How regularly do you have contact with you... - PSP Association
How regularly do you have contact with your Parkinson's Disease Nurse Specialist.
Please select one:
Generally once every 6 weeks or can contact by phone.
it took us six years before we saw a nurse . She is very nice , extremely caring but so very very busy ,. On top of that cannot prescribe herself even though poor acces to consultant .
HI CABBAGECOTTAGE
YES IT HAS BEEN THE SAME FOR ME -THERE HAS NOT BEEN A PARKINSONS NURSE AT HTEHOSPITAL 4 A COUPLE FO YEARS BUT THER E IS 1 NOW
WHETHER I GETYPSEEHER ATALL WITH THEPSP SIANOTHER MATTER
LOLJILL
My mother doesn't have a Parkinson's Disease Nurse Specialust that I know of. She has even been signed off by her neurologist as he can't offer her anymore help, although he did say we could request an appointment if we wanted one. Currently she has no Specialust support other than an experienced nursing home and speech therapist for swallowing. Coyle51
Hi Coyle51
Sorry to hear that your mother does not have any specialist support. The PSP Association would be more than happy to help you to access some support so please do contact the PSP helpline. Their contact details are 0300 0110 122 or you can email helpline@pspassociation.org.uk
The moment has passed now, as my husband has died, but locally (West Norfolk) the Parkinson's Nurses were not allowed to include PSP in addition to Parkinson's and MS and maybe one or two others, the reason given being that they were funded by Parkinson's UK.
Before the PSP diagnosis, when it was "probably Parkinson's" we had been allowed access (!) and they were very helpful. After that, it would have to be the PSP specialists.
The position may have changed as I'm talking about six or seven years ago.
Mo
My husband has never seen a Parkinsons nurse ,do they visit PSP sufferers?
iam not sur e whether they do or not i am afraid to say
i go to Parkinsons meeting s regularly a sthey are local and more convenient than th ePsp meetings and i ahv e made some friends there too
nbtu the PSP meeting safe more relevant btu more difficult for me to attned
now tha t i use a wheelchair when out sid ego prevne tmhy fall gin over `nd bringing the othe rperosn with me
loljill
hugs and xx to you and dyorurs
Present diagnosis mid-July and move to Care Home Sep but no sign of a Parkinson's nurse from Community.
