From 1st to 8th March, a group of seven friends – including wine experts, owners and chefs from some of the UK’s best restaurants – will cycle over 2700 km from Edinburgh to Rome, climbing over 27,000 meters in altitude, all in aid of Motor Neurone Disease charity ‘My Name’5 Doddie Foundation’.
The cycle will begin at Edinburgh’s Murrayfield Stadium, continuing through London, rural France and trailing the Apennine mountains of Italy before descending into the group’s final destination at Rome’s Stadio Olimpico.
Riding in a continuous relay, through the night, elements and mountains, the team aims to complete the cycle by 5pm on 8th March – which will require maintaining an average speed of 17mph.
Brought together by a mutual drive of raising vital funds and awareness of this degenerative, incurable disease, the team includes Edinburgh native and Berry Bros. & Rudd Senior Buyer Davy Żyw, who was diagnosed with Motor Neurone Disease (MND) five years ago aged 30.
Despite progressive onset of the condition, Żyw, a passionate cyclist, will join the team for the last leg of the journey from Sisteron to Rome. This is just one cycle undertaken by Żyw since his diagnosis: in 2020 he completed the North Coast 500 in just four days, and in 2022 he cycled the ‘High 5’, a 275 mile route over the five highest roads in Scotland, raising over £150,000.
Joining Żyw is his childhood friend James Porteous, owner of Edinburgh’s Electric Spirit Co; James Snowdon, owner of The Palmerston and co-owner of Lannan in Edinburgh; Seamus Sharkey, Head of Beverage at JKS restaurant group; Shaun Searley, Executive Chef at London’s Quality Chop House; Davy’s colleague at Berry Bros. & Rudd, Matt Jones, who has planned the entire route; and Dubai-based Greg Shevill who will be flying over to complete the challenge.
The cycle forms part of My Name’5 Doddie’s wider All Roads Lead to Rome campaign, with over 50,000 participants expected to take part throughout the year.
My Name’5 Doddie was set up by Scottish rugby legend Doddie Weir who was diagnosed with MND in 2017, and later passed away in 2022. The charity is committed to a world free of MND and has already raised over £11m to support research projects and treatments – and ultimately work towards finding a cure. They also focus on raising awareness of the disease and being a voice for people with MND and their families.
Details for how to support the cycle can be found at:
A new project by researchers in Edinburgh aims to identify combinations of existing drugs that could be used together to treat motor neuron disease (MND).
Led by Prof Siddharthan Chandran, Group Leader at the UK Dementia Research Institute (UK DRI) and Director of the Euan MacDonald Centre for MND Research, both at the University of Edinburgh, the £3.3 million project is funded by the medical research charity LifeArc, as part of an ongoing partnership between the charity and the UK DRI.
The partnership brings together the strengths of UK DRI’s research into discovery science with LifeArc’s translational expertise to take exciting lab discoveries forward and translate them into tangible benefits for patients.
MND is a life-limiting condition that causes progressive weakness of the muscles due to the degeneration of motor neurons in the brain and spinal cord. There is currently only one drug approved to treat the disease in the UK, riluzole, which has only a modest effect.
There is an urgent unmet need for effective therapies to treat MND. But the brain is complex, and targeting one biological pathway with a single drug might not be enough to slow down or stop the degeneration of motor neurons.
The new project seeks to drastically accelerate the development of new treatments by identifying existing drugs which target multiple disease mechanisms implicated in MND.
Typically, new drugs can take up to 15 years to progress through development and clinical trial stages, but with this approach, treatments could be tested in the clinic within four years.
Prof Siddharthan Chandran, Group Leader at the UK Dementia Research Institute (UK DRI) and Director of the Euan MacDonald Centre for MND Research, both at the University of Edinburgh, said: “As has been shown for cancer therapy, using combinations of drugs that target different pathways might be our best chance of slowing or stopping the progression of MND.
“This innovative project is an important next step in identifying effective medicines for MND.”
