MND Awareness Month – 2017

It’s just over 8 years since my Dad got the official diagnosis of Motor Neurone Disease, which means that we’re now in the territory of having lived for longer without Dad than he lived with that diagnosis – that feels pretty frightening.

June is MND Awareness Month, and I’ll be the first to admit that this June I have been much quieter than usual in supporting that awareness raising. Now this is certainly not because I have given up, or don’t want to be interested, but more that I didn’t want to spend the lead up and aftermath of my wedding concentrating too hard on the horrific disease that meant my Dad wasn’t there to walk me down the aisle.

I’m very fortunate to have brilliant people to help fill those gaps where Dad’s absence was felt most keenly – my brother walked me down the aisle, and both my mum and brother gave speeches which I know would have done my Dad proud. My mum, two brothers and sister and all my family and friends joined me on the dance floor when perhaps, had he been there, I’d have had a dance with Dad. We danced to Toploader – Dancing in the Moonlight and it was such a special moment.

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Even without Dad there, I had the best day of my life, and I know that he was in everyone’s thoughts throughout the day. I like to think that the thunderstorm that crashed over the church during the service was his idea of a giggle, while still making sure our day ran perfectly!

Tomorrow (21st June) is Global MND Awareness day. I remember seeing Awareness Day on social media several years ago, and it was so comforting to see as at that point very few people that I met knew about, or had even heard of, MND. Since then we have had the Ice Bucket Challenge and The Theory of Everything, both adding huge levels of awareness around the disease.

But that isn’t a reason to slow down; if anything, it is a reason to double our efforts and to carry on our fight against MND. With the threat of less money in various areas, it is essential that the global community rally for more funding for research in to MND, and more locally here in the U.K to campaign against cuts which will inevitably affect those who are vulnerable and living with MND, or caring for someone with MND.

And you can help.

– Share the MND Association’s tweets and Facebook messages over the next few days and share information with those who might not know anything about MND
– Sign up to the MND Association’s campaigns network; https://www.mndassociation.org/get-involved/campaigning-influencing/join-us/campaign-network/
– Become a volunteer or raise money – check out the website for ideas!
– Sign up to an event; our family and friends plan to run the Sheffield 10k in September, you could join us!

Whilst sometimes it may feel pointless, as though nothing is being achieved and like we are even moving backwards, if we look back to where we have come from we will see that is not the case.

I will remember how it felt like nobody cared, and I will remind myself of the £7m raised through the ice bucket challenge. I will remember how I felt when a shop assistant accused my Dad of being drunk as his speech slurred and thought we were making MND up, and I will remind myself that today that probably wouldn’t happen.

I will remember how we were visited by carers, social workers, doctors, nutritionists and speech therapists who didn’t really understand the disease and how quickly it could – and would – deteriorate, and I will remind myself that today, with more awareness and education, that others will hopefully not experience the same problems we did.

I will remember how, when Dad was diagnosed, that every person I told I had to explain what MND was, and I will remind myself how when I tell someone now that Dad had MND that they nod and understand the gravity of the condition.

I will remember that first Awareness day that I was aware of, back in 2010, and I will remind myself of all of the positive movement, not forgetting the negatives along the way, and I will feel proud to be part of a team working towards a World Free from MND.

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48 hours in Dublin 

This last week we headed off to Dublin on a 48 hour jaunt to celebrate Nick’s 30th birthday. With £10 flights each way and a cracking deal on booking.com for a guesthouse we were on to a winner! 

Our accommodation was amazing: it was in the south of the city, a beautiful Georgian house with a red door and brass door knocker. Leeson Bridge Guesthouse even treated Nick to box of birthday chocolates too – nice touch! I also have to mention that we had a sauna and a jacuzzi in our room! 


We arrived in Dublin around 8.30pm, and after a 30 minute bus transfer to our accommodation we settled in the local for a few pints before bedtime. 

Thursday was Nick’s birthday, and we headed out first thing to explore the city. After a breakfast from a little cafe we wandered round Trinity College, along the river, to Dublin Castle and through St Stephen’s Green.


Given that it was Nick’s birthday, I’d booked us a nice lunch at a restaurant called Dax – it didn’t look anything special outside nor inside, but the food was incredible, and at 30€ each for three courses it was a bargain! I had a goats cheese salad, followed by veal and Eton Mess, whilst Nick had pork belly, duck and a chocolate tart. 





Suitably full, we headed back to our room to make use of the sauna and jacuzzi before heading out on a pub crawl that evening.

