getting diagnosed wiTh PSP

[jillannf6]

Hi I am 65 and was diagnosed with PSP in December 2010 and have felt so much better now I know the symptoms are not ME but the disease!

I had fallen and fractured my ankle badly 4 years previously and was falling over on a regular basis plus handwriting and co-ordination problems etc. etc. and the eyes closing and not blinking

So despite living on my own with my cat i am happier now with a good anti depressant to help me and have got through the winter sorting out care/ walking frames etc and accepting help from anyone who offers it.

I really have no idea when I shall become incapacitated - any ideas as it is such an individual disease?

Thanks for reading

Jill Friar

[HannahDaykin]

Hi Jill,

I'm sorry to hear that you've been diagnosed with PSP but I'm glad you can share it on here.

I know exactly what you mean when you say that it is the disease and not you! It must be so frustrating for you. Hopefully we can all provide you with some support- you're not alone in this. My Dad also has PSP and I know that the falling is particularly frightening.

In regards to your question I can't give a medical perspective/ opinion on it however I think every case of PSP is different so it would be hard to say exactly. I think your neurologist would be able to give you a better idea.

Hannah

[PSPA_HelenP]

Hi Jill,

Glad you are doing well, it makes such a difference to finally get a diagnosis!

Remember that not everyone gets all the symptoms of PSP, so you dont have to dwell on what might be, and just make the most of what you've got!

[jillannf6 in reply to PSPA_HelenP]

yes

Helen that is so right

i may not get all the symptoms = the neurologist prob does not want to commit either

i may have 5 years from diagnosis (an average i know)..

jill

[jillannf6]

hi all

i saw the neuro again yesterday and i am sure i am walking better and def f\alling less

Eyes and fine motor skills and miy speech is worse but i am positive about having a couple of good years yet...

Frustration is the real problem when i drop and break things and cannot do a simple thing like a button and cannot express myself coherently

i am exercising a little more which i have always;;loved doing

take care and love jill