Diana and I are veterans of the British Moebius Society Conference, which we always enjoy, and so when we were asked to attend the German Support Group’s annual conference we were delighted. The conference itself was well organised and well attended with 48 families being there. It was nice to see a wide range of people from a 7 month little baby, who slept through our emg testing, to adults attending with their ‘normal’ children. And of course a welcome opportunity to catch up with two of our patients.

Diana had decided to try out her first PowerPoint presentation in Germany and was relying heavily on pictures to supplement the talk and fill the translation gaps. Literally 2 minutes before the presentation we weren’t able to plug our laptop in as our adaptor plug was the wrong one! However, an ingenious gentleman came to our rescue with a TV cable and we were up and running.

The lecture went well and our translator did a fantastic job. We began with a list of Diana’s qualifications which concluded with her showing the plaque she was presented with by Linda Anderson at your last conference for her services to Moebius Syndrome. For those of you who have seen Diana lecture before please excuse me if I recap a little on who we are and what we do.

Diana is a physiotherapist specialising in Facial Rehabilitation and I am a psychologist working with facial retraining using biofeedback techniques. So what does that mean…..

Firstly we assess the facial function through a series of manual tests and photographs. Then we assess the level of nerve activity using an electromyography (emg). This is a pain free electrical test which allows us to in effect listen in to the nerve as it talks to the muscle and see how many and what quality of signals the nerve is sending.

Then we tap in to this with Trophic electrical stimulation. It is a low frequency treatment which mimics the firing pattern normally received by healthy facial muscle. The action is two fold; firstly it increases the muscle bulk and tone to create the more mature red muscle that is needed for facial function and largely missing in people with Moebius syndrome. Secondly it pushes the nerve by sending these extra signals along encouraging a branching to the nerve so that it can and does send more impulses. These changes are sustained by function, so as the new muscle comes in we add in facial exercises and biofeedback to teach the person how to use their face and so make the most out of any new muscles.

The majority of patients with Moebius Syndrome have bilateral palsy and in these patients they have no normal feeling of face as a reference point. So the biofeedback training is really useful. Basically we use the emg, a computer and bar – graph display to show how the face is working. Very quickly the children can relate to the machine and understand that if they elicit a movement in the cheek area, for example, they will be rewarded with big increases in the on screen graphs. This is using another channel i.e. the eyes, therefore, to tell them when they are moving their face in the desired way and give them a sense of what it feels like.

When we were in Germany we assessed 39 people, mainly children, in one day. We were exhausted – the most we see at The Lindens in one day is 8!

We were able to do brief emgs on the cheek muscle and then switch the display to bar-graphs for a quick try. All the children, no matter how low there initial readings, were able to increase these reading when they had visual feedback; in some cases by large amounts.

We were also using the biofeedback to get less neck involvement in maximal activities, something that gets easier as there is more red muscle available and the movement become freer.

It was a very hot day and we were in a really warm room, these children were amazed by the graphs and so the language barrier disappeared. They were walking away from the testing with bright red cheeks from exerting themselves to try and get the best readings of the day. They were also very proud of themselves because they could do it.

These readings give us some idea of the potential available and so with some stimulation to build up the right type of muscle the possibilities for change are there.

Interestingly on the day we were able to assess 4 single sided Moebius patients. Of the patients we are treating at the moment two are single sided but are too young for biofeedback (an age of 5 is desired, they have to be able to sit and concentrate on the screen even if it is only for a few minutes at a time, although the stimulation can be started at any age). The children we saw in Germany were very quick learners on the biofeedback side because they had one ‘normal’ side of the face as a frame of reference. For them the issue is training the good side to do less and give the palsied side a chance so that we get a smaller but balance smile.

We had a wonderful time in Germany and can now count to 10 and say smile in German!

We look forward to seeing you all at the next conference (if we are invited) and will try similar workshops there. If we can achieve such fantastic results across a language barrier then imagine what we can do with your children.

Written By
Jenny Farragher MSc BSc (Hons)
Clinic Manager for
Diana Farragher OBE FCSP MSc Dip Phys Grad Dip TP

The Lindens Clinic ,214 Washway Road, Sale, M33 4RA
0161 718 8620