PAGF

[Ken_Butler]

HI all I have been diagnosed with this wierd problem (pure akinesia gaite freezing) after first being dx'd with Parkinsons then PSP. I am on 100 mg of Amantadine 4 times a day. Does anyone else have this problem and how do you cope?

[Hidden]

Does akinesia gait freezing mean that you cannot walk or stop for no reason when trying to walk? That is my problem and it is very upsetting. It is frustrating to not just move when you want to. The things I have tried are: using a laser level from Home Depot to try to step over the line as I walk. are you on sinemet? The sinemet makes it better when I take it, but at my stage of parkinsons, it wears off fast. Many times I can't get through a doorway without freezing. If you step sideways first or lift your foot without stepping forward first, it may help to get you started. It is complicated but I recently had DBS surgery and it seems to have helped with the problem somewhat even though I read that it doesnt help with the problem.

[Ken_Butler in reply to Hidden]

yes thats exactly how I am. I have taken to a wheel chair when I go anywhere like an airport or any place where there is likely to be a crowd. I also have a laser cane which I find very useful.

[Hidden in reply to Ken_Butler]

I know how frightening the situation can be. I was afraid that I would not get out if there were a fire at night because when I really need to move it is worse. I have been in a store or outside and couldnt move so i had to call a family member to come and get me . I know it is complicated and different things work for different people. Have you tried physical therapy for help with gait? Do you live near a place where there are therapist who are experience with parkinson's patients? Don't hesitate to contact me if i can help further somehow.

[Pete-1]

I thought PAGF was just an alternative name for PSP. To complicate matters I seem to remember there are 3 types of PSP.

To distinguish idiopathic PD from PSP a doctor may ask you to cast your gaze upwards, keeping your head still. If eye movement upwards is restricted then this points to a possible diagnosis of PSP

[steph02]

yes I too have this problem first diagnosed with atypical parkinsons in 2008 they have recently since changed it to atypical psp none of the drugs seem to help but i must admit that amantadine did not have any side effects but did not help with my condition. I have not officially been diagnosed with this but a bit of research seems to have confirmed this. I get stuck quite often now specially in busy places like airports. I find that stepping over a walking stick seems to defreeze me. stairs always defreeze me and have never been a problem. I ride a bicycle now since they have taken away my licence to drive ( which i am appealing against) I think that the deterioration in my condition have been very slow and hope it goes on this way. the other thing is my speech in which i find it hard sometimes to get out what i want to say but I seem to be able to read out loud ok. sorry hear about you but you are not alone .

[steph02 in reply to steph02]

ncbi.nlm.nih.gov/pubmed/177... gives a bit of an incite

or more about fog try google.co.uk/url?sa=t&rct=j...

[HanneloreC]

I came across this while I was researching after my husband got diagnosed with PD. His Parkinson's nurse had not heard of it but I can see that it could help a lot bot in improving posture and the metronome aspect to stop the freezing.

2mel.nl/parkinson-buddy-rea...

[Ken_Butler in reply to HanneloreC]

Thanks for the info. I have contacted the company to find out if there is a supplier in the UK