In the first stage of the study, the researchers will prioritise the top drug candidates, using both laboratory-based tests on motor neurons grown in the lab from patient donated stem cells, and a machine-learning, artificial intelligence approach to review published scientific studies of MND.
Next, the top candidate drugs will be tested in pairs in combination in the stem cell models of MND, against different biological pathways known to be implicated in MND.
The ultimate goal is to seek regulatory approval to test the most promising and effective combinations of drugs in the Euan MacDonald Centre’s MND-SMART (Motor Neuron Disease – Systematic Multi-arm Adaptive Randomised Trial) trial.
This pioneering trial across 20 sites in the UK is designed to shorten the time it takes to find medicines that can slow or stop MND. Unlike typical clinical trials which test a single treatment, MND-SMART is testing several treatments at the same time. It is also an adaptive trial which means that new drugs can be added, and those proven ineffective can be dropped.
This new project complements another recently announced MND initiative, EXPERT-ALS, which aims to rapidly identify promising drug candidates in small scale trials, before definitive evaluation in Phase 3 platform trials such as MND-SMART.
Dr Paul Wright, MND Translational Challenge Lead at LifeArc said:“Our involvement in this research is part of an ambitious long-term £100m funding programme we have launched to help tackle neurodegenerative conditions and find treatments where none currently exist.
“By working with UK DRI we are uncovering promising life science research, like Professor Siddharthan’s, that we can support with funding or by offering our scientific resources and expertise in translational research.
“Ultimately, our aim is to accelerate the process of finding medical breakthroughs that can prevent and stop these life-threatening diseases progressing.”
A volunteer on-call firefighter and former rugby player has vowed to keep Doddie Weir’s fundraising legacy alive to help find a cure for Motor Neurone Disease (MND).
Rob Wainwright is a farmer on the Island on Coll who helps to protect his local community in his role supporting the Scottish Fire and Rescue Service. He’s also a former Scottish rugby captain, British and Irish Lion, and teammate of rugby legend Doddie Weir.
Three years ago, Rob founded Doddie Aid. To date, the mass participation event has raised around £2m for the My Name’5 Doddie Foundation, with the Foundation itself ploughing around £8m into MND research in the last five years.
Rob and Doddie remained close after their days on the field finished. Sadly, Doddie passed away last month following a battle with MND.
Rob said: “We are going through a period of sadness, but Doddie would not want us moping about. He would want us getting on with it – fundraising and trying to find a cure – and that’s what we will do.”
Rob said: “It’s a huge legacy and it’s for nothing if it doesn’t continue. It falls upon us that are left to carry the flame for Doddie and carry on his determination to find breakthroughs in the science and treatment of MND. Doddie may be gone but he is still leading us and driving us onwards.”
The last time Rob saw Doddie was when Doddie made a flying visit to the Island of Coll around two months ago.
Rob said: “When you play rugby with someone you are bound together by being part of a team. Doddie was a country man, a bit like myself and we shared the same kind of humour. We just hit it off.
“He came up for a visit and it was great to see him. We had lunch at The Coll Hotel and went on a distillery tour at Ardnamurchan. He needed things like that to look forward to. That was the last time I saw him.”
When Doddie passed away tributes poured in from all around the world and Rob wasn’t surprised by the amount of love felt for Doddie.
Rob said: “He was an extremely warm character, wonderfully friendly, with the perfect blend of humour and compassion. He was just a really good people person, with a really attractive personality that people loved, and he was very giving of his time.
“There was a lot that happened behind the scenes. Doddie was introduced to people who had just been diagnosed with MND. He was able to give them guidance and he in turn got guidance from other people.”
Rob has been putting plans in place for Doddie Aid. The mass participation event starts on January 1, 2023, and anyone can sign up and set their own challenge and fundraising goals.
Doddie Aid also includes a cycling event where hundreds of cyclists will leave from Cardiff’s Millenium Stadium on Thursday February 9, to arrive at Murrayfield in Edinburgh for the Scotland v Wales Six Nations match on Saturday February 11. The 555 mile cycle will be a continuous ride throughout the 48 hours.
