I am feeling more positive tonight , I feel I am in the system and on the radar.
Today we went to our new surgery . Dr had never heard of PSP but before we left she had promised to look up the website of the psp association, write to social services and carers association, organise occupational therapy visit and refer my husband to a neuro physiotherapist and organise ocasional day respite to give me a break. A whole lot better than my previous GP who told me to get in touch when I could no longer manage. This positive response with all your helpful suggestions and supportful blogs will keep me onwards and up , my grateful thanks to you all .
Written by
gypsywoman1947
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I am glad that your new gp is looking like they will be there for you both. Now that you've been referd get yourself a big diary so you can keep notes and all the hospital appointment in it. don't just rely on your memory because it's surprising how much we forget. Hope you dont have to wait to long before you get seen by all the necessary people. Janexx
NANNA B HI COLIN HOW ARE YOU TODAY WELL MATE I HAD THE ROOF AND DRIVEWAY PAINTED IT LOOKS PRETTY GOOD IN CHARCOAL COLOUR MATE IT LOOKS LIKE A NEW HOUSE NOW ]] WELL OLD MATE HOW ARE YOU DOING TODAY GREAT I HOPE I FELL OVER IN THE KITCHEN BUT LUCKY I NEVER HURT MYSELF JUST MY PRIDE
WE HAD TO GET THE BLOKE FROM OVER THE ROAD TO COME AND GET ME UP I AM TO BIG FOR MY WIFE TO GET ME UP NOW AND I FIND IT HARD TO GET UP BY MYSELF MATE BUT NEVER MIND HOW ARE YOU KEEPING THATS THE MAIN THING SEE YER MATE TAKE CARE NANNA B AND COLIN I KNOW YOU WILL NOT MIND READING THIS TO COLIN FOR ME NANNA TA PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER SORRY TO -BUTT IN THERE MATEY ON YOUR REPLIES
I THINK IF I HAD STAYED ON THE KITCHEN FLOOR LONG ENOUGH SOMEONE WOULD HAVE THROWN A SADDLE OVER ME MATE
Once you are in the "system" it makes all the difference - they are the professionals but here are your friends who will help you through the dark days . Georgepa
Yes I already realise that here are my friends, and I read that you and so many others are in a worse scenario than myself and that there is worse to come ....but it's so good in a way to read that you all seem to cope no matter what and pass on all this helpful info. I was so frightened before I started to read these blogs. I'm not good at nursing , I thought I'd never cope, but now I feel someone out there will have an answer for me when i need it. X
One point of caution, who ever you see, if you don't need their services now, DO NOT let them discharge you. (They will try). Keep saying this is a Progressive illness, keep saying that the next fall could cause your husband to need all help available. We had social services around today, doing an assessment on S, he kept trying to say contact me when your ready, but I kept on with the falling can change everything in a split second. Eventually, he realised the problem and promised to keep us on his desk. You don't get a individual social worker anymore!
Enjoy your first battle win, but don't take off the boxing gloves!!!
YOU DO NEED OT KEEP THE SOCIAL WORKER ON BOARD IF AT ALL POSSIBLE - THEY R V SHORT - STAFFED NOW AND IT IS NTO A DOABEL JOB ANY MORE BUT HEY NEITHER IS CARing FOR SOMEONE IWTH PSP!\
IT IS NOT EASY OT KEEP RE REFERRIGN YOURSELF NBTU IT HA S OT EB DONE WIHT THE OTs IWHT THE PHYSIOS etc etc and the social worker can be assign dot anothe role within the LA and lose you - u can easily go off the radar in this case
Duly noted..Thank you so much, that's the hard part at moment..my husband appears ok to some visitors if he sits in the chair and doesn't move while they are here.I see the difference in past 6 months and its the progressive bit that was panicking me into how was I going to get any help.x
Glad you have got a got GP at last and yes keep your boxing gloves on sometimes it makes you feel a bit pushy but that is what is needed have a good week end Yvonne xxxxx
So pleased that your GP is on board and willing to research PSP and help you. We are lucky that our GP is such a marvel and actually berated me when I didn't yell for help until I was totally at rock bottom and basically running on empty!! Our social services and Independent Living people initially offered so much help that it was too much (some of which I feel maybe necessary in time) - they therefore did a list of what I wanted now, what I thought I might need in the future so that it is in 'my file' so to speak and will be given as and when I request it - perhaps your people would also consider that for you - it means I don't have to worry about future needs as they are 'reserved' and we will not be discharged from them whilst stuff is outstanding. If you haven't got your benefits sorted, can I suggest you speak to your local PSP Specialist Care Advisor - you will find out who from the PSP org website, they can arrange for someone with all the knowledge to visit, with the correct forms, and also advise of things you may not have known about/considered. I have to say that having all this dealt with by someone else with some input from us has been such a help - leaves me free to concentrate on the caring side.
I hope you have a choice of the type of respite you can have. I can ask for my husband to go into a local hospice for a night - week as felt needed, then there is the people who learn about PSP and volunteer to sit with the person with the condition, whilst their carer (usually a partner) has a half day to themselves to do something for themselves and/or to sit in whilst you do the weekly shop without worrying all the time you are away from home that all is ok.
Take care, wishing you well and hoping to hear updates from you. This condition is nasty, however I like to look at the good things and the best my husband gets from each day rather than dwelling on the down things - difficult sometimes but well worth persevering.
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Thank you all.
Thank you.
'We all fight together' Song Released in aid of PSP
Thank you!
