PSP Association
5,172 members7,177 posts

Following on from Heady, use this forum please, it truly helps!

Dear All

Please remember this is a forum where you can all rant, scream, rave and ask questions!!

Without the help of my friends on here I'd be lost!!

Ask whatever you like, don't be shy, some of us (oldies) won't always be here so it's now your chance to take over and help others! This forum is like no other, use it!! Don't lose it!!!!!!!

Don't just read, come on, join in, fight psp, without our voice, we will be even more screwed!!!!

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oldestnewest

Keep on moving.

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Indeed!

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Damn right Amanda! xx

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How you doing Pat? X

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Not too bad thanks Amanda, I'm in Florence Nightingale mode again, my 88 year old Dad is ill, he can't walk so I'm having to do everything for him, hey ho just another day at the office so they say!😂😂

Love....Pat xx

Hope you and your Mum and Dad are ok....😂

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Sorry that laughing face wasn't supposed to be there! 😖 xx

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Bless you Pat! It never rains but pours eh? I spent 4 hours with Dad today, cut his hair and went to the entertainment which he loved, bless him Mum is ok too x

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Thanks Amanda, well said. But I hope you won't be going. xx

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Not yet nanny857, I just want to keep this forum going, for all of our futures!! X

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Amanda I would be lost without this forum, helped me through so much, met some lovely people, always ready wit kind words and words of wisdom xx.

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Couldn't agree more Yvonne! X

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Totally agree Amanda. It would be a crying shame to see all the help and support vanish because others don't pick up the baton. I am hanging on but am constantly being told I should come off the site! I can't leave people to struggle though. I know what that feels like. I must spend hours on here though! I sometimes get so tired I can't reply! Hence the reason I am still not in bed? Night night x

Marie x

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I think this forum is addictive Marie! The help we all receive is absolutely amazing! X

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You are a blessing Marie. Much love 💛🙏

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Who is telling you to go off the site ?? Your support to all of us is valuable.

Althea 💛🙏

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Althea nobody from the site.!! Friends who think I should move on and say I can't do that if I am reading about PSP all the time! I have ignored them so far as I can't turn my back on everyone. One person told me a couple of nights ago that she doesn't contact me much because she knows I am on the site!! That's the best excuse I have heard so far for not being there for me!!.

However I have ended up getting too involved at times and that does get to me I have to admit. I can't grieve when I am advising someone else what they should do because they are in the same place as I am. Typical of me I can't sort myself out but sorting others out is a doddle. Then I realise I am alone and I find myself sinking.

I find it easier to talk to carers on the site and help them through this nightmare though. I don't post everyday but when I think I can help, or see someone needs a little care.

Carers go through such hell but so do people suffering from this cruel condition. Those who appear on here and communicate or try to, or send a like when I post, make me feel very humble. I think they are such brave people.

So if I came off the site I would worry because I know the help and advice in the real world is worse than rubbish! Not that I know it all as I certainly don't, but between us all we muddle through. I feel like you are all my extended family. So I am still going to read the posts and still advise people where I can. If I get lost someone else will step in!

Love to you Althea and thanks for asking in amongst all the worry and caring you are doing. I only wish you lived nearer.

(Big hug) you are a special person.

Marie x

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MY dear Marie,

I say MY because MY is what you have become.

My selfless stalwart who keeps giving and giving. Your time, your energy, your advice and your love.

If helping others is your destiny then fire away. We are all ears.

I pray that you will set aside some precious time to mourn deeply.

Mourning is such a long process and we never quite get to an end but in time our hearts ease a little.

Continue to use your gift of caring and loving others who have experienced this Hell of PSP.

Althea 💛🙏

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Couldn't agree more. Jx

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Jx see the reply to Althea! You two are very special people you know? Just thought I would say that because people need a virtual hug from time to time and you are both very kind. (Big hug)

Marie x

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I needed a hug today....thankyou. Jx

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Hi Amanda, I did write a really long response to your post, but I have just noticed it didn't come through. Hey ho!

I can only thank you for taking up the baton and say to all our fellow readers, this IS the only place you will hear about PSP, warts an all! The only place you will get the advice you need, the support from people who really understand what you are going through. I know it's daunting and you feel that you are breaching your loved one's privacy, talking on here. All I can say to that is, Steve's life was made 100% better, because of the advice and support I got from everyone. Somebody actually listened, understood, helped when they could, let me cry on their shoulder when they couldn't.

But you have to take part. At first I thought I didn't have anything to contribute, I knew nothing about PSP. One hour with a sufferer and you have more knowledge than all the professionals put together!

So come on guys, start posting, tell us your worries and fears. Let those that have gone before you, help. There is always someone, going through exactly the same you are, at this very moment. You need to know that you weren't the only person up at three this morning, changing the bed for the third time. Had that meal, you spent hours cooking, puréeing, only to have it dribbled out onto his last clean shirt. Need I go on????

