Tuesday, 29 November 2011

Moving those electrodes downwards....

Today I had an appointment with my speech therapist. The day got off to a slightly rushed start when I woke up and realised it was half past eight and I had to leave for hospital just after nine! I hadn't set the alarm because neither Neil nor I was going to the gym, and I was so soundly asleep that Neil let me slumber on when he got up for work - I should have reminded him last night about my appointment and asked him to waken me up, or just set the alarm myself!

Anyway, I got there in time, washed, dressed, face taped up etc. The session with Vanessa (speech therapist) was very positive and constructive. She says my eyebrow is now in the correct position, after starting off with it sitting very low on my eyelid - this is due to some natural nerve regeneration but mostly due to using the electrodes every day for the last 6 months - or, if I am totally honest, almost every day. There have been a few occasions when I have forgotten and a few when I have thought " What's the point of doing this?" but generally I have been pretty good. In recent weeks, I have also used it near my eye, to stimulate the nerves there. Vanessa told me I don't need to use it there as that has recovered well and my eye now closes very well - this is particularly good news, as it means that it gives me a slight chance that the consultant will decide to re-open my eye at some point. I know it's only a chance, but at least I don't have to write it off quite yet. Instead, I have to use the electrodes next to my mouth and nose, to try and generate some movement there - when I smile, there's a slight lift out at the side of my mouth but it doesn't lift up by my nose, like your faces do on both sides when you smile - it makes my smile very lop-sided. Using the electrodes may make a slight difference, but clearly won't bring back my old grin. I also have a very precise facial exercise to do each day which needs to be done exactly as I was practising it during my session, otherwise I will have a lot of work to undo the damage I might cause to how my facial muscles work - eek!

We also talked about the Facial Palsy charity which has just been set up - a national charity to support people who, for whatever reason, have facial assymetry. I think I mentioned going to a meeting of this group in my blog at the time. Anyway, the long and short of it is that I am getting more involved with this and helping with the charity's blog and newsletter. It's a group that should be run by the members, not the NHS professionals who are helping establish this group on top of their own workload. I am quite excited about it, because it could have a big impact on people like me - in a positive way.

I left hospital feeling that it had gone well. I am going back to the gym tomorrow and really do feel that the return to exercise is helping me deal with things a lot better. I also talked with Vanessa about how I could protect my face when I return to running - the impact of landing on the ground risks lengthening the muscles in my face, which would make future surgery less effective. She has advised me to tape my cheek up and that should give me the protection I need - I feel really pleased that I might be able to run again (depending on stamina and how my legs perform!!).

I returned home with not very much time to produce lunch for today's guests - my minister, David, and the local RC priest, who used to live opposite us. Dinner was in the oven when they rang the doorbell, even if I hadn't managed to tidy up all the debris from the preparation! They didn't seem to mind, though.....

So, a good day (so far!). When I look in the mirror and look at my smile, I need to remember the difference between how I looked in June, when I first saw the speech therapist, and how I look now. To most people, I don't really have a proper smile - or at least, it doesn't look like how other people smile - but today, looking at the photos of me in June and the photos of me now, I can really see the difference. Marginal? Well, yes, but in this game, the key is marginal, slow improvements achieved through exercise and stimulation and then surgery will bring about (hopefully) bigger improvements and restore a bit more animation. That won't be for another 18 months at least, though, so a long old wait.

I really want this positive feeling I have had over the past week or so to continue. I need to remember how I feel now when I next feel a bit down about it all. If only we could bottle feelings and then unpop the cork when we need to feel that way - wouldn't that be great?

1 comment:

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