My father has been treated for Parkinson's disease for a number of years but has not responded to to treatment and is degenerating rapidly. The local NHS trust have said they have tried all treatments and have discharged him from their routine check-ups.
As part of this my mother was visited by a specialist nurse. After looking at my dad and talking to my mother she said she believes he has PSP. My mother and myself have looked into the classic symptoms and he matches every one.
The nurse reported this back to the healthcare team and they have refused to do any more, just stating he has a Parkinson's like illness and they have tried all treatments.
How do we get them to test for psp? She will get more help from the community nurses with a confirmed diagnosis.
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Doncaster_Rover
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To add to Doglingtons reply tell your GP to ask for a neurologist who specialises in rare neuro diseases I.e. Parkinson plus syndrome. You don't want an ordinary neurologist you want one who specialises in rarer diseases such as PSP and CBD. Kevin has a number of posts which will point you in the right direction.
I agree with doglington and Kehn. Visiting a neurologist is essential. Usually a neurologist familiar with Parkinson's disease (PD) usually has had some patient with PSP.
By private internal mail I send you a list of symptoms of PSP based on their progression in the time that I have been collecting.
Also I send our experiences with PSP.
All with the hope that this could be of some help to you.
She needs to be seen by a tertiary neurologist. These are the ones local neurologists refer people to when it is complex. The tertiary neurologists have access to a lot more diagnostic equipment. It's a case of going back to the GP and I would hand them a list of symptoms ticked for everyone she has. You can find that here
It's not acceptable to close a case because the person has not responded to treatment.
The PSP helpline gives good advice. (Superb)
Helpline: 0300 0110 122
There is no treatment for PSP and CBD (excepting those few who respond to Parkinson's drugs which I guess is what they've been trying.) However having a good diagnosis not only brings some peace of mind as to what you might expect, it also gives you a pathway of care.
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Mother-in-Law 71 diagnosed with PSP
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