hello can i just say a big thank you to you all who replyed to my post yesterday. its so nice to know there are so many people

who understands this horrible condition and the patients needs.A social worker came for the first time the other day to see day about the peg when i asked him if he knew what dad had he said {never heard off it] THIS MAKES MY BLOOD BOIL ,so how could he sit there and advise us the peg would be a good option for dad so i just told him to go away and come back when he reads and learns about psp, then he went on about does dad have any bruises and once again i said all psp patients have because they keep falling

he just sat there looking like i was stupid ,luckely for us dad never has bruises because he is never on his own there is someone with him 24/7 or we would spend all day picking him up off the floor.

well thats me rant over for today il let you know the out come of this meeting about dads peg

love to you all x

28 Replies

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  • I Am on your side. How dare the so called professionals not know about psp. They should prepare themselves before a visit and read up on it. We had to!

    Good luck to you, it looks like you are at the same stage as my lovely husband Geoff. X

  • i agree-if a professional person is going ot have any valuable input they need ot know about PSP

    lol jill

    ;-)

  • One question that always annoys me, and every professional askes it, " How often does he fall over". They should ask, " How often have you saved him from falling". If I reply he has only fallen once this week, they say how good that is, as if there has been an improvement. I've started telling them what they should ask now but they still forget by the next time we see them. Well, that's my rant over as well.....I feel better now.

    Best wishes all,

    Nanna B

  • I SO AGREE WUTH oIU - MY NEURO ALWAYS ASKS THIS AND MY HUSBAND ALWAYS SAYS THE SAME THING - THAT I WOUlD BE FALLING OVER ALL THE TIME IF HE DID NOT StOP ME

  • To add another rant. I had a "falls assessor" ring me from the hospital to assess why my husband kept falling! I asked her if she had heard of PSP. She replied she had it was in my husband's notes. When asked if she knew what it was her reply was no. I suggested she read up about it and ring me back when she had. That was 12 months ago! Haven't heard from her since! I get angry when thinking about it.

  • To be honest I think this was the side of things that ground me down the most! I had to basically educate EVERYONE I met about PSP and I always wondered if I was just whistling in the wind as I got nothing but blank looks from some people as if I was making it up! As if you could! The worst occasion was when mum had hip contracture and the nursing home had to call the GP to get permission to give pain relief whenever needed. The GP asked me at least twice if mum had suffered a stroke and 3 or 4 times I had to say 'It's the PSP, describe the effects of PSP and explain that's what it does to you' GRRR! Admittedly he was not the GP we usually saw but it transpired in the conversation that he had not even bothered to read mum's notes before he came out! The second time I was angered by a GP was when mum had dropped into end stage overnight and woke up unable to do anything other than blink for herself and the GP decided to revisit the DNR scenario, trying to get mum to answer questions about resuscitation wishes. Poor mum looked shell shocked and bewildered and must have thought her last day had already come. I had to keep saying to her that she wasn't going to die today, it was just information they needed for their records! Mum kept blinking a yes to being resuscitated, bless her and after something like 20 minutes he came away and said to me as he walked up the corridor that he would overide that anyway given her immense heath problems and was aware that we had agreed as a family and had it put in writing that it would be wrong to resuscitate mum at this point of her illness anyway. So I wondered why on earth he had put her through that in the first place when she was obviously already feeling very frightened and pretty poorly to boot! Keep posting we are all here for you xx

  • THAT IS SHOCKING - TI PUT YOUR POOR MUM THROUGH THAT AND THEN HAVE THE NERVE TO SAY HE WOULD OVERRIDE THAT TO BOOT

  • Sasha . Can u remember if when you were Eventually diagnosed PSP and you came off Parkinson's meds . did it affect you in any way please .

  • Cabbage, I've heard that coming off Parkinson's meds needs to be slow. When my wife came off we stepped down one or 1/2 pill a WEEK until she was off the med.

    I've heard that coming off too quickly can have adverse effects.

    Jimbo

  • hello cabbagecottage - i came off the meds straight away as i was in hosp and it had very little effect on me - i have since gone back on modopar twice a day as my nero said it may help with the neck pain

  • did you have power of attorney ? It's a minefield isn't it . And IT'S NOT FAIR !!!!!!! stamp of feet that's my rant over for today as well

  • Careful, sounds like they might be setting you up. Asking about bruises could mean they are trying to show he is not well cared for and THEY need to take over his care, including a PEG.

    Jimbo

  • I know how you feel! i had my father in laws doctor on the phone asking about PSP!! I told him goggle it like I did. My father in Law has changed so much over the past few months. We had to put him in a nursing home for 4 weeks while we adapted the house to suit his needs. He is now unable to walk and gets very aggressive with his wife who is his main carer. He is also so impatient when he wants something and you don't go to him straight away he shouts. One thng we have noticed is that his swallow has improved and he is eating things now that he couldnt 6 months ago. He was advised by his neurologist to have a peg fitted and he decided against it. I am so glad he did now. Have to agree this forum is a great help.

