continuing care

[kay1]

Social Services have arranged an assessment for 3rd January to see if Frank qualifies for this allowance, there seems to be such deterioration in his condition. Without the help of the PSP I think we would still be waiting for a date from them, I am hoping they will be sympathetic to our case. There are so many cutbacks ...................

[jillannf6]

hi kay

alll the bes t for franks assessment

you do deserve it !!

lol JILL

[kay1]

thanks Jill - and I hope you and partner have a lovely evening, snug and warm x

[peterjones]

HI JILL HAPPY NEW YEAR TO YOU AND YOURS AND ALL CARERS AND AL;L PEOPLE WITH PSP I WISH FOR A BETTER YEAR FOR EVERYBODY TAKE CARE PETER JONES QUEENSLAND AUSTRALIA

[Hidden]

Happy New Year to you all. Good luck with Continuing Care. We have put in for a reassessment as mum took a total dive before the weekend and although there is a small improvement and Mum has finally shown positive for UTI after 3 days of testing it shows them how unpredictable this condition is. Maybe we can all browbeat them into realising this is a condition that has no room for cutbacks as it marches relentlessly on.

[kay1 in reply to Hidden]

Frank is still on antibiotics for the UTI, but I notice now that he is developing the rigid neck, and he is always gazing upwards, he has also been diagnosed with the Cheyne Stokes breathing - visiting just doesn't get any easier..............

[giblet]

We tried for Continuing care again back in October..and although my Ma in Law now only weighs 45 kilos and is 5ft 10"..We still got a knock back..The fact of the matter is you litterally have to be on your last legs (or have only 12 weeks left to live) to get it..I sincerely hope you have a more succesful outcome.....We are now paying nearly 4k per month and she has been in a nursing home for the past 3 years......I have absolutely no complaints about her care but she has no quality of life at all..Good luck and Happy New Year..Lynn Milsom. x

[kay1 in reply to giblet]

Frank has reached another level with the PSP, but I am not holding my breath to get the allowance. At least Social Services will be aware once again of the PSP, Frank has been in care since july 2011, he is now 90 and like you we are fully self funding, just doesn't bear thinking about. All the best wishes for the New Year

Kay x

[giblet in reply to kay1]

Hi Kay...I am not that clued up about the different levels..Moyra cannot speak at all and is as stiff as a board, she manages to swallow small amounts but makes some pretty scary faces when she finds it difficult..She is 79 and has had it I would say for the past 12 years, I first met my husband then and the first time I met her she had a whispery voice but as i didnt know what she sounded like before thought that was normal..She has never been formally diagnosed with PSP it was the social worker who said she had it when she was assesed for CC..She was very OCD when she lived alone and apparently that is a tell tale sign too...Good to hear from you Kay..We are in Ashtead in Surrey..Where are you based ? Bye for now..Lynn x

[kay1 in reply to giblet]

pspinformation.com/disease/...

I found this site which is pretty good at making things a little clearer, but as we know PSP makes its own mind up. Franks was diagnosed 2008, consultant said PSP - shut the door on your way out. I joined the PSP association who have been helpful and through them I have the CC assessment arranged. Frank still tries to speak and gets so frustrated because we haven't a clue what he tries to say. I am in Hemel Hempstead and lucky enough to have family all living close.

[kayley21 in reply to kay1]

hi kay,my name is wendy i live in birmingham,i am very sad to hear about frank as i no how awful this disease is.my dad sadly passed away almost 4 yrs ago his weight went down to 4 half stone he couldnt speak or do anything for himself,he was in a nursing home the last 2 yrs of his life just use to lie in bed or sometimes in a recliner chair and just screamed to get attention.the biggest shock for me and my family was when my mom who was in the same nursing home as my dad with parkinsons disease was also diagnosed with psp and we were told she had neva had parkinsons it was psp all the time,sadly she is now in the final stages and like frank we cant understand anything she said,she to gets very frustrated with this.my mom as to have all her food liquidised thick n easy in all her drinks but still continully coughs n chokes a lot which is very scary,she is extremely rigid got dry eyes and is almost blind cant walk or do anything for herself anymore.we have been told by the doctor that she wont last another 12mths and if she gets pneumonia she wont survive.This year going to be very hard and i live in fear everyday that i will get a call from the home saying something has happened to mom.Dr nicholls as told us as far as he is aware my mom and dad were the only living two people in one family that as psp and its a 50 billion to 0ne chance of us having both parents with the same disease as psp is so rare.i realy hope frank gets all the help he needs and so much desreves,is frank stil able to live at home?

[kay1 in reply to kayley21]

That is really so sad. and there is so little understanding from other people as to the disease. I go to bed at night anticipating another phone call. I have been in touch with the helpline on the PSP helpline and a very understanding lady has listened to me, and given practical help. I am finding it difficult to come to terms with the change in Frank's behaviour, my daughter just tells me it is the PSP. He is to have blood test as to why he is losing weight - I know the reason PSP again. I hope you have other family helping you cope, you do need someone to be there for you.

Kay x

[giblet]

Hi Kay..I made an alphabet board for Moyra and until recently she could (very very slowly) spell out a sentence..Not so now..I did A E I O U down the side of a sheet in red and then the rest of the letters following in Black..It may help Frank..The other thing you could try is holding his hand and pointing to letters and get him to squeeze your finger when you get to the right letter...I have honestly thought that Moyra would not make another Christmas 3 years ago.....The older generation are made for very stern stuff..moyra has been vegetarian all of her life and has only ever taken homeopathic remedies..She takes absolutely no medication whatsoever..When she lived alone she was like Miss Haversham..She would only let us visit peiodically and then sometimes she would not answer the door anyway..When we eventually got into the house by calling the police to break her door down, it was discovered that she had a broken hip and had actually broken it 6 months before..Never told a soul and and that is why she wouldnt let us in..She was terrified of going to hospital.....Dignitas for me I am aftraid....No way I am going to die inch by inch..Bye for now love and take care..xx

[kay1 in reply to giblet]

i only have to sneeze once, and my daughter is making enquiries about flights to Switzerland

kay x

[giblet]

I was visiting Moyra yesterday and the Sound of Music was on the TV..I thought "bugger me that's a bit ominous " !!...Although by all accounts Dignitas is on an industrial estate and not among the beautiful scenery of Switzerland..I will be passed caring by then anyway...Its good to talk Lynn xx

[villagebabe]

Good luck from another psp patient!

[villagebabe]

I have tried to post before with no success but here goes,,, this is coming from an early, (i. Hope) psp patient so. Far I think that the hardest thing at this time is that I know what is going on in spite of the fact that my body and mind are slowing down

[kay1]

you have made your postings, well done. I am sure you will find help from carers and PSP patients, just keep in touch x

[jillannf6]

H village babe

I have PSP and would like to

Welcome,you n2 the site

It is not easy coping with it

Plz read may details imam still here afterv being dxd dec 2010

Loll jill