And next year’s event is set to be even more emotional.
Rob said: “Everything will be a lot more poignant. It’s emotional anyway – when you get tired and you’ve been at it for a day and half, you’re running out of energy, haven’t eaten properly or slept and then the amazing welcomes at some of the rugby clubs.
“This year there’s even more determination, to make it even bigger and channel that love for Doddie now that he has gone.
“I’ve set myself a target of having 50,000 people signed up to Doddie Aid and to raise £2m for MND research.”
As well as organising Doddie Aid, Rob helps to keep his local Coll community safe as a volunteer on call firefighter – a role he’s held for nearly 20 years.
His colleagues from the Scottish Fire and Rescue Service (SFRS) have rallied to submit a cycling team for Doddie Aid. Rob’s fellow volunteer on call firefighters from the island’s fire station will be joining a 13-strong team from the SFRS East and West Dunbartonshire and Argyll and Bute area.
Rob will be cycling as part of a British and Irish Rugby Lions Team.
He said: “I’m wishing luck to the SFRS team. I know they’ve been in training. Winter cycling in February might sound like a stupid thing to do but it’s overcoming these challenges working as a team – it will be a very uplifting experience.”
Area Commander Joe McKay is SFRS Local Senior Officer for East and West Dunbartonshire, Argyll and Bute. He said: “We’ve seen first-hand the huge amount of effort it takes to organise Doddie Aid and we’re delighted to support Rob’s determination and importantly to support Doddie’s mission to raise money to help find a cure for MND.”
Jill Douglas, CEO, My Name’5 Doddie Foundation, said: “We’re incredibly appreciative of all that the SFRS do, and to have them joining the Doddie Cup 555 ride is great!
“The ride is a gruelling challenge, but made easier knowing that each push of a pedal and mile covered takes us closer towards finding a cure to motor neuron disease.”
And that’s Rob’s goal – to keep fundraising to try to help others.
He said: “This is a call to arms. Please get involved, download the app, sign up, encourage people to join and spread the word.
“We have come a long way, but the journey needs to be pushed on. Doddie was defined not by what he did in his glory days on the rugby field, but by how he coped with his ultimate challenge, how he attacked it and the momentum he created to find solutions for MND.
“There’s lots of people out there with MND. Many of them don’t have the platform that Doddie had but he had that platform, and he used it. He had an amazing energy and determination to find a solution to this disease and to help others. He’ll keep pushing us on even though he isn’t here.
“We’ll keep funding research and hopefully there will be a breakthrough that will really make a difference for sufferers of MND. It’s what Doddie would have wanted.”
A service celebrating the life of rugby legend Doddie Weir is due to be held in the Scottish Borders today.
The former Scotland international died last month at the age of 52, six years after being diagnosed with motor neurone disease (MND).
The event takes place at Melrose Parish Church at 13:00 with anyone attending encouraged to wear tartan – a request made by Doddie Weir himself.
Alice Gully and Kate Mactaggart, business women and mothers, both aged 46 from the Scottish Borders have been selected out of thousands of applicants to participate in the August 2022 Mongol Derby race.
Gully and Mactaggart (AKA Doddie’5 Dazzlers) are racing to raise £30,000 in aid of My Name’5 Doddie Foundation, set up by fellow Scot, Doddie Weir OBE. The Foundation is committed to helping improve the lives of those affected by Motor Neuron Disease.
With just 40 selected jockeys riding, this gruelling 1000km course takes up to 10 days and it is regarded as the longest and toughest horse race in the world. It is genuinely dangerous with a high chance of injury and typically only half the jockeys complete the race.
This is the greatest equine adventure in the world – high passes, huge valleys, wooded hills, river crossings, wetland, dunes and of course open steppe.
