Thank you one and all for the good wishes .I believe the panel has 28 days in which to respond .I expect they will take it to the wire they did last time when they turned us down .
Thankyou: Thank you one and all for the good... - PSP Association
Thankyou
Written by
Georgepa
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33 Replies
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Good luck George, I do hope you get it this time, you definitely deserve it!
Hugs....Pat xx
You want me to call the queen for ya George, I'll do it....!
Good luck to you tomorrow.
AVB
My fingers n toes are crossed for ya! X 🙏
Gah! Why do people DO that?!!
Hoping/praying for a positive response this time...and in less than 28 days.
X
how is c now
luv jill
xxxxx
Hi Jill, Colin is very peaceful but failing slowly. I'm very thankful he is not in pain. I'll let you all know when things change.
Take care Jill
Lots of love
X
Hang on in there George x
hi
if its any comfort they will backdate it ! i know but any little thing to brighten our days!
julie xx
Georgepa, good luck to you. Were you allowed to go to an assement? I have been told by the Social Worker that she doesn't know when it is and won't be allowed to attend. It will only be senior officers! Senior officers of the council and the NHS? I asked about attending and was told she didn't THINK they do things like that here! She should know the procedure? She also couldn't tell me the names of the panel. Great?
Marie _14 x
i got it on appeal via hospice backdated and still pay through direct payments
lol.jill
xxxxx
You are there for the assessment as you contribute but not the verification panel which decides if you will get funding based on the assessment .The panel is held in secret behind closed doors and I suspect in a deep subterranean chamber and if you are successful white smoke emerges from a chimneyandif you are not they burn your assessment and black smoke emerges but perhaps I am being fanciful .
Lol yr right .
Georgepa I was at the Assessment. However the highest he scored was 2 Highs. Stupidly I thought that was the highest that could be scored! I now learn it's severe. Our Social worker had the documentation. Since then (2 weeks) he has gone down even further. So we will almost certainly be refused based on his score and not the fact he is now worse.
Interestingly I have the private mobile phone number of a senior council officer. She had a moments weakness I think and gave it to me...much to my amazement I might add! To be fair she did help me once when I didn't know who to turn to. However I rang her yesterday and asked if she could ring me back. No phone call. Rang another officer who is not as senior but has actually told me to ring her if I need any information. Whoever answered the phone told me she was there and to hold on. Next thing I get the Social Worker! I asked for the other person again and she got quite shirty asking me did I not want to talk to her. So I had to talk to her! A total waste of time I might add.
These people are bullies and have our lives in their hands. When this is over I will write a book, maybe two! I have had more hassle with the lot if them than I thought possible in a lifetime.
Rang the PSP Helpline but they won't send me any pamphlets or anything to help until hubby is diagnosed! I was getting some until I made the mistake of being honest and reading the letter from the Neurologist! As he has covered all bases in his letter we don't get help from anyone! Although the MSA people have sent me info to be fair. Both conditions are so similar. The Neuroligist actually said my husband had symptoms of both and mentioned MND too!! I was told today on the phone that the conditions can't be really diagnosed until an autopsy is carried out. So why not work together to get the best treatment for everyone while they are still here? Is that a mad idea? If the Neurologist decides he still doesn't know what is wrong we are sunk! Yet we will never know until my husband is dead?
I just have to hope he is alive and well enough to see the Neurologist in December! Either that or pay to see one. This despite the fact the Neurologist actually told us he thought it was more likely to be PSP. My heart sank and I then I buried my head in the sand. Now I am ready to face it but nobody wants to know.
I so want to give my husband hope but I can't even tell him about the meeting being held because we don't know when it will happen. At least it would mean someone was doing something? Feeling desperate now.
Just been looking at our wedding photographs taken 50 years ago tomorrow. I think it has depressed me even more so than I was already.
The news is on now about Aberfan. 2 days after our wedding. All those children killed. So very sad. I always remember it each year. We were so happy and then all those families were torn apart. Tragic! Sorry for being so down. I will have to paint a smile on my face for tomorrow!
Marie_14
You are really unlikely to get funding on two highs .The whole system is barmy because it takes no account on how an illness progresses .It makes its decision on how things are on the day of the assessment .I am not sure it is either three or six months before you can put another one .But the first thing you need is a diagnosis .Ask for a second opinion and really push .These neurological illnesses are difficult ,you will find alot of people on this site were wrongly diagnosed in the early stages .By the way you can download alot of information from the PSP website and from NHS England .Goodluck it is a long and rocky road I am afraid .
