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

Blog Summer Break

We are now officially in Summer from June 1st. Consequently the blog is on a summer break for June 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.

  Henrietta Whitsun-Jones

The internet: help or hindrance to my MS?

I  remember 18 years ago the Internet was in its infancy.   I remember talking about it to my then boyfriend who was an early adopter and already tinkering with it.  I thought it was quite nasty and annoying and would not catch on.

To say that I was wrong would be quite an understatement!

18 years later and the world is unrecognizable. It has shrunk to a fraction of its former size, and people in Scotland can communicate with people in Dubai in nanoseconds.

The Internet has undoubtedly compensated for my MS limitations enormously. Thanks to Internet shopping I have been able to do my weekly grocery shop online for years and feed my growing family whilst being unable to get round a supermarket. Through my laptop I have had a window on the world and a connection to the rest of society that I would not otherwise have had. I have been prevented from becoming isolated.

I have purchased clothes, equipment, tickets, holidays ... you name it,  freely and easily. I have had access to information that otherwise I could only dream of. So the internet has undoubtedly been of incalculable benefit to people like myself with a disability.

If you sense a 'but' coming that's because there is one.  Because for each benefit there is also a corresponding drawback. Take communication for instance; for every budding love relationship forged over the Internet, there is a 'saddo' somewhere who cannot talk to real people face to face but can only communicate and make friendships from the relatively 'safe' distance of cyberspace.  This is an impersonal, electronic world that has no heart and no feelings and therefore does not care. It seems to reflect only the status quo and is therefore inherently conservative. Thus, in a man's world, pornography and images that denigrate women are everywhere. The very worst aspects of humanity are depicted online: images of people doing unspeakably awful things to others. The Internet will tell you how to go about murdering someone, how to build a terrorist bomb or where to find other people who enjoy looking at images of paedophilia. It is far less often a tool for good than an instrument for evil.  It is almost impossible to regulate and is anarchic by nature.

These things should not prevent us from using the Internet where it helps us, but it is as well to be aware of its pitfalls. We must remember that it is our slave and not the other way around. Nor should we make the mistake of imbuing it with a personality or a moral code for it is not human and has neither.

My advice is use it carefully and wisely and be realistic about its limitations.  I tell my kids the same thing!

That way you can enjoy the benefits whilst hopefully avoiding most of the pitfalls.  One thing is for sure though

  - you cannot avoid it!

Henrietta Whitsun-Jones

How does my garden grow?

 I dream of making a garden: the best fun I have had with my clothes on for ages. The nursing home where I live have granted me my own patch of garden that I am responsible for. I dream that the gardener here might be able to do the physical side of things on my behalf.  What a joy that would be!

Gardening is a tremendously life-affirming activity because it means dealing with living things i.e. plants   It probably signifies that I have been thinking about life and growth (of the personal kind).  Surely this must be a flowering of the tree of Mindfulness: a delicious rising of the sap of imagination?   An increase in activity here is definitely one of its

features that I have experienced   lately.

I have recently put considerable effort into making my little flat here just the way I want it.  I have tried to make a comfortable, appealing and homelike place where my children can come and be with me and where I feel that I can be myself. Now my creative energies need something else to focus on. And so they have turned towards the garden.

It has been the best fun to imagine what my little patch of garden could look like: how it could change from season to season, where plants should go depending on their mature height, colour and leaf form, checking that I have chosen contrasting and insect friendly varieties, and checking that the plant-types are reasonably drought tolerant in order to keep watering to a minimum.   Whatever comes to fruition, I'll try to upload some photos in the summertime.

I feel that this focus on gardening is both seasonal and representative of my Mindfulness journey. I have tried to continue my meditation practice twice a day where possible (I started the week before Christmas). I have experienced several highs and lows since then though I have found that Mindfulness has sustained me throughout.  So

far it has provided a rock to cling to in a storm, but somewhere to bask in the sunshine as well. With regard to the MS I know that I have large patches of dead brain. I have seen pictures of these on my last MRI scan. But the brain is a mysterious and magnificent piece of kit. It is capable of compensating for its own shortcomings.   I am hoping that Mindfulness is doing just that for me.  Of course it is not a cure for MS but I hope that Mindfulness is capable of helping my brain to work smarter despite the far reduced brain area available. I spoke about this to my very interested neurologist recently.

