Blog Summer Break

The blog is on a summer break for July and August.   We hope to be back in September weather permitting. 

These are the hottest months of the year and therefore the most challenging for people with MS including myself.

July 2015

'THANK YOU', MS SOCIETY

In awarding me a grant, the MS Society has given me far more than pounds shillings and pence. I have been given a sense of support, a feeling that someone out there cares and some memories of time spent with my children that are truly priceless.

This is a heartfelt thank you to the MS Society. It is also the story of my award, and how it unfolded over an extended period of time.

In 2014 I applied for a short break grant, so that I could go on a short holiday with my kids. In the spring I received a phone call to say that my application had been successful. That phone call was probably the best and most uplifting news that I received all year.  I felt so happy and excited about the forthcoming trip. Since leaving my home to live in care on meagre disability benefits, I had never dreamt that I would have the means to go on holiday with them ever again. The MS Society proved me wrong.

Sadly, due to my failing health, it became apparent over the next 12 months, that I would be unable to attempt such a trip. Unfortunately, the holiday became a mountain too  large and daunting for me to climb. Reluctantly, I had to let it go. You can imagine the disappointment.

However, thanks to the MS Society all was not lost. Always helpful and flexible, the Society agreed to offer me my original award in order to support 3 smaller projects instead.  The first of these, was a series of days out with my beloved children during their Easter school holidays.  These were a huge success, more within my capabilities than a trip away and just as much fun. Days out varied from a simple shopping trip with lunchtime pizza, to a more ambitious Owl Flying Experience at a birds of prey centre or indoor skydiving followed by tacos for lunch. In a restaurant one day my 13 year old son turned to me and said, "You know, mum, we don't get to go out for lunch very often. But when we do, it's like Christmas!"  I felt just the same.

I have now received the second and third instalments of my grant.  However, I still have the projects themselves to look forward to.

The first is a garden project. Due to my MS, I am unable to tolerate direct sunlight for more than a few minutes. Creating a shady patio, will give me somewhere to sit in my wheelchair where I can be comfortable and cool, whilst still enjoying the outdoors.  The work is scheduled for the autumn, and will complete in the new year.

The final instalment of my award has created a travel fund, giving me the independence to get a wheelchair taxi where I want and when I want. I am already enjoying having much greater freedom.

Although losing my original short break was a great disappointment, with hindsight I can safely say that things have worked out better in the end. Thanks to the MS Society, the projects above will have improved the quality of life for myself and my children more than a single holiday could.  Furthermore, I have been able to extend the warm feeling of support from the Society over an extended period, since the grant was originally awarded in 2014.

The feeling that someone out there cares has meant more to me emotionally, than I can say. As I happen to have a very aggressive form of MS and sometimes feel that I am fighting a losing battle, this chink of light from the MS Society, has lit up some very dark times indeed.

Thank you from the bottom of my heart.

June  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

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

Happy Anniversary!

2015 will be a big year for a anniversaries. 

The wonderful annual art exhibition is almost upon us, and this year it celebrates its glorious 10 year anniversary.  From humble beginnings it has grown and developed from year to year and has now blossomed into the wonderful celebration of creativity that it is. 

As well as much needed funds it generates an enormous amount of goodwill towards the Centre. Each year I look forward to attending with family and friends, glowing with pride. 

I realised, with somewhat of a shock, that 2015 also marks my 10th anniversary of membership of the Centre. It would be hard to be put into words just what the Centre has meant to me over that period of my membership. But I am going to try. To summarise the Centre is somewhere I feel both warmly welcomed and accepted for who I am, that is, Henny who has MS.  

Here, it's okay to be me. 

2015 also sees the Centre's 30 year anniversary, truly a cause for celebration and a good reason to bring out the bunting.  What on earth did local people with MS do before that?  It hardly bears thinking about.  You will have noticed the special 30th anniversary logo that is about.  Look out for other opportunities to celebrate later on this year. 

So I may not be any wiser but I am certainly another year older. I suppose I will have to settle for that. 

  

February 2015

SING FOR THE CENTRE

As the outside temperature drops, I have been keeping myself warm with a fantasy. The fantasy goes like this.

Every time I come to the Centre I am struck by how it is full of such lovely people. In the daydream all these lovely people come together in a choir and raise the roof with song.

Singing is about the happiest activity I know. It is impossible to feel sad whilst you are singing.  So a Centre choir would not only be tremendous fun and very rewarding for all participants, but it could also be a fundraiser for the Centre. It transpires that our own Robert Breakwell is not only a phenomenal musician, but an experienced and prize-winning choirmaster as well. We are therefore fortunate to have the perfect person in our midst to lead us.

Remember that to sing in a choir you do not need to be a particularly good singer. The beauty of singing in a group is that no one voice stands out. All you do need is bags of enthusiasm. 

If you would be interested in joining a choir at the Centre, then simply drop Robert a quick email (robertbreakwell@chilternsmscentre.org) so that he can gauge the level of interest. 

Robert has indicated to me that he would probably start choir rehearsals after Christmas.  What a way to kick start 2015 - by joining our voices together in celebrating our wonderful Centre. 

November 2014

 Henrietta Whitsun-Jones

HENNY CALLING

The Centre has given me my speaking voice back  Quite literally.

I had noticed that my breathing was becoming very shallow. Consequently my voice production was affected and I was speaking quieter and quieter  "Pardon?" was becoming a horribly familiar phrase to me.

I became quite disheartened and depressed at the quite probable prospect of eventually losing my voice altogether and losing the ability to communicate completely. Communication has always been at the heart of my personality, whether working as an actor or in public relations or just in life in general. The prospect of being completely mute and unable to converse with my friends and family was a rather frightening vision of the future.

Then I found out that the Centre had been loaned a new machine called a 'Cough Assist' designed to help with breathing. It sounded like just what I needed so I decided to give it a go. After all, I had nothing to lose.

The machine works by pushing air into your lungs thereby making them inflate.  A face mask is connected to a small tabletop machine by a hose; the intensity of the air coming in and the timings between each breath are all carefully controlled by the operator. The machine also encourages expectoration through coughing thereby helping a person to clear the lungs of any catarrh build-up.

I used the machine once a week; during my treatment session. After only two uses I felt I was seeing some real improvement. What's more,  I found that the benefit was lasting well into the week. But what really pleased me was the the fact that I felt able to do some basic singing exercises once again. I used to do a lot of singing, but MS had effectively put a stop to all that. There is no way that I had enough breath for that. Consequently that these exercises seemed to help me to attempt a little singing again (albeit very croaky at first) was truly magical. It is impossible to feel sad when singing. It is therefore the most uplifting and joyful activity I can think of. To be able to do that again meant a lot to me.

The next step is for the Centre to look into the possibility of loaning me a machine so that I could use it more often. Should that prove beneficial then we may look for any available funding.  I would certainly be interested in owning a machine of my own.

So it seems that singing and speaking are inextricably linked. Doing some simple singing exercises seems to help me to speak better: this is where the Cough Assist machine seems to really help -  to get more air into my lungs.

It is still early days but to say that I am encouraged is a massive understatement. Once again the Centre has come to my rescue. The debt of gratitude that I owe the Centre by now must be bigger than the national deficit.

The gift of helping me to retain my speaking voice is an utterly priceless one

October 2014