Can anyone help/advise me? My dad was diagnosed with PSP 2 years ago we have seen a marked deterioration in his health since Christmas

This is putting significant strain on my mum herself diagnosed with Parkinson's 5years ago . Social services are coming later this week to do an assessment. What do I need to ask about to try and get some sort of help for them? We are getting so frustrated by the lack of advice from the health service. Dad also has constant neck pain and finds it difficult to hold his head up is this linked to PSP as his GP doesn't think so.

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  • Hi i have psp And wonder if U have seen ur neuro lately with ur dad . u need to get your mum on board Too as she has Parkinson's lol Jill

  • Hi i have psp And wonder if U have seen ur neuro lately with ur dad . u need to get your mum on board Too as she has Parkinson's lol Jill

  • Hi i have psp And wonder if U have seen ur neuro lately with ur dad . u need to get your mum on board Too as she has Parkinson's lol Jill

  • Hi i have psp And wonder if U have seen ur neuro lately with ur dad . u need to get your mum on board Too as she has Parkinson's lol Jill

  • Hi i have psp And wonder if U have seen ur neuro lately with ur dad . u need to get your mum on board Too as she has Parkinson's lol Jill

  • Hi i have psp And wonder if U have seen ur neuro lately with ur dad . u need to get your mum on board Too as she has Parkinson's lol Jill

  • Hi i have psp And wonder if U have seen ur neuro lately with ur dad . u need to get your mum on board Too as she has Parkinson's lol Jill

  • Hi i have psp And wonder if U have seen ur neuro lately with ur dad . u need to get your mum on board Too as she has Parkinson's lol Jill

  • Hi i have psp And wonder if U have seen ur neuro lately with ur dad . u need to get your mum on board Too as she has Parkinson's lol Jill

  • Hi i have psp And wonder if U have seen ur neuro lately with ur dad . u need to get your mum on board Too as she has Parkinson's lol Jill

  • Hi i have psp And wonder if U have seen ur neuro lately with ur dad . u need to get your mum on board Too as she has Parkinson's lol Jill

  • Hi i have psp And wonder if U have seen ur neuro lately with ur dad . u need to get your mum on board Too as she has Parkinson's lol Jill

  • Hi i have psp And wonder if U have seen ur neuro lately with ur dad . u need to get your mum on board Too as she has Parkinson's lol Jill

  • Hi i have psp And wonder if U have seen ur neuro lately with ur dad . u need to get your mum on board Too as she has Parkinson's lol Jill

  • Hi i have psp And wonder if U have seen ur neuro lately with ur dad . u need to get your mum on board Too as she has Parkinson's lol Jill

  • Hi i have psp And wonder if U have seen ur neuro lately with ur dad . u need to get your mum on board Too as she has Parkinson's lol Jill

  • Jill, Did the key stick on your computer? lol I see many, many postings of the same message from you above.

    Jimbo

  • Hello Jillan, my name is Richard Koe, my mother had PSP. Have you tried contacting the PSP Association? They should be able to guide you to best local care? sincerely, Richard

  • We saw him about 3months ago. Mum saw her consultant just after, she also has support from Parkinson's nurse. Thanks for your response.

  • Hi, I don't know what part of the world you are in, all government agencies seem to have different services available. I would ask about homecare, and safety bars and such in the bathroom, if those things haven't been put in place. See if there are meals that can be delivered, here we have "meals on wheels", not sure how often they come around but it helps. Ask about financial programs for disabled persons. Your medical team should be able to help answer some of your questions too.

    About the neck...I think it is PSP related. My husband has terrible neck pain, and the health professionals assume it is arthritis.

    joan

  • Hello Joan, my name is Richard Koe, my mother had PSP. Have you tried contacting the PSP Association? They should be able to guide you to best local care? on the website there is a PSP helpline 0300 0110 122. Yours sincerely, Richard

  • hui gracie

    ia m orry about the multipel responses to your quesiton

    sent from my iphone which ehlps a bit with my dyslexic typing

    if you saw your neurologis t3 kmonths ago is he aware of th declien in you rdad since hten??

    mine tends to esee me onlhy every 8 months as a check and not much more

    in the uk the clinics are so full!!

    ;lol JIll

    :-)

  • Hello Jill, my name is Richard Koe, my mother had PSP. Have you tried contacting the PSP Association? They should be able to guide you to best local care? on the website there is a PSP helpline 0300 0110 122. Yours sincerely, Richard

  • where r u ?

    in teh UK??

    loV JILL

    A A BIG HUG TO UYOU ALL

  • yes we are UK based. Dont worry about the multiple replies, just glad to hear from someone. We have had some support but things seem so much more exaserbated by the fact that both of our parents are struggling significantly and there seems little joined up thinking from the agencies involved.