There were so many pubs that we wanted to go to, and we managed six, though we also went back to our favourite at the end of the night! Galway Bar Brewery have some fantastic pubs in Dublin – we went to Alfie Byrne’s and Against the Grain – and we also went to The Porterhouse (central and Temple Bar), The Temple Bar and The Norseman. The beer was fab, we had food and played board games and listened to some great live music too!


Friday morning saw us checking out and heading for breakfast at Sophie’s, in the Dean Hotel. Nick had a banging full fry up, whilst I opted for French toast which was tasty, but I had regret over not having the fry up! 


We spent the rest of our morning (and some of our afternoon!) at the Guinness Storehouse, which we found fascinating. We loved learning about the brewery, the processes and the impact of Guinness on Dublin, and of course enjoyed pouring and enjoying our own pint of the black stuff in the Gravity bar with 360 degree views of the city. Definitely recommend it!


There just so happened to be another Galway Bar Brewery pub – The Beer Market – nearby, so we went for a drink and a late lunch. Then there was just enough time for a couple of drinks and a catch up with a friend who just so happened to be in Dublin before hometime.


We loved the city – it’s expensive, yes, but for a short break it’s do-able, and it ticks all the boxes! 🍀🇨🇮

From London to York with the MND Association 

When I first started writing this blog post, I expected it to be a rundown of my volunteering in my last few months in London, and my first few in York. 

However, as I started writing, I realised there was more to it than that: there was the unspoken battle that raged in my head as I debated taking a step back from volunteering for a while. 

I was busier those last few months in London than I realised: from attending the annual campaigns contact weekend to sharing some ‘youthfulness’ at Dave Setter’s Working Better Together event, from sharing my Dad’s, and my family’s, journey with MND with a group of teenagers on the NCS programme, to dancing the night away at Daisy’s summer ball.



As my time living and volunteering in London came to a close, I surprised myself by finding myself debating whether our not I wanted to continue volunteering with the MND Association when I moved to York. I questioned whether I was causing myself unnecessary sadness by spending so much time in such close proximity to this horrible illness. I wondered whether there was any point: how much could I, just one volunteer, achieve when I hadn’t even been able to do anything to help my own dad?

Every time I emailed my MP, or a councillor, I was reminded of how I didn’t lobby on my dad’s behalf. 

Every time I fundraised, I was reminded of how I did not find the money to improve my own dad’s quality of life. Now I realise that to have been able to communicate with dad would have been priceless, and I will regret not making that happen for the rest of my life.

Every time I heard of someone being newly diagnosed with MND, or I heard of someone with MND passing away, I was reminded of dad’s diagnosis and death, and I felt it so keenly that it could have been yesterday. 

Every time I questioned whether or not I was doing a good enough job as a volunteer, I was reminded of how I did not do a good enough job as a daughter when my dad was alive.

In the end, after much deliberation, I decided that I would at least find out what was going on in my soon-to-be-hometown of York. When Sarah Milner told me that a group was being set up but hadn’t even met yet, I felt like somehow it was meant to be.

Since moving to York in September, I have chatted to my new MP, Rachael Maskell, in parliament, gone along to my first support group, met with other new volunteers who will make up the new York group, met JC, campaigns manager in the north, to get the lay of the land and make a plan of action, and also found myself tweeting from @MNDAYork. 


And so I guess, that for now at least, you’ll find me in my blue t-shirt, doing my best to make a difference for people living with MND.

#ShortenedStories

Today is MND Global Awareness Day. I remember 2013’s MND Awareness Day, just after Dad had died. Nobody knew very much about MND; the ice bucket challenge was yet to come, as was The Theory of Everything. We’ve come so far with raising awareness, but today will help us to raise the profile of MND even more.

This year’s Motor Neurone Disease (MND) Awareness campaign is called ‘Shortened Stories’. It highlights how many people’s life stories are cut short by MND; 50% of people die within 2 years of being diagnosed.

On the 1st June my fellow committee member from the MND South London group suggested that the group could use MND Awareness month to share the ‘Shortened Stories’ of our families and friends who had inspired us to volunteer for the Motor Neurone Disease.

I thought this was a fantastic idea, but it also filled me with dread, as it would mean I would have to write about my Dad’s story, which was cut short in April 2013. He was 49.

Let me set the scene for you: my Dad really was the life and soul of any party. He was known for it, among family, among his friends, among my friends. When I was 17 I secretly invited about 25 friends over for a party and, rather than kick them all out, he shrugged his shoulders, put some music on and got cooking a chilli for everyone; this is the man he was.

