Until there's a cure ... there's care

Duncan and Kat Bayley

Foreword: Look, I know the punctuation, spelling and other typological niceties aren't right. It's an artefact of using a speech synthesiser that you have to fiddle with these things to get it sounding natural. For instance, I happen to be fully aware my wife's name is spelled Kat, but unless it's spelled Cat, the program mangles it into something like Kaht. Some of the jokes fall flat too. I blame that on not being able to place the stress or emphasis on the right word or syllable. I refuse to accept that it is because they're not funny.

Many people approached me after the talk to ask why I use a female voice. The machine speaks for me, not as me. I don't want its voice mistaken for mine. As anyone who met me earlier in my life could tell you, I was truly in love with the sound of my own voice. For authentic reproduction, install eTriloquist (www.etriloquist.com) and select the voice Zira. Enjoy! db

It feels very odd to be writing a speech about living well with MND. I am very conscious that the support available to me is not available to everyone. I am also aware that the shock of an MND diagnosis, followed by its generally rapid progression, leaves many people spinning as they lurch from one crisis to another.

I have been let’s say, "fortunate" enough to have had MND for nine years, instead of the average two. While I am grateful MND didn't claim me seven years ago, I am often in uncharted territory, I didn't expect to make it to 32, and now I'm pushing 40. I have been living year to year, and as I surprise myself with my longevity, I've grown concerned with how long has passed and how I have spent it. I don't want to feel like I've been waiting to die.

Of course, when I was first diagnosed, I immediately tackled a bucket list trip to India Japan the United States and Canada. I spent six months mooching off friends in London and Amsterdam, until my money started running out, and then I managed to work for another six months. Along with my wife Cat and my friends, I organised two Rides For MND between Amsterdam and London. On the first, I dragged my dad along. On the second, my brother had to drag me along literally! On the back of our tandem bike I would start daydreaming, and had to be shouted at until I started pedalling again! With both rides combined, plus companion events held by friends in New Zealand Vancouver and here in Melbourne, we raised about 150 thousand dollars for MND Associations around the world. Apart from my wedding day, they are some of the proudest and happiest days of my life.

After I returned to Melbourne, and Cat had joined me, we started to try to establish a life here. Our goal above all else, was a form of normality. We expected MND to be a heavy feature in our lives, but we didn't want to let it stop us from travelling, from entertaining friends and from doing the things we enjoyed, like going to the cinema. Starting out with this mindset; that MND is just a feature, has given us the strength to prioritise how we want to live our lives, rather than have MND dictate it to us.

Cat was my only carer for our first two years in Melbourne, but she was keen to continue her career. It is critical to Cat that she keep her skills fresh, and her work has been a form of respite for her, as well as a means of making new friends in a foreign country. However I'm ashamed to admit I didn't handle it well at the beginning. In fact, one afternoon, I ran away from home! Ridiculous behaviour for a 33 year old! The last time I’d run away from home, I must have been four, and my parents had found me at the milk bar down the road, trying to buy lollies with leaves!

In order to maintain a normal life, we lean heavily on all the support we can. From the State of Victoria and Merri Health we get funding for Carers who enable Cat to go to work and for me to visit my university for meetings. The Allied Health and Neurology teams at Bethlehem and Merri Health give me critical advice on everything from symptom management to keeping me fed and crucially, able to communicate. MND Victoria provide equipment and advice that are essential for keeping me mobile and of course, my Carers who keep me comfortable and facilitate the work I do.

I have a team of dozens of experts behind me who listen to my problems and translate them to solutions. And I must highlight the immense amounts of support from the family and friends whose loyalty and patience I treasure. So any success I have had since my diagnosis is due to the people and institutions around me.

The Companion Card makes a huge difference to our lives and living them well. Getting half-price tickets to shows movies and events reduces the financial friction of going out and getting involved in Melbourne. It's appreciated because there are so many other frictions to just get me dressed and out the door. A highlight was getting to attend the Australian Open mens and womens finals this year. The same goes for the half-price taxi program which we regularly use and have even used during trips to Sydney and Queensland.

