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

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!

És a Lisboa que eu amo: a weekend in Lisbon

Back in November and already anticipating the January Blues, Nick and I found ourselves drawn to the Ryanair flight sale like moths to a flame. The cheapest deal was to Copenhagen, but we plumped for Lisbon (£35 return) and crossed our fingers that the average January temperature of 13 degrees would feel tropical after the cold in the UK.

We arrived in Lisbon on a Saturday lunchtime, and managed to successfully navigate the metro system to Santa Apolónia. We were staying in an AirBnB in Alfama, the oldest district in Lisbon, and at £43 per night (with all fees included) we were over the moon to find a bright and airy studio flat, complete with a complimentary bottle of wine waiting for us. 

  
 We asked for a recommendation for a late lunch from our host at check-in, and we were advised to walk up the streets and ‘follow your eyes and your nose!’ We decided to take this advice and, slightly bemused, stumbled upon the restaurant Tolan – it looked a little run-down, but definitely more a family run restaurant than a tourist trap, and so we headed inside. Asked if he would like a small or large red wine, Nick went for a large (at 3.60€ why wouldn’t you?) and we were a little shocked a moment later when a litre jug of red wine landed on the table! This set the tone for what was to become more of a bar crawl weekend interspersed with some sights, rather than a cultural extravaganza! The food was delicious – the menu featured lots of pork, and the special complete with clams and mussels was delicious. 

  
  
We walked across the city, only slightly  inebriated, towards Bairro Alto, which we had been told was an area full of people spilling out from the many bars in to the streets, drinks in hand. Unfortunately for us, the area seemed very quiet: we thought maybe the early weeks of January were to blame. Nonetheless, we settled ourselves first in to a cocktail bar, and then several other bars, meeting a range of friendly people along the way, including some Spanish rugby fans! We ended our evening in a lovey restaurant back near Alfama – unfortunately, after all the drinks, I can’t remember what it was called!
  
  
Day two arrived and, determined to soak up some culture before hitting Lisbon’s plethora of bars, we caught the bus to Belém, renowned for its Pastéis de Belém and the Jerónimos Monastry. It was worth the 5 mile bus journey just for the Pastéis de Belém alone! We’d found ‘Pastéis de nata’ (or egg tart pastries to you and me) all over Lisbon, but the decision is unanimous in that the ones in Belém are the best!

We also visited the Jerónimos Monastry, and the Tower of Belém – both UNESCO world heritage sites, and both beautiful to look at. From the waterfront there are incredible views over to the Ponte 25 de Abril suspension bridge, which has an uncanny similarity to the Golden Gate Bridge, and also to ‘Santuário Nacional de Cristo Rei’, or the Christ the King statue, inspired by Christ the Redeemer statue in Rio. We also had a good look at the ‘Padrão dos Descobrimentos’ – monument to the discoveries – where we decided against climbing up to the top as it was so windy!

  
  
  
  
We caught the bus back towards town, and jumped off at the Mercado da Ribeira, a food market put together by Time Out with a huge selection of food stands offering food from some of the top chefs in the country. What more could you want! We sampled bread, cheese and meat, risottos and chocolate cake, all washed down with beer and wine – yum.

  
  
  
We made a quick trip to ‘The sexiest WC in the world’ located in Praça do Comércio, with a rainbow of toilet paper, before we headed back up to Alfama. The plan was to make our way up to São Jorge castle, but we kept meeting dead ends in the web of medieval alleys and staircases. Apparently the area was designed this way as a defence system for the castle – it worked on us! After trying – and failing – to find the entrance to the castle we took refuge in a lovely wine bar. What was meant to be just one drink before the castle soon turned in to a couple more drinks – it started to rain, and we moved next door in to a small bar where I had the strongest carprinha of my life!

Sitting in the warm bar with our drinks whilst the rain lashed on the steep cobbled hill outside was perhaps one of my favourite memories of Lisbon. After the rain had stopped we stepped out in to a fresh evening and this time managed to successfully navigate the streets to a lovely tapas restaurant – Arcaz Velho – for dinner before falling in to bed feeling pretty exhausted!

   

   

  
Our third and final day arrived and we were anxious that we still had lots to see and do, not least the castle after yesterday’s aborted attempt. We started off with a trip on the famous number 28 tram, which we took from Graça all the way through the city to Campo de Ourique station. We walked back from there – a long walk! – calling in at the impressive Estrela Basilica, and for a lunchtime beer in the Jardim de Estrela cafe opposite. 

Once back in the centre of Lisbon we searched high and low for a restaurant where we could eat Piri Piri chicken – a surprisingly difficult task. We ended up at Bomjardin, a restaurant we had seen in various articles and food blogs, and it didn’t disappoint. We sat by the road and ordered spit roast chicken, fries and creamed spinach, complete with a pot of Piri Piri oil, which you can put as much (or as little) as you like using a brush. I’m a big Nandos fan, but this really was the real deal!
  
  
  
As our final day continued to run away from us, we soaked up the atmosphere of Lisbon’s lovely combination of back streets, busy squares and waterfronts, walking back to Alfama to collect our bags. We had just enough time to admire the stunning views across the tiled Alfama rooftops, and one last beer in a rather shabby bar before heading to the airport. Lisbon has left me with a lasting impression of tasty food, cheap drinks, wonderfully dilapidated buildings and charming streets. Lisbon wasn’t the kind of city break that we returned from feeling like we needed another holiday just to recover – but rather that we had soaked up enough sunshine (and alcohol!) to make it through the rest of a dreary month. It was so worth the visit!