I'm sure that some of you either have this condition or know somebody that does. My wife unfortunatly does suffer from what she refers to as 'Her little friend' and I must say that is fantastic in dealing with it.
However she does suffer in humidity and severe heat, i would love to hear from anybody that has m.s. and their experiences on their travels.
p.s. if you do have m.s. I have a message KEEP POSITIVE! and don't let it take your spirit
Makes you think how some people are much better at coping with things when we complain about a bit of a headache..
I rest a lot every alternate day I find that helpfull. also I use an electric wheelchair ,this gives my wife an easier time . and I have more choice as to when and where I wish to go out .
On bad days the abled bodied who are deaf and blind when a wheelchair needs space receive the politically correct me ,ie loudly asked then told to move or there ankles may be in my way of my footrests, on the whole though heat helps one feel better. I rest a lot every alternate day I find that helpful and use an electric wheelchair ,this gives my wife an easier time .cheers maxie.
I believe Stephen Hawkins has motor neuron disease
If you are stood looking in a shop window and someone wants to get passed, you don't think too much about it as they can step around you or go on the road. A wheel chair user (or someone who needs a frame or a stick) would struggle or find it impossible to do that, but often that doesn't occur to them as they have no real idea about it. They aren't always being awkward or numb its just something you have to at least partly understand to be able to act accordingly... and each person copes differently so its not always obvious..
They're all in their mid 50s, two men, two women.
During the heatwave we had the year before last all but one of them enjoyed the heat of the summer, the man who didn't enjoy it rarely feels the cold so the heat really didn't suit him.
They are each at different stages of progression, but all are wheelchair bound and have ceiling hoists.
One of the men I visit has severe symptoms, he is unable to move from the neck downwards and is beginning to find talking and coughing a struggle, he has the most wonderful wheelchair with a keypad which he operates using a button which he pushes with his forehead.
The keypad controls various things such as lighting, television etc.
He moves the wheelchair using a joystick which he pushes with his chin.
He hasn't been affected mentally by the condition unlike two of my other clients and is able to go into great detail as to why he likes us to do things a very specific way.
For example, when we've hoisted him into bed at night and made sure he is comfortable, he likes us to place a rolled up piece of foam surrounded by a sheepskin (he calls this his sausage!) underneath his knees so that his feet are flat on the bed.
This is a fairly recent thing, up until about 18 months ago we used to position him with his legs flat on the bed.
He was finding that this position was causing his feet to start adopting a downward pointing position which was in turn shortening his calf muscles.
By raising his legs this way he has found that the calf muscles have lengthened again and that his legs are straighter, other than when he is having a muscle spasm.
This client says he feels far more comfortable in a hot room than in a cooler one.
He is without a doubt one of my favourite clients, he has the most fantastic sense of humour despite his severe disability, I know I wouldn't be able to cope if I was in his situation.
I've just been to the client I was telling you about.
As we were putting him to bed we were discussing the condition as we often do, it helps us to cater for his needs more fully if we understand the condition.
He has a website dedicated to his MS, I'll post the link in case your wife might like to have a look, he has some interesting if controversial ideas!
I've asked his permission and he's more than happy for me to spread the word
He has a little pipe which he blows into, it highlights all the options on the screen.
He knows I have an interest in I.T so very kindly took the time to show me how he uses his pc one night before I put him to bed, he was exhausted but showed me in detail how it all works, very clever stuff!
I will pass on your Thanks when I see Matthew tomorrow evening
He's asked me to ask you to email him if you have any comments regarding his theory, or about anything related to M.S, his email address is on the website
One thing, I got it totally wrong about him preferring the heat
Although he likes to be in a nice warm room and well tucked in at night, he actually dislikes it when the weather is too hot, he says it makes everything much more of an effort, obviously it's all an effort at the best of times for him.
Sorry about that!
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