Good morning
Just come back from a great holiday and back to the daily grind.
Cheered up a lot by coming back here and great to see what's going on and seeing I'm not alone.
In particular I seem to be getting some damage to my right hand to add to the damage I have to my left and dominant side. I now have fasciculations in all four limbs and occasionally it seems in my left shoulder up to my left cheek.
I still have some strength in my left hand but my fingers are like a bunch of bananas so I can lift and push but not grip. My right hand is now seemingly going the same way although I still have a pinch grip on the right.
I have been talking to my local REMAP lot (https://www.remap.org.uk) about trying to get some sort of glove or other aid that I can put on my left hand to help me use it but the bloke I see has just become the father of twins and has disappeared so blew out our appointment yesterday - and it looks like I may need something for my right hand as well.
I use a palm strap for using cutlery but this does not help, when, for example, I want to use a pair of pliers.
My REMAP bloke was working on a glove which kind of stuck my fingers together but the prototype was not quite right and so there was I hope he was coming yesterday with a solution and……
Does anyone have any solutions for assisting hand function?
The other thing we been thinking about is housing.
We downsized about five years ago, a year before I was diagnosed, and would not have purchased this house if we knew then what we know now - especially if I end up needing a wheelchair.
The house we own is on three floors and even if we could widen the doors the landings are not deep enough for a wheelchair turning circle and the way the house is set out is not sensible for putting in a lift. And we would need to do this as the toilet is on the first floor and there is no sensible place for the toilet on the ground floor other than a free standing chemical one of course.
It seems where we are in South London where we have all our friends and contacts that houses converted for people with disabilities are like hens teeth i.e. rare and the more modern disabled converted or built properties are in the housing association sector.
However it's not easy to move from the private sector to the housing association sector it seems and may not even be considered at all until I'm clearly not suited to living in the current place which of course is not a place where this long-term planning person here fancies being in.
I suppose we could move somewhere else where housing is cheaper and use the money we make, if needed, to convert a place for wheelchair purposes but thought of giving up our local support structures plus the time this would take seems daunting.
Has anyone else faced this issue and found the solution to it?
Best to all
Andy
Just come back from a great holiday and back to the daily grind.
Cheered up a lot by coming back here and great to see what's going on and seeing I'm not alone.
In particular I seem to be getting some damage to my right hand to add to the damage I have to my left and dominant side. I now have fasciculations in all four limbs and occasionally it seems in my left shoulder up to my left cheek.
I still have some strength in my left hand but my fingers are like a bunch of bananas so I can lift and push but not grip. My right hand is now seemingly going the same way although I still have a pinch grip on the right.
I have been talking to my local REMAP lot (https://www.remap.org.uk) about trying to get some sort of glove or other aid that I can put on my left hand to help me use it but the bloke I see has just become the father of twins and has disappeared so blew out our appointment yesterday - and it looks like I may need something for my right hand as well.
I use a palm strap for using cutlery but this does not help, when, for example, I want to use a pair of pliers.
My REMAP bloke was working on a glove which kind of stuck my fingers together but the prototype was not quite right and so there was I hope he was coming yesterday with a solution and……
Does anyone have any solutions for assisting hand function?
The other thing we been thinking about is housing.
We downsized about five years ago, a year before I was diagnosed, and would not have purchased this house if we knew then what we know now - especially if I end up needing a wheelchair.
The house we own is on three floors and even if we could widen the doors the landings are not deep enough for a wheelchair turning circle and the way the house is set out is not sensible for putting in a lift. And we would need to do this as the toilet is on the first floor and there is no sensible place for the toilet on the ground floor other than a free standing chemical one of course.
It seems where we are in South London where we have all our friends and contacts that houses converted for people with disabilities are like hens teeth i.e. rare and the more modern disabled converted or built properties are in the housing association sector.
However it's not easy to move from the private sector to the housing association sector it seems and may not even be considered at all until I'm clearly not suited to living in the current place which of course is not a place where this long-term planning person here fancies being in.
I suppose we could move somewhere else where housing is cheaper and use the money we make, if needed, to convert a place for wheelchair purposes but thought of giving up our local support structures plus the time this would take seems daunting.
Has anyone else faced this issue and found the solution to it?
Best to all
Andy
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