For anyone who is having real problems with their downward gaze, (like my Tony) I can highly recommend the prism glasses which were mentioned in the last publication of PSP Matters. Tony is now able to see to feed himself and even reads a little since we acquired these "odd" looking glasses. However, "odd" or not, they certainly have helped Tony. Really wierd how they work. When you put them on and look straight ahead, you can see your navel!! LOL Not a pretty sight, but it helps to prove how effective they are.
I telephoned the PSPA last Thursday and they arrived free of charge, on Saturday. It's worth the phone call just to try them, but if they aren't suitable or you no longer require them all you need to do is return them so someone else might benefit.
Just wanted to share this bit of information with everyone just in case you missed the item in the magazine.
We're having a bit of a tough time at the moment, but we're getting help from various agencies, etc. so we're "SORT OF" managing!!! Too many issues to get off my chest at the moment, and Tony is due back from Day Centre in a couple of hours, so I'm going to have myself a little nap to re-charge my very worn out 'batteries'.
Love to everyone and take care.
God Bless.......................SuzieQ xxxx
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SuzieQ
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Hi SuzieQ, thank you for this encouraging blog about the prism glasses...it's always helpful to know when they are helping. If anyone is interested, please either email me on debbie.benadie@pspeur.org or telephone 01327 322410. Many thanks
My Dad took to them immediately. It was amazing watching him pick up the tiniest piece of food!! He loved them so much I got him another pair for wearing in bed to watch tv as moving is too hard. Again, worked beautifully.
Glad to hear your news and good that Tony is finding the glasses useful, But how and where are you getting all the help and care from??!! Most "agencies" I have had dealings with just tell what a good job I am doing and that the NHS is running out of money.
Having said that, is Tony co-operating with the the care - my husband refuses all help and tells me its my job.
Really pleased to hear that Tony is finding some benefit from the prism glasses. It was definitely worth a try and as they say, nothing ventured, nothing gained. Maybe someone else reading this will give it a try too. Hang in there and just remember to look after yourself too. You are special to lts of people.
Thank you SuzieQ. My husband too is now having great difficulty looking down, so I think we will give them a go. From your blogs I think our husbands maybe at a similar stage with this awful disease.
Does Tony enjoy going to the day centre? My husband won't even contemplate doing anything like that. I feel I am getting to the point of needing some help with his care, but he refuses at the moment to have anyone else involved.
We are about to go on holiday with our daughter to Malaysia, whilst part of me is looking forward to it, a big part of me is not. I think we have made most of the essential arrangements for assistance. Has anyone got any good advice of what to look out for when overseas with PSP?
I received Mum's prism glasses yesterday and am going to try them out with her today. They are fixed-after all if they were moveable I think there would be lots of issues getting them correctly aligned.Fingers crossed and I will let you know how it goes.
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