Life with PSP/CBD is extremely hard, "a problem shared is a problem halved" I wouldn't go that far, but it sure does help having someone to talk to.

Sending lots of hugs and much love.

Lots of love

Anne

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Well said as always Anne, thank you!! X

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Always here Amanda, may not contribute much, but am reading every day.

Lots of love

Anne

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It's good to know your still here, you've helped so many of us Anne!!! I'd never have got my dad to the hospice if it wasn't for you!! And their help has been second to none! So thank you darling!! X

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Thank you Amanda! That means a lot to me.

Lots of love

Anne

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Oh my dear dear friends Amanda and Heady and so so many more on here I feel I know so well but have never met.......EC, Nanna B....the list is endless. You are so right......we all need to voice more. I am so guilty of not speaking enuf on here........I stalk and get info I need but am always too exhausted to actually open up and talk openly........so here goes a confession that I am embarrassed by but more appalled at myself for but I don't doubt for a moment that I should have shared this when it happened to get the support that is so ready on this site. So....two weeks ago I let rip (no I didn't fart sorry) I let rip at my brother who had been in Australia for the last 18 months and just cone back. We were at my parents and he was listening to my dad moaning about the carers yet again (unfortunately we have been provided with carers for mum from one of the worst care agencies). So he said that all he's witnessed since he'd been back is me and my dad at loggerheads and did I not think it would be a good idea to call a meeting with the agency!!!!! Does he think I haven't done this already......endlessly......involving the social worker and OT etc each time. To cut a long story short I shocked myself and flipped.....and I mean flipped like the craziest of crazy ladies. I smashed a glass and hurled a torrent of abuse at him, ending with why doesn't he stay and help look after mum and I'll f**k of to Australia!!!! My god I turned and looked at him and he was sobbing. I immediately regretted all I'd said and hugged him but once words have left the mouth you can't unspeak them. I hadn't realised I was so stressed although my sister was present thank god and said that my outburst had been a long time coming. Well I was shaken up for days and in floods of tears. My little sis wisely said "Michele don't let this wretched disease tear our family apart". Those words have rung in my head since as that can so easily happen. So sorry for the long post my dear friends......I needed to get that off my chest.

Much love, Michele xxxxx

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Bless you Michele, this is not surprising at all! In fact it's totally understandable, to me!! I personally think it's a good thing, because you've explained now exactly how you feel! Sometimes we leave things to simmer and eventually everything boils over!!! Equally I can imagine you felt awful afterwards but having said that, it's done and dusted, you've made your feelings crystal clear and the absolute stress you must be under (as we all are is enormous) thank you for sharing and please continue to come on here and rant and rave whenever you like, it's a great place to let off all that steam! Take care my love x

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Anne's right. Every one feels these things. The problem with bottling it up is that it bursts out in an uncontrolled way - often to the wrong person ! - and you're left feeling bad.

I now have learned to be much more assertive and try to tell things I'm upset about whilst I can speak moderately calmly. Doesn't always work and I blow up so quickly I surprise myself. We are so stressed all the time - - -

The family need to rally round and be tolerant to survive this PSP

love, Jean x

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I am just trying to open up and say my say. I never used to speak out. Just bury it. Well it got to the stage where there is no more room. That is when the eruption takes place. So I now try not to bury. ..say my say and move on...

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Oh Michelle, been there, got that Tee-shirt!!! So have most of the people on here, who care first hand with PSP. Unfortunately for my husband, he got the brunt of my outbursts. Which I know was totally unfair. But PSP effects us all, not just the sufferer. As Amanda has said, better out, than you keeping these thoughts inside you, getting bigger and bigger each day. Accepting life with PSP, is the hardest thing you will ever do, very few of us, ever acheive this. Therefore this outburst is essential for your Mothers care. Nobody can care whilst stressed up to the eyeballs. That really isn't fair,to the patient, your Mum will and your brother should, recognise this, so let rip occassionally, next time though, try and channel it to the poor care agency that aren't helping you. OR come on here and rant and rave, before the pressure gets on top of you.

Sending big hug and much love

Lots of love

Anne

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Is that all you did ? One smashed glass and some bad language. Forgive yourself immediately.

Althea 💛🙏

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Bless you Althea xxx

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Dear Heady, thank you for encouraging us to open our hearts.

Much love, 💛🙏

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Hi Althea, I was never one to open up about my feelings, my worries. PSP changed all that, I had to find an outlet, sorry I will re-phase that, I found the forum and read the posts, which frightened me stupid. Then I took the plunge and posted, I never looked back, it was the best thing I have EVER done. It saved both mine and I suspect Steve's sanity. I knew what was around the corner, therefore, at times I was ready for whatever PSP threw at us. Sometimes it even worked!!!

I praise who ever is up there looking after us, each and every day, for this site and the lovely people who unfortunately are in the same place.