  • Hello GracieG, my name is Richard Koe, my mother had PSP. Have you tried contacting the PSP Association? They should be able to guide you to best local care? on the website there is a PSP helpline 0300 0110 122. Yours sincerely, Richard

  • Hi Gracie

    I am sorry u r not getting the help u need

    The nurse from psp will help u their really good at dealing with these matters lol jill

  • Hi Gracie

    You never said a truer word, there IS DEFINATELY no joined up thinking from all the agencies concerned.

    dorothy-thompson

  • Hello Dorothy, my name is Richard Koe, my mother had PSP. Have you tried contacting the PSP Association? They should be able to guide you to best local care? on the website there is a PSP helpline 0300 0110 122. Yours sincerely, Richard

  • Hi Gracie,

    It might be worth asking if there is someone who could take on the role of "case manager" for your parents, perhaps a Neurology Community Matron if such a thing exists in your area? That person's role would be to be the main point of contact for your parents and your family and would coordinate the various services. It may be that the Parkinsons Nurse could take on this role.

    I would suggest you ask Social Services about what equipment can be provided, what adaptations can be made to help your parents to cope more easily, what benefits might be available to them, for example Attendance Allowance, what services they can offer in terms of help in the home (carers to help get Dad up and put him to bed) and what services they can offer outside the home (day centres). If your parents are struggling with food preparation and have a freezer then Wiltshire Farm Foods might be an option if the council don't do Meals on Wheels. Dad used this service for a couple of months last year and was pleased with the quality and value of the meals. Most of the meals can be cooked in either an oven or a microwave.

    Hope the above helps and that you get some answers!

    h

  • Hello H, my name is Richard Koe, my mother had PSP. Have you tried contacting the PSP Association? They should be able to guide you to best local care? on the website there is a PSP helpline 0300 0110 122. Yours sincerely, Richard

  • Hi, The first question is if your dad has had any surgery or been under anathesia for some reason. There can be a drastic change in PSP patients after having gone under surgery/anathesia. I verified this with a realtive who administers anathesia to patients. He said that often patients with brain disorders (PSP, Alzhimers, etc.) don't bounce back to where they were afterwards. Perhaps this isn't the case for your loved one. PSP is a very unpredictable disease and each patient can vary in progression and in symptoms. I've heard that some patients reach plateau for a bit then decline to a new level quickly. Neck pain and stiffness is a symptom of PSP. Each time we go to the Neurology department at the University they take their hands and turn my wife's head back and forth to check the extent of stiffness. At the moment hers isn't ultra stiff. Another symptom is that the neck will come forward to a point where the chin is resting on the chest OR tilt backward quite a bit. These are symptoms of this terrible, terrible disease. May God be with you in the struggle.

    Jimbo

  • Hello Jimbo, my name is Richard Koe, my mother had PSP. Have you tried contacting the PSP Association? They should be able to guide you to best local care? on the website there is a PSP helpline 0300 0110 122. Yours sincerely, Richard

  • i have ot say JIM that i cannot agreee with u on the surgery and anaesthetic question - as u knOw i had nearly 2 hours fo susgeyr b4 xmas for a tumour (breast cancer invasive type) and recovered v quickly from it. DITTO THE RADIOTHERAPY WHICH FOLLOWED.

    so i tis not all gloom and doom with PSP or any other ailments we have - i have age -related osteo arthritis (neck /back//knee /ankel/ foot/ and wrist pain ) but i deal with it with paracetamol

    SO GRACIE I TMAY BE THAT YOUR DAD IS JUST GOING THE WAY FO THE ILLNESS IN A QUICK WAY- NO COMFOR TI KNWO BUT THE PSP NURSE WILL ADVISE YOU BEST (a haines is the appropriate perwson forTHE NORTH WEST/ MIDLANDS / N IRELAND

    LOL jiLL

    -)

  • My husband was diagnoised with cbd/psp in june 2012

    My Daughter was a great help in gettting things organised for him through social services she phoned every day until she got answers our gp was not very helpfull at the time she got an appointment with gp and said she wanted further investegations done also asked for the hospice and pallative care plus matron involved in his care this all happened very quickly We are now happy with the care and support we are given but it was a hard battle for my daughter who has 2 young children youmust not give up or have you anyone who could get all the help you need put in place as you need it in our case my daughter kept on daily hope things will get sorted for you judy F

  • Hello Judy. First of all, bon courage to you and your family. My mother had PSP almost 20 years ago and before she died she and my father set up the PSP Association. Our family has handed over the running of the Association to 3rd parties some time ago (5 years), but I am still a Trustee. My understanding is that the Association have a Helpline which can put you in touch with specialist care advisers (who in turn can help you access a 'pathway of care' which identifies different carers and specialists for each stage of the disease). Have you been in touch with the Association? Obviously it would be good for us to know your feedback. Anyway, I hope you are finding some solutions and assistance. Yours sincerely, Richard Koe

  • Thanks Richard

    Yes we havebeen in touch with the association we found it very helpfull the amount of information we were given was amazing MY SON AND SOME OF HIS FRIENDS RAN THE LONDON MARATHON ON SUNDAY TO HELPRAISE MONEY FOR THE ASSOCIATION AND TO ALSO RAISE AWARNESS YOURS SINCERALLY JUDY LINNANE

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