Hi everyone, especially those who haven't been on here very long.
At the moment some of us are on a high, meeting old friends, putting names to those that have meant so much to us during our journey. That we are forgetting one reason why this site works so well.
Nobody knows us, we all have our user name and our anonymity, if we want it. This has always enabled me to say exactly what I am feeling, air my problems, express my grievances. Basically scream and shout how unfair life is. I know that I would not been able to do this, if I thought for one minute that someone might know me. Over the years, I have come to know you all and therefore it doesn't matter to me now. But it might to someone just starting their journey.
Can you imagine talking about your loved ones toileting problems,in the way we sometimes do, if for one minute, you thought someone might recognise your partner, mother, father?
So please, if you are just joining us, don't feel you have to say who you are. In fact DONT tell us, until you are ready. Enjoy your anonymity for as long as you want it. That doesn't mean don't come to any future meetings. Just keep your posting on here anonymous.
Lots of love
Anne
Written by
Heady
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Thanks, Anne. That's a VERY good and useful point, and you express exactly my experience. I wanted to protect my sweetheart's privacy, and only put our picture up after our beloved peterjones, "psp bloke from Queensland", asked me to. He, of course, was not named Peter.
I still sign sometimes as Easterncedar because I'm used to it and like it, and expect many of you think of me as that - I still first think of you as Heady - but have found myself using my real name more often. I'm not the only Sarah though!
I do miss Peter Jones. He used to send private messages to Colin and I would respond. He knew Colin could hardly move and always ended his very amusing posts with Thumbs up mate👍🏻.
Still trying to deal without Don being here and it is over a year. I feel that only half of me exists, talk to him every day in my mind. I pop in once in a while here. How are you?
.. Here's a funny thing: I'm newer to this group (2017) and therefore not in your/Peter Jones cohort, yet when I went searching through historic posts for info, I saw this charming cheery man with the unique 'downunder' voice and loved it! I noticed his replies, saw he was making a move to a care home and realized he wasnt posting anymore so feared the worst. You (Sarah) let me know he was gone (I asked..) and then I saw Bindi Leech's post and completed the story. I felt very sad.
So... Why tell this? As a tribute to Peter/Reg from even a newbie, and I guess just to show how one can have an impact beyond what you would imagine, by participating on this site.
Hi Anne G, that's one reason I stay on this site, so voices from the past don't get lost. Everything I learnt was from others, many like Peter Jones PSP guy from Queensland, aren't with us anymore. I owe them my sanity. The fact you have found him and understand why we all loved him, is a huge tribute to what we all are trying to achieve on here. Thank you for that.
I'm so glad you found Peterjones. He was a lovely man. What a joker! So few of the folks with PSP keep their ability to communicate like that, so his perspective was really valuable, and he had such a talent for making a funny story out of every turn of events. Reading his posts and messages - we corresponded quite a bit - to my guy was a regular source of cheer for us.
I'm very grateful that this site has preserved his writing.
I'm glad you have joined this site, too, Anne G. You have a good voice.
So true. Peter Jones was generous with his advice. He had authority - when he advised allowing Chris freedom to fall !! He had such a humour he was inspirational.
When I first joined the site I was very aware of anonymity being important to me. I never did this before and was cautious.
As time went on it mattered less. To me it was a bit like when I gave birth. I entered the ward a very private person and quickly became a "mother " - anyone could have a look !!! It finally seemed normal to have a laugh with a handsome young doctor as he stitched me up !!!
Chris was very matter-a-fact about all the personal problems. In fact making a laugh is a way our family copes and helped the grand children feel comfortable. You can't really ignore grand dad having a running nose or ramming food into his mouth or being unable to play " fish " properly.
I think its a personal right to maintain privacy without being judged.
Very well said Anne. It is exactly the fact that I was anonymous but chatting to a group of people who understood that I was able to vent my frustrations and deepest darkest feelings and thoughts that even I wasn’t sure I should ever say out loud. I must have joined this site a good three years ago and was happy and ready to meet my supportive bloggers who I felt I’d got to know and love over those years for their support and kind words. But for someone new it may not feel right and that is ok.
I agree , I think of you as heady, who has become a friend , who always has a cheerfull word and a funny tale to tell. I think we sometimes forget you to have already passed along this bloody road, and still you keep us going. Thank you my friend, ,....Brenda
I'm on a closed Facebook forum for caregivers of PALs.They get very frank about their problems and life's reality, as I do.I don't mind them knowing my face and name .I haven't told family members , except for my SIL.
Thanks, we're new to this whole world of PSP/CBD--all these acronyms that sound like they belong in a video game, and not to horrible diseases. I feel like I couldn't share much, not for my own privacy, but for my husband's. He's slowly beginning to tell friends and family about what's going on. But I feel like it's more his comfort level that matters right now. So thanks for understanding. You can call me Lost!
Hi Lost, a very apt user name. Its how we all feel. I know life revolves around your husband at the moment, but please don't forget yourself. YOU are going to be the most important part in your husbands care, therefore your welfare is paramount. He needs you to be at the top of your game, physically and mentally. You will need help and support from everyone you know. your comfort levels matter just as much as his!
As people get to know about your husbands condition, offers of help will pour in. ACCEPT them! Don't leave it until you think you need help,it will be far to late by then. I know this from bitter experience! We all think we are the only ones that can care for our loved ones, that is complete rubbish. Anybody can. BUT, there is one job that only you can do and that is be his wife. By accepting (even demanding at times!) help, that will give you time to fulfil this most important role. It's the only one that counts.
Hello Heady, Been a very long time since I looked on Health Unlocked. A message appeared on my little used email account and I thought 'Why not look'. In many ways it was nice but 'bittersweet' to see. To those who recall and wish to know yes J is still kicking along, albeit a little slower these days. Our daughter is now soon to be 15, and still cuddles and speaks to him dearly. The rest, well that's history... (well more that's my way of coping....) Bye for now, and take care of yourselves Ladies and Gentlemen. Regards, Alana
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