As the disease has affected me or as for how it has affected me it, as I said it basically started off with muscle wastage on one shoulder and then it moved to the other shoulder. And has moved to my hands after that really. I can still throw my arms around and I can use my hands but not very well. And if I get cold then my arms and my hands in particular become almost useless. I can still throw my arms around so I can. If I want to reach a door handle I can, I throw my arm at the door handle, grab it hopefully and then turn it although the turning part is necessarily quite weak because my strength is quite weak because I have no muscle or little muscle.
So the main thing about my condition as it is now is to remember to stay warm and not to fall over. Because again with no use of my arms if I trip and fall which is quite a common thing for MND patients to do I've got no way of breaking my fall. And it doesn't matter if it's on grass that's ok but if it's on concrete and there's an awful lot of concrete around the world nowadays I've got to be very, I've just got to be careful not to do so.
And when my partner and I go out walking we tend to hold, well link arms. But we're both aware that if I start falling then the best thing she can do for me is to let go because if we both go down in a heap and she gets hurt then I've done neither of us a favour by, I mean I might get hurt as well but that's. If there isn't anybody to look after me then that's, we've doubled the problem if you like.
Do you have any aids to help you with walking?
No. The only thing that might help me is, would be to get an electric scooter or something like that at some point in the future. But as for aids in walking that would involve carrying something around and moving it. And if it was a stick then I couldn't use, I couldn't move it. I couldn't lean on it and move it or lean on it and pivot. I mean, as I said I've got no strength in my arms so anything like that it wouldn't work. If I went for a trolley or something like, you can get stands which have wheels on and you can push them along but I think it's the same. It gives me, I've still got the same problem that I'd have to have to have the strength in my arms to move whatever device that was trying to help me.
And how long ago did your arms start becoming weak?
Well I suppose it was, I noticed, I started noticing it more after the diagnosis which was, as I said getting on for 8 years ago and it's just gradually progressed. I was going to say the fun of the disease if that's, it sounds, it probably doesn't sound, make much sense. But it's quite interesting trying to work out different ways of doing things, different ways of getting into a bath or having a shower or moving the showerhead. I mean, I do a lot of, well not a lot, I do a number of things with my head. So if I want to get in the shower and I don't want to get cold then I move the showerhead with my head one way and get the water the right temperature then get under it. Have the shower and then move the showerhead back again and then turn the shower off. And I mean that's one I've only really started practising in the last few weeks. It was, well it was fairly obvious that something to try. I didn't see it at the first.
You use your head for all of that for switching it off as well?
No not for switching it off. No I can throw my arms at the tap. |