  • I am being wise in hindsight, but hope it may help others who are coming new to the site. Having had a career in nursing I was wise to the possibility of medical staff not knowing about the condition, so I went armed with information from PSPA to our GP. He did confess to not knowing about the condition but he did obviouslyy read the information and must have put something on the computer because whenever I phoned for help it did not matter who spoke to me, they all knew what was going on. This made it much easier to get the support we needed. from the GP. I think possibly my neck of the woods know about this condition more than other places. Please always go armed with information leaflets for the various professionals you may have to meet with (available from PSPA) and get teh advance directive and power of attorny sorted out earlier rather than later, it smooths the path when the going gets realy unbeareable. It may be difficult to discuss all this with your loved one, burt once it is out of the way you can get back to one day at a time Oh, and make sure the Advance Directive goes in their medical records and at the GP surgery. I lost Chris just over a year ago and it still hurts but getting these bits of officialdom out ot the way certainly helped for us. For yor loved one's beneift they can always change their mind about their decision on the Advance Directive but it helps so much when they can no longer talk. I thought i got mine from the internet and will try to look it up and post it later. it is so simple to fill in if you can find the pro forma. You do not need the services of a solicitor. Even the written sentenece "i do not want a peg tube inserted" and signed and dated will do. Teena2

  • I DO NOT WANT A PEG INSERTED AT ANY STAGE OF MY ILLNESS

  • I DO NOT WANT A PEG INSERTED AT ANY STAGE OF MY ILLNESS

  • I HAVE PRINTED THIS OFF AND HAVE NOW SIGNED IT

  • Thanks of the reply Sasha . I have occasionally reduced his Sinemet and he has kept more awake then I get afraid and start them again . He uses Rotigotine patches also 6 mg I would have tried reducing the dose gradually to see what happens but don't have any lower ones . Our consultant has retired and the man who is taking over until a new one is selected keeps telling me he is doing really well and keep on . He doesn't come home with us.

    This hot weather has been a killer for him , it's much cooler this morning thankfully .

  • I believe Madapor is similar to Sinemet . In fact John had a painful shoulder all his life until taking them it's the only good thing I have found that Has helped his shoulder but nothing else .

    How are you doing since coming off the meds

  • i am fine - in as much AS I CAN BE WHAT WITH BEING UNABLE TO WALK WITHOUT FRED HELPING ME - I AM LOOKING FOR A MOTORISED WHEELCHAIR WHICH WOULD BE SUCH A BOON TO ME AND FRED !!

  • John is not so good , He woke at seven he needed the commode and I managed him really well , he sidled over from chair to chair .I gave him his Sinemet Plus an hour ago and now he is completely frozen ,it was the reason I had started to reduce them .

    He is confined to his armchair and we use a commode chair now because he cannot get in and out of the toilet because he cannot stand or turn corners . I can't do right for doing wrong with the medication .

    They have never ever tired anything different to Sinemet or the Rotigotine .

    He Lao has extremely painful knees which makes it harder for him . Did you feel better when coming off your medication

  • HELLO CC - IT IS COMPLETLY SHOCJING THAT YOU HAVE NOT HAD ANY OTHER HELP WITH HIS MEDS ARE YOU IN THE UK ? YOU MUST GET SOMEONES ATTENTION - AND FAST !!

  • Thanks once again for your reply Sasha . Yes we love Nr Newport . South Wales .

    We have been getting to see the Dr at the care of the elderly has been every 4 months but he has retired . I am going to ring tomorrow to see if they have at last replaced him . .The NHS is going Belly up .

    I have tried juggling the doses and timing of his med but no difference other then worse . I don't play about toooo much though . have been afraid . I don't think he could be much worse if I stopped them all but don't want to take a chance . He is so bad now I would be able to get him to the hospital anyway . I will make an appointed and my daughter will go with me on our own

    It is so stressfully as well as frustrating . I have two carers coming in at night to help him onto the stairlift and then onto a wheelie commode chair to the hospital bed but have brought the commode chair downstairs at the moment . It's why we have both been sleeping downstairs until I can get carers in for the morning as well . I manage all his needs but am now really struggling with moving him from chair to chair .

  • all i can say is the very best of luck to you - i am so lucky in living in france where the health service is amazing #

    but we are trying to sell to get back to the uk - pembrokeshire actually - as my husband is 77 and needs to be able to feel that he is not alone

  • Do you originate from Pembroke , it's a love area .

  • no i am a londoner but my mother was welsh and we spent all our holidays in wales

  • Ihave psp and I do choke sometimes I go to speech therapy and they do help. they put an electrical thing on my throat called vitalstim and this helps my swallowing. try speech therapy it helps.

    Barbara daughtrty

    mombcd1@yahoo.com

  • Hello MrsFarringdon ! Well we had the same problem too with my Mom. Even with consultants in the hospital who didn't believe PSP was a "real" disease.

    With carers/social workers etc it's understandable they don't know much if anything about it, I had absolutely no knowledge of it until 2005 when Mom's Parkinson nurse came with a little photocopied brochure from the newly-formed PSP Association and said I think this is what your Mom has. Even her consultant didn't mention it !! There are so many diseases - I guess they have always existed but were lumped in with other syndromes - and the average healthworker may never come across a patient in PSP in the whole of their career.

    With doctors and consultants though, given the hard work the PSP nurses do to promote awareness of PSP, there is no longer much of an excuse, not in 2013. But don't get upset - all we can do is to help promote awareness and knowledge of this awful disease. I wrote notes (as if they were written by my Mom) detailing what she could and couldn't do for herself, and how she felt, for carers and social workers. I also printed off notes from the internet and the PSPA giving more detailed medical notes about the disease, for nurses, doctors, GP's etc.

    It's good to get it off your chest on this forum. I found it invaluable though it was only available towards the end of Mom's fight. It's a wonderful resource.

    Much love to you both,

    Jane

    xxxx

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