my case) or sufferers of PSP. You are no longer alone, there is a very large family out here, ready to listen to your rants and raves. A huge shoulder for you to cry on. Plus there is a mountain of knowledge that nobody else will give you. We tell it, warts an all. Some stories will frighten you, others give you hope and hopefully a lot to make you laugh.

My husbands journey is over now, for that I am grateful, even though I miss him like crazy. We all understand the guilt, wishing it was over, yet not wanting them to go. Never sure which made me feel more guilty. Every thought you have, we have all been through at some stage.

The exhaustion you talk of, are you getting any help? Let us know where you live, so the right people can help you. One thing is certain, you can't do this alone.

How do you get through the day? You do, because there is no other choice! In my case, there was always a lot of tears, plenty of screaming in temper, especially at my husband, or should I say his illness. Also, lots of love.

Stay on this site, it got me through those dark, dark days. Everyone is wonderful and we are in this together. We will help you survive and give you the strength to care for your husband in the best way you can.

Sending big hug and much love.

Lots of love

Anne

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Thank you Anne,

I think this group is going to be a lifesaver for me.

Finally being able to speak the truth is liberating.

I live in Perth, West Australia.

I am open to any help or support even if it is just the chance to vent here.

Lots of love to you too.

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There are a few people from Australia. I suggest you write a post asking for advise for practical support. I'm in the UK.

Venting is definitely allowed on here, in fact it's compulsory. Every single one of us hates PSP with a passion. Only those who know PSP on a day to day basis, can fully understand what you are both going through.

Tell us a bit about yourself and how your husband is. This site is a life saver, certainly saved me.

Lots of love

Anne

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Welcome. I echo everything that Anne has said. Like her my husband has died [ 2 months ago ] and I don't know how I would have survived without this group, who really understand the complex feelings we have.

When asked how I managed I always replied " what choice is there ? " We do it and then rage !!!

Love from Jean x

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Hi Clarke19

I'm sorry to welcome you here, but its a good place to visit with plenty of experienced and supportive people.

Yes, it is horrible. With every new symptom we are challenged with more loss and new demands for care. It is hard work and heartbreak, but it is doable and often we can still find good times, some love and some laughter and they are the things that get me through.

You and many more share the same 'dirty secret'. It is deeply instinctive to want the suffering to stop for the one we love and for ourselves. So hey, your normal. Right now both me and my Liz want it to do its worst as quickly as possible. Until then we share love and hugs and that is wonderful still.

How to get through each day?

As much practical and emotional support as you can find. It is very common with serious illness for friends and even family to melt away. Serious illness most often quickly becomes isolation.

Do you have or need carers? Have you had OT assessments and physio assessments? Both are pretty essential.

Have you made contact with someone at the PSP Association? They are very good indeed. Is there a local PSP/CBD support group in your area?

Are you in the UK by the way? That matters. We have folk from far and wide here and if folk know your Country you will get more focussed advice based on services and legislation in the country in which you reside.

I do hope this helps as a starter.

It is not easy, but it is do-able. It looks very daunting in the beginning and its a huge learning curve. We grow into it though.

Wishing you both the best

Warmly

Kevin

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I can't thank you enough. Your response warmed my heart.

I finally spoke from my soul.

I live in Western Australia. We were attached to the PD community but I longer believe we fit in there.

Anyone in this group living in Australia?

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I'm pleased, we're all in the same boat.

Forgive me if you already know of these folk... Just to be sure

psp-australia.org.au/

Warmly

Kevin

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