The jockeys live with the herders at night, eat local food (a diet of mutton and offal) and rely on their wits and skill during the day. Weather extremes are expected in the Mongol Derby with temperatures ranging from freezing to 38⁰C and anything from horizontal rain to scorching sun.
To prepare for this epic race, Alice and Kate are both currently undergoing an intense training and exercise regime, which includes cycling 100 miles and rowing 21,000 meters per week, as well as a weekly 5k run, 20,000 steps per day and over 7hrs in the saddle each week.
A huge commitment to undertake in addition to their businesses and family life, with 6 children between them!
In 1224 Genghis Khan set up the world’s first long-distance horse messenger system, which connected half of the planet.
Using a massive network of horse stations (‘morin urtuus’ in Mongolian) his hardy messengers could gallop from Kharkhorin to the Caspian Sea in a number of days.
Nearly 800 years later, for 10 days each August, the Mongol Derby recreates this legendary system, utilising a network of urtuus at 40km intervals along the entire 1000km course.
Lifelong Heart of Midlothian supporter, Stevie Morris, is speaking out about his diagnosis of motor neurone disease (MND) to raise awareness, in support of the Club’s partnership with MND Scotland.
Thanks to an innovative sponsorship deal with Dell Technologies, MND Scotland’s logo is taking pride of place on the front of the Hearts home kit for the 2021/22 season. To help raise more awareness, Stevie, from Mid Calder, is sharing his experience of living with MND and what the partnership means to him and his family.
Before being diagnosed with MND, the Tynecastle Park season ticket holder used to love playing sport, including football, walking football and golf multiple times a week.
He said: “I used to live a very active life before my diagnosis, and it has been really tough having my ability to play sport gradually fade away to the point where I just can’t do it anymore.
“I’m someone who likes to take care of their garden, but this past gardening season I was even starting to find mowing the lawn to be too much.”
Stevie, who is married to Mary (61) and dad to Craig (37), used to attend every Hearts game, both home and away, but due to his worsening condition, is sadly unable to travel to watch away games anymore.
“Hearts has always been a huge part of my life. It’s really important to me and I used to love travelling to the games on the Livingston Hearts supporter’s bus, but I can’t do that now. The walk to the ground from the bus is just too far. Even going to home games, I have to get dropped off right at the entrance and am in the process of moving my season ticket seat, so I don’t have to walk as far.
“Right now, I am still able to get down to the pub on a Sunday to watch other TV games, something I’m still really glad I can do.”
Stevie first suspected something was wrong during a round of golf, when he experienced a freezing cold sensation in his foot, something which seemed even more unusual given the warm weather on the day.
He said: “From visiting my doctor to being diagnosed took around nine months in total. There was a lot of testing involved and other things that had to be ruled out. At first, I thought it might have been a trapped nerve but sadly it was more serious than that.”
Stevie was diagnosed with MND in February 2021 and less than a year on is having difficulty getting up and down stairs, as well as relying on a breathing machine at night.
“Being diagnosed with MND was devastating obviously. It just floored us and the whole family went through a period of complete disbelief. Although I found it very difficult to tell my family and friends, the hardest part was definitely having to tell my dad.
“For the past three games, I’ve taken my dad for hospitality at Hearts, which has been an amazing experience for us both and something very special we could do together.”
Stevie and his son Craig are extremely happy about the partnership between Hearts and MND Scotland and have both got the strip with the charity logo.
He continued: “MND is a horrible disease. For my team to be involved in such a positive and direct way is tremendous. I hope the money raised from the partnership will allow MND Scotland to continue helping people in my situation. The support and services they provided me with really helped to take a load off my family – they are magnificent.
“I hope the message gets through that MND can affect anyone. I’m a fan, who is there every week. I’m your midweek, go to Inverness or Ross County fan. I’m a fan that will have a sing a long on the supporter’s bus, and a beer before and after the match. Hearts are my team. My wish is that no one else misses out on future games because of MND.”
