– By David Sweeney

Four years ago today, the Sweeney family received the devastating news that their mum, Christine, had Motor Neurone Disease (MND). Now David is sharing the story of his mum’s diagnosis, the heartbreak of losing both his parents a year apart and why he’s taking on MND Scotland’s overseas trek to the Himalayas in 2021.

My name is David Sweeney, I am 37 and live in Bridge of Weir near Glasgow. I am supported by my wife Lynsey, and we have two children, Reid (5) and Elise (3). I have been fortunate enough to work as an Airline Pilot for over 15 years – it has always been my dream job, and I thoroughly enjoy it. Although it comes with its challenges, I love the fact that every day is very different.

My Mum

My involvement with MND comes through my Mum, Christine, who was diagnosed in June 2016. Mum was born in Glasgow in 1955 and lived a very full and active life. Mum served her whole working life at Glasgow Airport, initially as a ground agent before my sisters (Jenny and Beth) and I were born, and on returning to work as a Foreign Currency consultant before retiring shortly before her diagnosis. She really loved working at the airport, particularly the social side of things… she really was a people person. The only thing she disliked were the early starts. Mum was also a very creative person, and had her own flower arranging business. Her Halloween costumes were a thing to behold – my two sisters and I always had standout homemade costumes! In later life, Mum’s great pleasure came from her five grandchildren, who brought her so much joy.

Mum and MND

Mum initially realised something wasn’t quite right when she noticed that her speech had become a little slurred at times. She also noticed that her finger control was affected, in particular I remember her having difficulty pinning on buttonhole flowers at my sister’s wedding. After a referral from her GP, various tests were carried out over a number of months to do with stress, anxiety, and other neurological conditions.

As a family, nothing prepared us for the news on the 30th June 2016. I had just arrived in the staff car park at work, and will never forget speaking to Dad (Phelim) on the phone, and the shock and disbelief I felt when he told me it was Motor Neurone Disease. Needless to say, I didn’t fly that afternoon, but headed straight to Mum’s to be with the family. Despite all of the emotions, and although we now had a diagnosis – Mum hadn’t changed overnight, and we still had many fun times ahead of us all. From that day on, Mum decided that this was a battle that she was going to face head on, and she would maximise every minute that she had with her family.

One of the first things I did, was to find out more about MND. Like many others, I had recently done the ‘Ice Bucket Challenge’ but had very little knowledge of the condition. I knew that Stephen Hawking had it, and therefore expected that Mum could live for many years with it. Naturally, Google seemed a good place to start, but that quickly led to MND Scotland’s website, which was much more practical – with sensible, compassionate factsheets explaining the condition, and emotional reactions to a recent diagnosis. My Dad and I met with MND Scotland, who talked us through so many things that would help us as a family – these included the welfare benefits that Mum was entitled to, counselling services, and equipment loan services. Mum and Dad also regularly attended the local MND meet-ups. I remember Mum being quite nervous about going to the first one, but she was embraced by a very warm welcome. She quickly appreciated the benefit of the advice shared, the comfort in knowing that she was not in this alone – and ultimately she made many great friends there. 

Enjoying life together

Mum’s MND journey was a little over 3 and a half years, and I cannot begin to tell you how much joy, and fun times we had over that time. As I mentioned earlier, Mum’s attitude from diagnosis was to maximise every moment that she was lucky enough to have. Mum and Dad had several foreign holidays, discovering hotels and accommodations that were specially equipped for people with mobility issues. Mum had a brilliant social life, and continued to play golf long after her diagnosis, getting her clubs adapted with arthritic grips to prolong her ability to play. She loved shopping, and would make for the shopping centres whenever she could.

As a family, we were constantly adapting to the changes in the condition, and trying to stay a step ahead in terms of accessibility and equipment. One thing we did shortly after Mum’s diagnosis was to bank her voice, into a computer file. The process involved around 6-7 hours of Mum saying phrases into a computer at home, and the data was processed and sent back as a voice file. This allowed Mum to speak with her own voice for the rest of her life. MND Scotland also provided a tablet for Mum which allowed her the ability to talk and communicate online when her own voice was failing. Mum saw every aspect of MND as a hurdle to be leapt over, and a challenge to be overcome. Her positivity and lust for life was evident to everyone she met (and you meet a lot of new people!), and meant that caring for Mum was a pleasure – she was always smiling and laughing.