And the best part is I get to take it with me wherever I go because it's inside me at all times. It's just an eyelash blink away.  And it's completely free!

If you fancy giving Mindfulness a go workshops are available at the Centre. Just ask at reception.

April 2014

Spring has Sprung

Feels like it's finally here. That thing called Spring that we have waited for for so long.  And doesn't it feel good? Like anything, the having is all the sweeter for a long wait.

With the spring have come thoughts of the children that have sprung from me. Perhaps because they have been away on holiday during half term. I guess I think about them a lot. This is undoubtedly because I do not live with them but in a nursing home instead and unfortunately we are separated much of the time. This artificial distance gives me perhaps a perspective on them which I would not otherwise have.

The thing is I really like them. Of course I love them (more than life itself, actually) I mean that as well as love them I really LIKE them: the  people they are becoming

My daughter is a very pretty girl. And all the prettier because she does not act as if if she knows it. However she does not have outward looks alone She has an inner beauty that shines out of her. It is a beacon that I'm sure will attract many people during her lifetime.

She is also great company: a lovely person to be with. The kind of person that you just feel better after being with her.

Add to all this brains, humour, maturity, common sense and kindness and she really does have it all. Oh. and she has the singing voice of an angel too. She is still only 14 but already is one hell of a woman!

As for my son, what of him?  He is two years younger so has more growing and developing ahead of him than his sister. He also is a looker: a very handsome boy and becomingly modest, too.

I wonder that his little arms are not pulled out of their sockets with the sheer weight of his not inconsiderable gifts, which are as weighty as his sisters'.  He is fiendishly clever: capable across the board of being good at anything he puts his mind to. He is also wickedly funny: he can have me crying with laughter in seconds, thanks to his clowning around and ascerbic wit. Self-expression on paper seems to come very naturally to him also

But it is his sweetness and kindness to others that has the power truly to take my breath away. I have seen him tenderly lead an elderly man with dementia in the right direction. Or help a bewildered and ailing man upstairs with his bag, who has been unceremoniously dumped at the door of his home by an ambulance crew who should have known better. He does these things easily and naturally, almost without thinking.  Remarkable behaviour for a 12-year-old!

I can take very little of the credit for these outstanding young people. For I truly believe that in the main children emerge from the river of souls almost fully formed. As parents we do comparatively little to shape them. If I am a good parent it is because I am a good gardener. I have simply tried my best to provide good conditions for them to grow in:  good soil, enough water and plenty of light. They have done most of the growing and developing all by themselves

I seem to have had the good fortune to bring forth two top quality world citizens of tomorrow: for I am confident that the world will be a better place with my children in it. They will make their contributions sensibly, responsibly and intelligently. Exactly how they chose to do so will be revealed in due course.

And as they continue to grow up I will have the pleasure of witnessing it all unfolding.  So here's to their continuing journey and to the Spring that has just arrived!

With New Year in mind

So it's all over for another year.    My sister texted me the following day to say "thank f-- for that!  It's all over for another year". 

Whether you are sad or delighted depends on several things, such as what sort of relationship to and history you have with Christmas; this seems to relate mostly to what your childhood memories of it are like. Those people who had great childhood Christmases tend to carry this on into adulthood.  The reverse is also true. This then gets passed down to their children etc, etc and so the cycle continues

At this juncture (after Christmas and around New Year) I typically find myself doing two things: reviewing how the Christmas just gone went, and looking forward into the new year and sketchily planning out a few things I want to achieve during the first few months of the year.  So I look back and then look forward, at the same time. I am quite sure that I am not alone in doing this.


