PSP Association

Getting the right diagnosis

hi i was 49 when i was diagnosed with corticobasal ganglionic

degeneration i throught thats it ill be dead before my kids have

grown up but i aint one to give up without a fight, I was first told

i had rheumatoid arthritis but that was just guess work i think

then they said i had a frozen shoulder then they sent me for

a operation for carpal tunnel syndrome on the right hand

that did nothing to improve my symptoms so i was then sent back

to the rheumatologist he injected me for a frozen shoulder again

that didnt work then he said it could be something to do with

parkinsons disease so i was sent to see a neurologist and he

sent me for mri scans, bone scans, and a dat scan then after

another year of tests he came up with the diagnosis of cbd

i know i will die sometime in the near future but i will worry

about that when it happens untill then i will keep doing

my daily exercise program that my physio set up for me

and keep doing my exercises from my speech therapist

gave me to do, I dont know whats round the corner but

we will wait and see.

4 Replies


I agree.

It took 18 monhts 4 rme from when i 1st was referred 2 a neurologist to getting the diagnosis oF PSP--and now no one has heard of it but i am letting people know!1

I just want to do what i can whilst i still can

Adn make alll practical preparations for the futureh



well said jill i have made quite a few preparations for the

future ive took out a funeral plan i made a will and i allso

done a lasting power of attorney so everything is in place

for when i do die and the family can just get on with life

with out worrying,


lpa si not easy but my cousin (my next of kin goes along with my wishes)e g brain donation already done

lpa still to b sorted - i have all the forms - a mass of stuff to get right -

did you have a solicitor to help or do it yourself?

i have got the DLA at the highest rates which helps financially

Are you on benefit - i had to apply twice for it but the diagnosis and gp and consultant's input and the psp nurse all clinched it just b4 my 65 birthdyay!


hi jill

my wishes are all written down i have also done brain

donation at addenbrookes brain bank in cambridge,

yes i had a solicitor do my lpa it was to hard for me to

understand but it wasnt cheap i think it cost about 300 pounds

you said you get DLAis that the care component , i get DLA

care component at the middle rate which was sorted out by CAB

and i get the high rate for mobility which i use for the car which

was sorted out by the parkingsons information and support worker

she was great she came round the house filled the forms in sent

them off and i got it first time,

take care



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