Losing our Dad

Almost two years to the day of Mum’s diagnosis, my Dad – who had recently retired and cared for Mum on a full-time basis – was diagnosed with a malignant stage 4 brain tumour. It came as a complete shock to us all, as Dad was such a pillar of strength within the family. Dad had surgery straight away to remove as much of the tumour as possible, and thereafter embarked on a period of radiotherapy. My sisters and I quickly had to reorganise our lifestyles to help care for Mum at home, but also look after my Dad now in ill health. There were a number of challenges, but using every available resource we were able to support both Mum and Dad at home. Unfortunately, Dad’s cancer was very aggressive, and just over 6 months later he passed away peacefully at home, with Mum and his children by his side.

The ultimate goal

We were all left a bit numb, and stunned at the prospect of life without Dad. My Mum’s strength in what was an unbelievably cruel situation truly inspired us all. She held the family together, despite her own ailing health. We now had to look ahead and plan for the future. Our ultimate goal was to keep Mum at home if possible, as this was her wish. With significant help from MND Scotland’s advocacy service, we were able to secure a package of care for Mum which included overnight care, and would allow the prospect of Mum living at home with as much independence as possible. Her new tablet, controlled by head movement, gave Mum access to the internet, emails, WhatsApp, her video doorbell, Amazon (there was a delivery almost every day!), and allowed Mum to control the TV – and most importantly… Netflix!

We had continuous support from MND Scotland throughout, but most especially in the time after Dad passed away. The counselling service provided a wonderful comfort and understanding in those dark days. With significant help from MND Scotland’s advocacy service, we were able to secure a package of care for mum which gave us the flexibility to organise overnight care. This decision allowed Mum to live at home with as much support and independence as possible. As a family we also received some complementary therapy sessions like massages – this was the highlight of Mum’s diary!

Mum had also been spending all of her time in a wheelchair, which was not appropriate for long term use, so MND Scotland provided us a with a grant to buy a specialist chair which provided so much rest and comfort for Mum – another life changing facility which was so gratefully received. But in what was Mum’s final year, we were afforded two wonderful breaks at MND Scotland’s phenomenal lodge in St Andrews. The facilities there are second to none, everything has been so well thought out, and it made a holiday for us a reality. We were blessed with amazing weather on both occasions, and made memories that will stay with us all forever. It gives me such a feeling of warmth recalling memories of those trips, and as a family we are just so grateful that such a place exists for families like us to use.

Mum enjoyed just over a year after Dad passed away, and was at home until the very end, with my sisters and I by her side. Mum was 64, and as difficult as it was losing her in such tragic circumstances, we all realised how well she had lived her life, in particular after her diagnosis.

The next challenge

About two weeks before Mum left us, MND Scotland announced their next biennial charity expedition – to the Himalayas and Nepal. I was very excited to hear of their plans, as trekking in Nepal has always been one of my great ambitions. After a brief discussion with my family, it became very clear that ‘this was the one for me’. It was always my intention to raise money for MND Scotland, and offer just a fraction in return to what have given to Mum and our family. I have been waiting for the right event, something that was achievable for me – but also something that would require hard work, physical dedication, and would be a real lifetime’s achievement. I was so lucky to be able to tell my Mum that I would be doing it, and I know how proud she will be.

This will not be my first expedition, but I’m sure it’ll be the most challenging. Over the years, I have been involved in a few lesser treks. The most intense one so far was the ‘Caledonian Challenge’ which involved hiking 54 miles of the West Highland Way non-stop in 24 hours. Despite the preparations, my feet were blistered to such an extent that I needed to wear flip flops for a full week afterwards. But the Himalayan challenge brings teamwork, high altitude, long trekking days – and everyone working towards the same goal. To raise as much money as possible for a cause so dear to all of us.

I have a few fundraising ideas, the first of which is a custom designed MND neck scarf this versatile headgear is part of our Nepal kit list. My sister Jenny produced three fantastic designs using the idea of the cornflower, the international symbol of hope for those with MND. I’m not so used to ‘modelling’ so you can probably tell I was in hysterics the whole time. If you happen to be interested these can be purchased by emailing me at davidsmndnepaltrek@gmail.com for the price of £12 each or 2 for £20 with all of the proceeds going to MND Scotland.

Thank you for taking the time to read my story. Anyone in Scotland whose lives have been touched by MND in some way would tell you how important this charity is. At every twist and turn of Mum’s MND journey, MND Scotland were there for us. Now it is time for me to do all I can for them.

To support David’s fundraising efforts for his Himalayas Trek you can donate to his total here, or why not join David and sign up to be part of Team Nepal 2021 here?!