Of the following professionals (OT, Physio... - PSP Association
Of the following professionals (OT, Physiotherapist, Speech & Language Therapist, Community Nurse, Keyworker, Neurologist, Psychologist) how many would you say that you see regularly(6 months or less)
PSPA_HelenP152 VotersPlease select one:
It seems that if you get this diagnosis, you are left largely to get on with it, except when in crisis.That cant be right.
Completely agree with you,my sister was diagnosed two years ago she will be 80 this year parkinsons plus was diagnosed possibly psp, but I am more than convinced she has psp and now getting to make the parkinsons nurse agree with me,but as you say you are left to get on with it and it makes me very sad to see my once full of life sister fading away before my eyes.
Pinda, I agree with you completely,often by the time the professional gets to see you the crisis is over, or its just to late too be of any help
in my experience, the local GPs are clueless about PSP and I feel that I am driving every visit made to the surgery. Hence we rarely go now and Pinda is right, we just get on with it. However have nothing but praise for the PSPA and do not feel so helpless knowing their support is a phonecall/email away.
Tottally agree,I went back and forward to gp with my sister now nearly 80 each visit she was showing more and more sign of psp but no tests were offered,it was not until she had an accident with a cigarette and burned her hair off the hospital put her on to care of the elderly and test were done then and Parkinsons plus was diagnosed and later on they say she may have psp.She is now in full time nursing care and not speaking very much at all .
My mum and dad are so lucky, they have lots of support from all the medical proffesionals in the poll. They are always visiting and helping dad to have the best care at home possible.
hi all
I agree with the 1st 3- u r left to get on with iit adn have 2 make loud noises and keep getting back to the professionals - i know money is tight and cutbacks afftect us so much BUT it is not right that we have to fight for everything
The multi disciplinary team does not seem to exist apart from having to have a decision from each person and then back to the GP ro Social worker b4 anything is done (and re-referering the patient each time)
I am lookinng a teh "pathways model" being devleoped by the PSP to b given to ea ch professional who might ocme into contact with a patient or carer
BRILLIANT that the Psp team have devised this
dorothy-thompson
since my husband's diagnosis -
his consultant neurologist says the NHS can do nothing
His speech therapist says her "expertise" cannot help
The occupation therapist is useless
The district nurses are not interested
The Community Matron is full of suggestions but no actions
BUT
our doctor is on our side
and thank goodness for the PSP asscoiation.
I see the neurologist maybe 6 monthly - the neuro nurse about 3 monthly but am in contact via email if need - physio fortnightly privately at my gym- GP regularly - podiatrist 6 weeks OT 6 monthly but am in contact via email if need. Some of these I have set up my self e.g. neuro nurse. Marytea13
i must admit dad got diagnosed in jan 2012 by april he had psp speicalist, pysio, speach therapist, OT his gp isn't too clued up but he is getting better now he has a patient with it. already dad had been assessed for grab rails, wheel chair, 4 wheel walker, stick, he has been forwarded to the parkinsons association where he goes to the gym twice per week. couldnt thank them enough probably depends on your local council.
i see as speech therapist once a week and go to balance group as well once a wek oi see my specialist every 6 months \\ which keeps me ticking over at present no cure but still getting around peter jones queensland =Australia
I agree with Pinda and have also found that the Parkinson's nurse, physios and even my PSPA advisor have mostly only taken notes and have not been able to actually do anything for us. Everyone we need is part time and appointments are few and very far between. There is no sense of urgency despite the fact that PSP is diagnosed late and time is of the essence with any change. So frustrating. I think it depends on the age of the PSP patient as to whether anything much happens. Mum is relatively old by some comparisons at 76 but has always been incredibly fit and that is the main reason she is still with us.She literally bounce back from things. Only this week she is a literal walking miracle having gone into advanced stage after an infection last month. After another UTI last week and more antibiotics she is suddenly back to middle stage where she was before the illness in August! I know it won't last but do feel she deserves more than she gets just for her sheer determination to survive!
We found a fantastic centre in Johannesburg, South Africa, called Rehab Matters. it's a therapy centre for anyone with neurological issues - includes individual practices for speech & language therapy, OT, physio, psychologist, amputee matters, biokineticist, ENT swallowing clinic, orthotics and prosthetics, podiatrist, and a mobility centre that specialises in providing wheelchairs. They truly work as a multi-disciplinary team and are wonderful - most therapists have first hand experience of caring for someone with a neurological issue. Only problem is that there is no NHS in South Africa and it's almost all privately funded so is extremely expensive. But how can I prevent my husband (who has PSP) from receiving treatment? Have to find the money somewhere. I wish that there was an integrated centre like this in the UK where the NHS could help us to afford it.
The website for Rehab Matters is rehabmatters.co.za
i see a physio at my home here in france 3 times aweek and my neuro onece every 3 months
Have only just been diiagnosed,my neurologist thought I had Parkinsons for the last two
years.
Dor dor
i am lucky to have some good people who are truly concerned about my health spreading over from the year 2004 so i consider myself not to be disabled and i will not let this psp beat me seeing as i have had such good help trying to overcome it peter jones queensland australia psp sufferer