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He was a huge sportsman – watching and playing. We’d spend every other Saturday watching Huddersfield Town play; he coached the Scratch Team at the golf club to victory; he played football, golf and cricket, and taught me, my brothers and my sister to do the same – we’d often have a kick about or a game of cricket on the back lane.

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When I found out he was going to die, I was surprised not to hear the noise of my heart breaking.

He lost his voice within months; I used to have dreams where he would talk to me. I’d wake up in tears when I realised it was just a dream. He was dead within 4 years, and I know we were lucky to have him for that long.

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I could write about what his life would have been like for pages and pages, for he was always doing something with us, or with his friends: instead I’ll keep it very brief, and selfishly, only on the shortened story of Man and Eldest Daughter:

Since Dad died, I have graduated. I’ve transitioned in to the life of ‘proper work’. There was the first Christmas without him going downstairs first, and saying ‘he’s been!’ There have been two more Christmas’ since then. There have been family holidays without the chief planner. I moved to London.  I met the love of my life, and he asked me to marry him.

There will be a Huddersfield Town season ticket, without him sat next to me. There will be a ‘first home’ where he isn’t there to help do the DIY. There will be a wedding without a Father of the Bride speech. There will be his first grandchildren, who will never know him. There will be countless occasions where he will be missed so sorely that it often feels like my heart is breaking all over again.

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#ShortenedStories

Volunteering is a game changer

Whilst I was at Uni I decided I wanted to volunteer more with children. My day job had been working with children for around 6 years, and I felt like I wanted to ‘give back’ and volunteer instead of working all the time. The 1st January saw me running a quick Google search and firing off an application to volunteer at CCHF All About Kids, who provide amazing residential holidays to disadvantaged children in London.

Me volunteering at a CCHF residential camp

Ney mind it was over 5 hours away – I wanted in, and my first camp didn’t disappoint; it was a huge challenge with very little sleep, but I loved it. The kids were amazing, I made some great friends and before long I was volunteering regularly. A few years down the line I met Nick at a camp, and we embarked on a relationship that spent alternate weekends in Huddersfied and London.

Nick and I decided we wanted to go and do some more volunteering together, and we stumbled across Over the Wall, part of the Serious Fun network who provide life-changing camp experiences to children with serious illnesses and their families. We spent a week parading round in fancy dress, covered in face paint and singing at the top of our voices…and along the way we fell that little bit more in love.

Loving some blue glittery facepaint at Over the Wall

Soon enough I was living in London with Nick. I was working at the charity vInspired, supporting an incredible team of 25 18-25 year old volunteers who were campaigning on big issues in their communities. I also joined the Motor Neurone Disease South London Group, where I met the most amazing group of friends, and volunteered with them to improve the lives of people living with MND in South London.

At the London Marathon with the MND South London Group

I’ve been in London for nearly 2 years now, and My job is recruiting, training and managing incredible volunteers at the charity Whizz-Kidz, who work to transform the lives of young wheelchair users. 

Through volunteering I’ve achieved so much: I’ve raised thousands of pounds for both the MND Association and CCHF, along with friends I’ve met along the way; I’ve visited Buckingham Palace to celebrate CCHF’s 130th anniversary; I’ve met MP’s in Parliament and talked to them about the impact of Motor Neurone Disease; I’ve run half marathons and conquered the 3 Peaks Challenge; I’ve met friends for life who have made living in a brand new city infinitely better; I’ve met the love of my life.

At the top of Mount Snowdon with my Dad, who is the reason i volunteer with the MND Association

Nick and I probably would never have met if it hadn’t been for volunteering, and we’re now engaged and planning our wedding for next year. Volunteering has literally changed my life for the better, and I wouldn’t change my job, or my own volunteering, for the world.

  

Top left: at Parliament with Sadiq Khan, clockwise; in the garden at CCHF, young volunteers at Whizz-Kidz, me, Nick and my friend Anna at the Great North Run, me and Nick at an auction raising money for CCHF, my amazing colleagues at vInspired.
  

Why talking about dying matters

If you’ve ever made it to my blog page before, you’ll know that my dad died in 2013 after a diagnosis of Motor Neurone Disease in 2009.

I talk about dad all the time. I talk about motor neurone disease. I don’t shy away from the ‘d’ word – my dad died – despite the reaction it sometimes gets as people worry that they’ll say the wrong thing, or panic and not know what to say at all. It doesn’t bother me – we should all feel comfortable talking about death. It’s perhaps one of the only things that will affect, and happen to, every single one of us.