George
You are so right! Barmy is the polite version of what I would like to say!
Not holding out much hope for him to be honest. He has lost so much weight he is starting to look like someone from an area where there is a famine! Don't know what to do unless I take him home to die? I really feel he will die if I don't do something. I know he will anyway but feel it will happen before it should. Maybe that would be a blessing?
Marie x
That's a hard call to make .
George I have spent the day crying. Nobody to talk to and feeling whatever I do will be wrong.
Thank you for being so kind as everyone on here has huge problems including you.
Hope the powers that be ensure you have the help you need to take care of your wife without wearing yourself out. You are always a bright light. Don't know how you do that!
Marie_14
Of course you can cry ,I have my days too .It sounds as if you are doing all you can and it wears you out .Sometimes you just have to step back and let things take their natural course .sometime ago V decided against pegs and resuscitation and even intravenous antibiotics.Her quality of life now is pretty much zero so there will come atime when I have to let her go .I doubt if anything will really prepare me for it but accept it I must.Keeping her going would be only for my benefit and would be cruel .
George had my husband done that he would be dead by now. When they took him into hospital he was so ill they put him on intravenous antibiotic. It is a powerful one and it worked. Maybe we should have been more prepared for all of this?
Tough when we had just come to terms with his Leukaemia? It feels like there is a devil out there laughing at us and when one thing is not exactly sorted out but at least the Leukaemia medication gave us extra time and hope. Then we were hit with this thing! It might be MSA or PSP but more likely the latter. Then there is mention of MND for God's sake! It's disgraceful that he was left in that state with no more tests to see what they could find. Then when I tried to talk to the Neurologist this werk I am told he probably won't talk to me. I feel so defeated and feel I am letting my husband down. How do I live with that?
Marie_14
Oh Marie, I am so sorry for you and your husband. I know sometimes I look at photos knowing that I will be the sadder for it, but somehow it is ultimately cathartic. I hope that is true for you, and that once you've felt the lowest, the happy memories will come back to pull you up. With that hope I am going to congratulate you on your anniversary and wish you happiness on the day. You have the love. I wish you also peace, Easterncedar
Easterncedar what a name! Not the big trees you have in the US or are you in UK? Go on tell me you are in NZ!
Thanks for your kindness. We had a nice evening last night. Well I think we did. Not sure if my husband will remember it for long though. He knows his memory is getting bad and he looks so worried when he says it. I just joke that we are all getting that way. It's actually true in my case. I suppose the stress, or maybe it would have happened anyway.
Last week I had a fall in the bedroom too and it shook me up. Not the first time it has happened but I thought too quick getting out of bed. Had my blood pressure tested at the docs and my BP is high. Not surprised! Now have to test it for a week morning and evening and have a chest x-ray and a test on my heart. Then he will decide what to do next. Maybe I should get that sorted before I try to make any big decisions? I always try to do more than one thing and forget I can't do that now.
Marie _14
Our cedars here in the stony northeast US tend to be small. I started out here rather shy about using my name, trying to protect my guy's privacy, and now I have been ec too long for me to change. I added the photo at the request of our dear peterjones, so privacy doesn't come into it anymore. Still, I like the association. Easterncedars are among my favorite trees.
The stress has had a terrible effect on my memory, too - or maybe it's all the drinking...!
Right...here goes again! Why do these things vanish? Anyway was just saying you have no idea how many times I have been tempted to sit here and have a drink. I only ever drink in company when having a meal. Yet I have been seriously tempted!
Understand why you didn't use your real name originally. I quite like the non de plume! So tired tonight so off to bed now. Very late in UK...early tomortow actually.
Marie_14
Good luck George xxxx
I do hope you are successful this time. We were on the second attempt .
Will make a big difference .
The district nurse whi now coordinates everything actually visited me this morning . TOld me to get in touch about anything That was worrying me .
Ours took over three months , I know it shouldn't have but it did . So don't be despondent if u don't hear for a while. How it will be qu I and. The right result Georgepa
I suppose I have come a bit philisophical about it all .It will either happen or it won't .You can use up alot of enery being outraged and angry and frankly I need that enery to look after V .
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