Has anyone been told that they have ( PAGF ) pure akinesia gait freezing?

[camper]

[shasha]

NOPE - WHAT DOES IT MEAN ?

[drew410]

I have just tried to search it and nothing comes up. Does it go under another name?

[camper]

Hi shasha and drew410 I should have explained. I was diagnosed with parkinsons about 5 years ago mainly due to the fact that I was very slow in movement and my writing was small. Because I didn't have a tremor I was sent to Addenbrookes to see a neurologist and last year I was told I didn't have parkinsons but I had this PAGF. Even the parkinsons nurse didn't know what this was. I keep freezing and then I fall . I've fallen so many times now I've lost count. This is my problem I just wish I knew someone who had the same problem. Everytime I fall it puts me back. If you put pure akinesia gait freezing on google it should come up! I'm also on the PSP website as I wondered whether I had PSP but reading the comments on there the only sympton I have is the sticking and falling.

[Ken_Butler in reply to camper]

I too have been to Adenbrooks and been diagnosed with PAGF and have exactly the same symptoms as you.Who did you see? I saw Dr Rowe he said almost immediately that I didn't have PSP which was a big relief. I am taking Amantadine 200mg twice a day which seems to help with the freezing. Bit early to say if it will continue to get better as I have only been on It for about 2months

[Pete-1]

If you Google with the full phrase rather than the abbreviation then PAGF is described.

[jillannf6]

hi camper

i have PSP and have real problems with freezing/ teetering on my toes and hten throwing myself fwd

my handwriting is illegible,

i cannot co=oridnateandnad do up zips/ butttons/ cannot reach ot my feet to put sock =s on etc

drop adn break lots

cannot swim ro marhc with arms as my hand and leg co ordn has gone

cnanot clap - just twice when asked

my eyes r v dry as i am closign themand not blinking and have lost

abti of vertical downgaze

muy speech is garbled and much quieter

bUt it is thefalls which r so distressing for me and anyoen who is desperate to pick me up if i do fall in their presence outside

llove jill

[Dennis]

Wishing you the very best and that you are able to find all the answers you need. Best wishes, Dennis

[camper]

Hi jillann

I haven't been told I have psp as yet but I have all your symptons except the eye problem.

Today has been a bad day.I wouild have fallen several times if my husband haden't been behind me. I sympathise with you as I know how you feel.

We just have to keep goingand hope for the best!