Lots of love

Anne

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Dear Anne, thank you again for opening your heart to us all. 💛🙏

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Couldn't agree more, not only do you get the most informed advice, chance to get things off your chest but you feel that you have friends on your side. The love and support you feel from this site is invaluable beyond words so get posting to help yourself and others on this forum.

Love Kate xxx

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Exactly Kate! This is the best place on the web! Amazing support with wonderful friends! X

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I look forward to reading the posts on this forum every morning as I often find interesting and helpful topics that run parallel to our situation with my husband (73 years old) and his journey with PSP. Right now he is in a nursing home being taken good care of after a hospital stay with an UTI. He is having rehab. He wants to come home and I would love to have him home but I dread the many night wake-up calls. This stay at the nursing home has given me time to get my blood pressure down more to normal and get more good nights sleep. He was diagnosed with PSP in 2015. Poor eyesight started this evil disease along with many falls. I HATE this PSP. It's robbed us of our "Growing Old Together" time. Thanks for letting me rant and rave this morning from Minnesota.

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I understand every word john, thank you for sharing x

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I couldn't agree more!

Cuttercat

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I couldn't agree more.

Cuttercat

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I couldn't agree more - where would we be without this group? It's been the MAIN source of help for us and I'm so grateful for it. I've directed a few peeps from the Facebook groups too, a couple of them going through the same struggles for diagnosis that we did. No one should cope with this alone, I dread to think how we would have managed without the knowledge of you lovely lot!

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Aww that's really good to hear, thank you!! X

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If there's one thing this forum has taught me it is that you have to learn that things get done for those who shout the loudest. It may be out of character for most of us but it seems to be what it takes to get the correct support for our loved ones. I have recently had to change care agencies (because our present one said we now needed 2 carers but they couldn't give us 2!) and had to lay it on the line with the new agency just exactly what I was looking for. Things are now a bit more settled.

I have gained lots of information on this forum and I, for one, am very grateful to everyone who takes the trouble to post advice and support. Keep it up!

Margaret

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Bless you Margaret thank you for sharing x

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This is the most wonderful safe haven. Frequented by an absolutely amazing bunch of people. Not only do you all somehow find the will and the energy to go to battle with PSP for your loved ones, all day and night, for years on end, but then still to find the generosity of love and spirit to support the others here. I'm so grateful for all the help and support I found here on my journey. The wonderful thing is that whatever effort you put into posting here is returned many times over. I can honestly say that finding this forum was (and still is) one of the very few positive things that came out of PSP.

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Totally agree with you 110% Sawa! X

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Hi I agree that much strength can be found on the forum. If not advice the support is fantastic. I don't often post or reply but I do read all the posts. Hate to admit it but I do get overwhelmed. I lost my wife 6months ago. The support and kind words of was really encouraging. For the old friends that know of my standing will also note a change in my attitude and approach.

The forum really helped and made me realise that I do need help .... I have started attending group counseling for bereavement. I am not out of the woods yet but do find some days easier. Will post again as I make progress forward. The forum is like family because of our situation we can understand what is going on.

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Bless you, I'm pleased to hear that you are attending group counselling, one day at a time my dear, but it does sound like you are making progress in what must be an extremely difficult situation x

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I have had a slight set back. I was feeling positive, but sadly had another sleepless night. I must be honest I don't feel good at all this morning. Dark cloud above me. Surely I should not be in this state. The struggle continues. Some good days, which today isn't. Just feel so apathetic . Nothing matters. Trying not to bury but to reach out.

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I think how your feeling is normal! Without bereavement we all have bad days, so I can only imagine how you feel......keep reaching out. Huge hugs x

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Of course you should be feeling down. You have just lost your wife. Why shouldn't we cry and feel sad about losing our loved ones. I know it's hard, we all want this phase in our lives over as quick as possible. I get into such a state, trying to force my way through all the crap. A few weeks ago, I had an incident with my dog, that forced me to concentrate on today, not the past or the future, suddenly I realised I was actually feeling better because of this. I have now accepted that some days I feel really down, I stop beating myself up, because I cry or just sit around. It's all part of the grieving process, good days and bad days. This may sound bazaar, but I have actually achieved some real progress on the bad days, I force myself to do something positive, which does improve my life. It's the little things, that we can all do, that start to add up and our quality of life improves. Even if it's doing things, you might not necessarily enjoy, it's filling in time, until you find something that you can get pleasure from. I know that day is still some way in the future, but with support and that horrible word "time" both you and I will get there. Until then, accept there are going to be days that you hide under your blanket, mine's got tiger stripes on, what colour is yours????

Sending big hug and much love

Lots of love

Anne

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Black and blue which is the emotional battle. I only wear black..

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I'm had a string of not great night's sleep lately. I know how you feel. I do try to nap during the day. Lots of things are sliding around the house. Can't be helped. One thing that helps me is a mini workout. That helps with the stress levels. I get mellow after my brief workout.

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