This Christmas just gone was the best one I have had in years.    This, despite it being almost a year exactly that I have been living away from home in a nursing home.  The prospect of Christmas was looming large and making me quite tearful and full of dread.  I was gearing myself up for a disastrous first Christmas here. A travesty of the warm and homey Christmases I had now lost forever. I had constructed the complete, disastrous scenario that was to take place.

Then I thought no!  Hang on a minute. This could, if I let it, be the best Christmas in ages because we are all free.  Free of all the limitations of looking after a sick person that being here, in a nursing home, has taken away because it is someone else's responsibility. For the first time in ages we could concentrate on enjoying being together and having fun.

And guess what, we did.  It really was the best Christmas we have had in a long time
But how was I able to achieve this quantum shift in perspective?  The answer is very simple: through something called Mindfulness that I have been introduced to through the Centre. 

What is Mindfulness then?  It is a toolkit of techniques that you can learn, including daily meditation, which together train your brain into a new way of thinking that is far more positive.  It is a technique that has been honed over many years into an eight week course and is delivered through a book and CD which are used in conjunction. The book explains the theory and the CD delivers the daily meditation practice which you are guided through.  It really was as simple as that  [for me] but as with all things it is the simplest things that are the hardest. And so yes,  I found it very difficult at first.  I found it hard to concentrate and that my mind kept wandering. Perseverance is necessary but improvement and therefore encouragement come quickly.  It can also be very helpful at times like this to have someone else to be in touch with in order to compare notes and offer mutual support.

My personal experience has taught me that what you really need in order to take up Mindfulness most successfully is a willingness to change and an openness of heart and mind.  You need wholeheartedly to commit yourself to those 10 minutes a day and ideally to finishing the eight week course. If you can do that then the changes just seem to flow by themselves and to happen almost effortlessly

I see no point in going into great detail about the process.     Firstly because this will be different for everyone so your experience may be quite different to mine, and secondly because this is done so much better by Mark Williams, the author of the book 'Mindfulness: A practical guide to finding peace in a frantic world'.

I initially took up Mindfulness as I felt I needed some support over Christmas in order to get me through a particularly difficult and emotionally draining time.  To make matters worse a doctor had temporarily removed my antidepressants with disastrous results and at the very worst time of the year for me.   I found myself ricocheting almost uncontrollably between states of red hot anger and sad weeping. 

I had heard that meditation had the ability to raise the levels of serotonin in the brain, much as antidepressants do.  So originally I was looking for a replacement for missing antidepressants to get me through Christmas. I didn't realise what a life-changing thing I had stumbled across.  Mindfulness has already delivered this and much more besides and I am still only early on in the process (at week four of eight)

I have found that general benefits include: improved creativity and improved concentration and focus (less likely to be distracted), better time management and much better relationships. Oh and food tastes great!  As if I never tasted it before
MS-related benefits include less fatigue and better fatigue management, improved memory and improved sitting posture.

I have learned a lot about myself; what a control freak I am and how difficult this can be for a wheelchair user with MS who cannot control her physical environment very easily and how this can lead to very negative frustration.   I have found out what enormous benefit there is to be able to let go of control when I choose to. This is a crucial point about Mindfulness; it does not change your personality, merely allows you to be aware of the choices you are making and helps you to make better ones. 

I definitely intend to continue with the Mindfulness course and want to take these learnings forward into the new year.  If you are interested and decide to give it a go, then the good news is that you can join a class and learn in a Group at the centre which has the advantage of giving you the support of a group of people who are experiencing similar difficulties to you. Teacher/facilitator  Sarah Jones will be running classes in the new year so keep an eye on Centre noticeboards or leave a message at Centre reception. If you have any questions Sarah would be delighted to talk to you she can be reached on sarahjones.874@btinternet.com or call 07973 156331. Sarah will also be running classes via Skype for those who find meetings problematic.  There is no charge for members except the customary donation

Mindfulness has been proven to be of enormous benefit to people with long-term illnesses.  You may not be able to cure the MS but you can certainly change your attitude to life and improve the quality of it.  I would highly recommend giving Mindfulness a try.  After all you have absolutely nothing to lose and potentially everything to gain.

January 2014