Wednesday 27 May 2015

IT'S GOOD TO TALK

For me, life has always been about communication with other people. Usually verbal. It has always been 'my thing'. Whether I was an actor, or a communications' consultant, or just me. 

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)

May 2015


Thursday 14 May 2015

FULL HOUSE!

Sometimes everything just clicks, and falls into place.  Like now.

Almost like the air shimmering when a ghost has just walked by. Something has changed.  What?  A barely audible 'thunk', while the clock hands reach twelve or a key turns in a lock. Or perhaps you feel the earth rumble briefly under your feet: one tiny degree in the earth's orbit.  Or was it just a 'tube' train on the London  Underground going past?

What has happened?  I have been through a long winter of waiting, waiting, waiting.   (Patience is not something that comes easily to me). So it has been icy cold and hard, hard, hard.

But now that there is blossom outside my window again, everything has started to bloom all at once: several different projects have come together simultaneously.

I have decided to blog about these separately. So, if you are interested to find out more, then read on...

This week's project has been in the diary for a long time: Media Training with a group of the Leadership Team at the Centre: Occupational Therapy and Business Development were represented, along with our CEO, Robert Breakwell. (Session 2 will train a different group in 2 weeks' time). The aim of the training was to help make the team more effective in representing the Centre to the media and the press (something they are increasingly getting an opportunity to do these days).

This is mainly thanks to the tremendous job that is being done by my co-trainer, Catherine Golds.
Catherine is a Centre Trustee, volunteer PR manager, general good-egg and fellow customer of M&S (my beloved sister - yes you guessed it, she also has the condition – and I, have jokily referred to MS as Marks and Spencer's, for years).

The session went extremely well, as feedback confirmed. I really enjoyed working with Catherine: I think we made a good duo. And as you would expect, the Leadership Team came across fabulously well: passionate, professional, warm and real.  A precious and rare concoction that the media will feast on.

Me, I was a little apprehensive beforehand. After all, it is about 8 years since I last media trained anyone. (For me, M&S has changed and developed a great deal in that time). In my darker moments, I feel a bit 'broken': a busted-up thing, forgotten and gathering dust in a corner somewhere.

But I needn't have worried because I was amongst friends. People who can see through the M&S to the person underneath; allowing them to do their best and still make a contribution. I felt useful. And it made me feel really happy.  Happy to be able to be of service to the Centre that over the years has given me so much.

That day, my huge debt of gratitude became just a tiny bit smaller.  Thank you yet again, Centre, for giving me that opportunity.
  

May 2015