A few weeks ago, my Grandad Albert died in his sleep at the grand old age of almost-94. He wasn’t poorly. 

His was a very different kind of death to that of my dad’s, who was 49 when he died and following a long period of being very poorly. 

  
I’ve found that people react differently to me talking about Grandad dying to my dad dying – there’s almost a sigh of relief when they realise he was old, and died in his sleep. “What a great innings!” and “At least it was in his sleep” have been 2 things I have heard a lot these last few weeks, though it doesn’t necessarily make it any easier for a grieving family who have lost their dad/grandad. 

No matter what my reaction is to those lines, the fact that people feel comfortable enough to react is a breath of fresh air to April 2013.

The Dying Matters Coalition was set up to promote public awareness of dying, death and bereavement. Today, the 15th May, is the last day of the 7th annual Dying Matters Awareness Week. The Coalition’s mission is to help more people talk more openly about dying so that death and bereavement can be seen and accepted as a natural part of everybody’s life cycle.

  
Last night I was fortunate enough to volunteer at the Open MiNDs ball in London, hosted by Zoe Ball to raise money and awareness of Motor Neurone Disease. Zoe’s step dad died within a year of being diagnosed with MND, and it was so refreshing to see a well known celebrity talk about death – in a room full of people – openly, honestly and beautifully. Sarah Ezekial and David Setters, two people living with MND, also gave speeches and didn’t shy away from talking about the difficult subjects. 

  
Neither my dad nor my Grandad talked very much about their wishes for what would happen after they died. This means that our family had to make some big decisions, hoping and praying they were the right ones. It’s made me realise how important it is to talk about things such as what you’d like to happen at your funeral.

The reason I think it’s so important to talk about death is because when someone close to you dies, the last thing you want to do and to spend your energy on, is worrying about how other people will react when you tell them about your bereavement. The sooner we talk about dying and break the taboo of death, the better.

For more information on the Dying Matters Coalition please click here

3 years on – gone, but absolutely not forgotten

3 years ago today, my Dad died. He died, as most people reading this will probably already know, from Motor Neurone Disease, a progressive disease that attacks the motor neurones, or nerves, in the brain and spinal cord.

For my Dad, this meant losing his voice in 2010, his ability to eat and drink normally in 2011, his ability to move independently in 2012 and his life in 2013.

As hideous as this was to watch for me, my younger brothers and sister, my Mum and the rest of my family, there were things that made it a little more bearable. For example, the MND West Yorkshire branch provided my Dad with an iPhone when he first lost his voice, which he used to type what he wanted to say, and an app would speak on his behalf.

Another thing that made things a little easier was some of the care he received – he had a fantastic GP. Ultimately, what made most of it bearable was Dad’s attitude, especially in the first 3 years of his diagnosis from 2009, when he would continue playing 2 rounds of golf a day, and finishing off with a couple of pints through his PEG tube.


However, towards the end, when things were pretty rough, Dad couldn’t communicate with us using his phone or his iPad, and we waited to hopefully receive a piece of equipment called an Eye Gaze, which Dad could have used to communicate with us, rather than us asking a million questions and waiting for a thumbs up to say whether we were on the right lines or not.

We got the go ahead for an Eye Gaze eventually – in the week after Dad died. That meant my Dad died without being able to speak with us properly for months. We didn’t know his final wishes. We didn’t know how much pain he was in. He couldn’t tell us what he felt, or what he wanted, and this fact has haunted me ever since.

To mark the 3rd anniversary of his death, I would like to really focus on MND’s latest campaign, Champion the Charter. The campaign builds on the success of the Charter which was signed by over 33,000 individuals and was presented to Downing Street last summer. The campaign aims to get more councils adopting the charter, which aims to ensure that people with MND and their carers receive the right care, in the right place, at the right time, live the highest quality of life possible and achieve dignity in death.

The progress made in the last 3 years has been phenomenal, and it is highly likely that if my Dad was around today and needing an Eye Gaze, he may well have received one before his death – I cannot explain how incredible that would have been.

Please, please take 5 minutes to drop an email to your local councillor about the Charter. It’s so easy, as the MND Association have set out all you need here including email templates and other materials.

It would be a fantastic legacy for all those who have died from MND without the right care and equipment, to ensure that others don’t suffer this indignity in the future. Please get in touch if you have any questions and I can point you in the right direction.

Missing you every day, Dad, but particularly today. I’ll have a Crabbies for you later on!