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So it is a complex illness that manifests itself in many different ways. So when people first meet my mom, one of her main conditions is problems with the eyes, so she has to wear wraparound over sunglasses constantly. So many people think she is blind when they first meet her and start interacting with her in a sort of strange way because they are not fully aware of what is going on.

The eyes have got worse regarding the light. I am very light sensitive. They are very sore at times. The arm has got worse. This arm is involuntary. They call it alien arm at the specialist, and I cannot write, that was the first thing I noticed. I could not write with the right hand. I am right handed, you see. And then I could not hold a knife and fork, so all this showed me that it was more than vertigo. It is very poor today. It is worse some days than others. Difficult when dressing, I cannot dress myself now. It just affects me in the movement. It won't stay still. In the wheelchair, I have a strap to keep it down. Help from lashing out at people. I tell everyone straight away that I have got this alien arm and it might flail about. So no one has commented on it ever.

So one of the problems my mum's got is an a... They call it an alien arm, and what that actually manifests itself into is she has got very little control over her right arm, which was her dominant arm when she was fully abled. And it is a lot of involuntary movements, a lot of pain and restlessness with it, and it can lead itself to just jerking around, hitting out, waving. So in the home, we can deal with that quite easily. You cannot strap it down, because if you try and control it, then that is very painful, so my mom says the arm does not like it. So she even talks about the arm as if it is no longer her arm, that is how it presents itself. But in the house, we've learned to sort of clear that area. So everything mom needs is on the left-hand side of her, and therefore we have stopped her knocking pots of teas over, we have stopped hitting people, we have got her in a place where she can wave that arm around as much as she wants now and it does not affect anybody. The minute we take her out of the house though, we have got to be really aware of that. And people just do not understand that, and that kinda freaks a lot of people out. So in hospital, we had quite a bit of a job to try and get her comfortable where it was not restricted, but it was not knocking into equipment.

And we had to do a lot of explaining to people that were visiting her from the medical profession, because one of them at least would be getting grabbed and would not be getting let go of. So whilst it is quite comical, it can be quite a surprise to people and they just do not understand what they can do to it. So if it would be in a position where that had happened, and mom would not be able to explain that very well, I think they would try and... Well, tether it is probably a stronger word, but try and maybe clamp it down in her bedclothes or whatever, and that would make her significantly uncomfortable and would put her under duress and things like that. So it is a very rare condition, can be very difficult to deal with and explain to people.