Living with Progressive Supranuclear Palsy - Irene

So it is a complex illness that manifests itself in many different ways. So when people first meet my mum, 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 lights, 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, 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. And in the wheelchair, I have a strap to keep it down, help from lashing out to people. Yeah, I tell everyone straight away that I have got this alien arm and not flare about. Yeah. So no one has commented on it ever.

So one of the problems my mum has got is that 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 mum says, "The arm doesn't like it". So she even talks about the arm as if it is no longer her arm; that is how it kind of presents itself. But in the house, we have learned to sort of clear that area. So everything mum 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 got to be really aware of that. And people just do not understand that, and that kind of 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 wasn't restricted, but it wasn't 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 while 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 mum 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 even very rare bits of a of a very rare condition can be very difficult to deal with and explain to people.

It upsets me really when I think, "How I have gone from normal to this in such a short time?" Once you have it, there's no getting away from it. You seem to have it, and that is it, no cure. So you have to take each day as it comes, regarding walking and such, which I cannot do now. But I think it is cruel, the way curls one up. Yeah.

The difficulties I find caring for my mother and supporting my dad, who is the main carer for my mum, and numerous. She has got cross-over of PSP and CBD, and it is constantly, us both thinking about the things that we can do to try and make her life a bit easier, or have some enjoyment in the day or be stimulating to kind of her needs. But the list of ailments or conditions, I would say that she has because she has got both symptoms of both of the conditions are quite extensive. So it is constant battling really to think about the things that we need to do to make sure she is comfortable, to make sure she is able to enjoy the time with the family and that is generally the things like people visiting the house.

So when we try and then think about, is it a good day that my mum has got where we may be able to take her out? That just then gets multiplied into the logistics of trying to move somebody who has got quite a lot of disabilities.

Going to my sons, we have a lot of laughter and enjoyment. And when I can, I like to go shopping, the weather permitting. And I just like to laugh and enjoy life as much as I can and I can enjoy it. It was a relief when I was diagnosed because the diagnosis had taken so long to get. I would have liked people to say to me, "Don't worry, you can still have a life and laugh at things." Because to laugh at the arm most days. Life is good; it is really.