The brief message here, is to take advantage of all the available supports you can. If you can't find a support you think should be there, ask around. Often they are not well advertised.

Of course, the point of these supports is to provide you with the independence you need to achieve your goals, even a fundamental goal like staying at home around your loved ones and friends. I cannot think of a better or more commendable goal for those with MND, provided you have the support and equipment available to make it safe.

My goal has been to be as independent as possible, but paradoxically, that means accepting an awful lot of help, from being pushed in my wheelchair to having documents and letters scanned into my computer so I can read them at my own pace and leisure. The key is to be ruthlessly outcomes-focussed. What matters most is THAT something gets done, not in how it gets done.

That can take an awful lot of adapting to, especially when you are a particular person like me. But remember that the people around you are doing their best, and trust in them to see things done properly, because the energy expended to get things done in what you know as the right way, might not be worth it. Anyway, those who know me will realise I have a long way to go before I can be seen to be taking my own advice in this regard.

Of course, the most critical goal for many people living with MND, and the key to reaching further goals, is the ability to communicate itself. As our speech slurs until even those closest to us can no longer comprehend us, technology that enables us to fully describe our emotions, thoughts and desires is so very critical to our being involved in the world around us. I remember when my grip on speech loosened, I felt myself gradually but surely disengaging with the social world around me. It's a burden to memorise all the things you want to say and when you have an opportunity to communicate, to triage what you want to say according to the urgency of the request, your energy levels, and the patience and attention of your audience.

That's why the eyegaze has made such a difference to my life and those close to me. The ability to express myself fully, clearly and easily gives me an indispensable lifeline to those around me. The fact it's mobile lets me engage with people out of the home. This lets me and Cat venture out beyond our house, which is essential to our sanity and expands the group of people I can interact with.

That I have been supported in my goals naturally keeps my eyes open for opportunities to give back. This doesn't need to be grand. In fact, it should start with those nearest to you. It is important that they know how much their efforts mean to you. It's also important that primary carers get a break so they aren't completely exhausted. It can be a stifling isolating job and they need time to recharge and to pursue their own goals.

Sometimes the best way to honour those around you is to be the best person you can be. How you choose to do this is naturally up to you. It may be very simple, but your efforts do not go unnoticed, and provide validation for those who work so hard to keep us comfortable.

If I had to sum up the experience of living with MND in one word, it would be frustration. Frustration at losing the ability to be independent. Frustration as your loved ones struggle to come to grips with your condition and its impact on their lives hopes and dreams.

I've found the only thing that trumps frustration is patience. And initially, when I was given two years to live, I can't say I had a lot of it. But generally I think I am a patient person. That's what a degree in mathematics taught me, although perhaps it's more properly characterised as perseverance. With patience, I can wait out the frustration as those around me do their best to understand my needs and provide them.

As for the more existential frustration, there is not much to be done but accept it, and accept the grace that provides whatever help it can. I don't like the sacrifices people make for me, but all I can do is to be the best person I can be.

Of course, it's difficult to cultivate patience and everyone certainly has a limited reserve. The primary thing is to have perspective. A LOT of perspective. A very very LONG distance perspective on your problems. No matter how hard things get, there are still many people out there I would never swap places with. Imagine having MND at any other time in history!

In my nine-year experience with MND, I've seen giant strides in the advancement of the available technology, equipment and advice, all of which have given Cat and I a greater quality of life than we’d imagined.

I wouldn't go so far as to paraphrase the Prime Minister, "There's never been a more exciting time to have MND", but there have certainly been worse times.

So for me living well with MND is a bit like the themes to this conference. Take full advantage of the care and supports available to you. Collaborate and communicate with those supports to build a platform on which you can achieve your goals. Enjoy the conference and I hope you all come away with fresh thinking and renewed energy to assist us all in living well with MND. We aren't so much leaning on the support you all provide. We're standing on the shoulders of giants.

Address to the 8th National MND Conference, Melbourne, Victoria, 12 September 2016 by Duncan Bayly

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