Unfortunately, speech is an area that suffers for many people with MS. As I happen to have the most aggressive kind of the disease, lately the struggle has become more intense as my speech fades.
However, help exists! The marvellous physios at the Chilterns MS Centre have come to the rescue once again. Thanks to them I am currently 3 weeks into a 6 week trial of the marvellous Cough Assist machine which has been working wonders. (See earlier blog post HENNY CALLING). I have been using the machine three times a day.
The feedback from carers, nurses, Physios, friends, family: everyone who comes into contact with me, has been overwhelmingly positive. They all comment that my speech is much louder and clearer than before. My self confidence is riding high. Furthermore this experience has really taught me just how vital verbal communication skills can be.
When I have a voice relationships with other people are much easier. I can tell jokes, so exchanges become infused with laughter. I can express my sense of humour.
When I have a voice I can explain to carers or whoever, exactly what I need or want: there is no telepathy required.
When I have a voice I can use humour and tact to assert myself: I can protect my rights with diplomacy. I can express views, political opinions and thoughts.
When I have a voice I can express myself using voice recognition (now quite sophisticated). I can no longer type with my fingers so I can write this blog, or emails. Or make phone calls. Yes, I can even Tweet!
Suddenly I am social and connected: I can participate and get involved. (I even managed to help deliver a media training session recently at the Centre - addressing a group and talking through a presentation. Fancy that!)
When I have a voice I notice that my personality is different. I am much more outgoing, and less likely to feel 'locked in' or isolated. I can take the initiative and be active, not passive.
So why does this magic machine work? (Here is my very non-scientific explanation, based on my personal experience). As a former actor who sang a lot, I am aware that voice production relies on getting a good air flow over the voice box: the breath is vital. Unfortunately MS has compromised my lung function: the Cough Assist machine seems to help counteract this. I can get more air into my lungs and so my speech has more power.
I have been enjoying this part of the trial so much, and having my speech back. The next step is to do without the Cough Assist machine entirely for a fortnight, in order to measure the extent to which I can maintain the benefits. So watch this space ..
But whatever the trial result, I can feed back with certainty that the Cough Assist machine really seems to improve speech for me. Here's hoping that this is a story that I can continue to tell ...
(For more information about the nippy Clearway Cough Assist consult your physiotherapist or visit www.nippyventilator.com)