MND Scotland’s Head of Fundraising, Iain McWhirter, said:“Our partnership with Hearts has been amazing so far, and both the club and its supporters have played an enormous role in our effort to raise vital awareness and funding, to help change the lives of people living with MND today.
“I want to thank Stevie for bravely speaking out about his story and sharing his experience with us.”
To help people like Stevie, and to join MND Scotland’s search for a cure, please donate today.
Gregor Miller, a Scottish Ambulance Service technician based in Glenrothes, has organised a charity run from Stirling Castle to Tynecastle to raise awareness of Motor Neuron Disease (MND) after losing his dad, Campbell, to the disease.
Gregor has a host of celebrities backing his event, including Scott Hastings, Grant Stott, Gary Naysmith, Kevin Kyle, and Michael Stewart, among a host of others. You can see the messages at Castle Crusade Run
So far, Gregor has raised £7,631.32 of his £10,000 target. Visit bit.ly/2PyoRyJ to help the cause, with money going towards My Name’5 Doddie foundation, MND Scotland and the Euan Macdonald Centre.
Gregor said: “The support I have received is incredible which can be seen on our Facebook page.
“I’m looking forward to running with the different celebrities at the various check points to pull me on as running alone is very lonely and the strength to keep you going mentally is enormous. I keep remembering why I’m doing the challenge and the lives that will be helped by the research funding raised.
“Please can I ask as many people to follow and share the Castle Crusade Run on all social media platforms and most of all donate to support The Doddie Weir Foundation, The Euan MacDonald Centre and MND Scotland.”
Joining the Crusade for the run are Ryan Stevenson (Hearts FC), Colin Cameron (Hearts & Scotland), Simon Ramsden (Motherwell), Tam McManus (Hibernian), Willie Conquer (Referee) and Scott Hastings (Watsonians & Scotland Rugby Union).
Trinity Academy pupil kicks off 2021 facing 1042 miles on the road
#Bens100days
My name is Ben Liddall and I am 17 years old. I am attempting to run a total of 1042 miles in the first 100 days of 2021 for MND Scotland and the My Names Doddie foundation.
On July 15th, 2020 I was involved in a cycling accident and as a result, received a serious concussion. It was made clear to me that it could have gone a lot worse and I got off incredibly lucky.
As part of my recovery, I was confined to bed for 2 weeks, with no technology, no exercise, and no strain. This gave me a lot of time to think without distraction and I decided that within 4 weeks of my recovery I would run my first marathon. I had never run long distance before, my main form of exercise was rugby, but after intense training, on August 25th, in amongst a storm, I ran my first marathon.
I then realised this was something I was passionate about and that I enjoyed, but also something I realised I could use to help others. I decided to set myself a new goal – run 1042 miles in the first 100 days of 2021 in support of the My Names Doddie foundation and MND Scotland.
Why 1042 miles? Well, one of my main passions is rugby and I would be running this distance around the time of the 6 Nations and also in support of Doddie so I decided to run the distance of Murrayfield, to the Aviva in Dublin, to the Principality in Wales, to Twickenham in England, and back to Murrayfield which is … you guessed it, 1042 miles!
This means I will be running around 10.42 miles every day, sometimes more sometimes less, and finishing on April 10th, 2021.
I would appreciate any donation no matter how big or small to help the ongoing battle against MND.
Motor Neurone Disease (MND) is the general name given to a group of illnesses which affect the body’s motor nerves – these are called motor neurones. MND is a progressive, incurable illness.
In a healthy person, the motor neurones carry signals from the brain directly to the muscles. However, MND stops signals from the brain reaching the muscles. Therefore, over time muscles weaken and eventually stop working.
It is important to remember that not everyone is affected by MND in the same ways. Every case of MND takes its own course, but the disease may cause someone to lose the ability to walk, talk, eat, drink or breathe unaided.
Some people may also experience changes in their behaviour, personality and the way they think. This may affect their ability to plan tasks on a daily basis and how they communicate with others. A small number of people may experience severe changes which are associated with a type of Dementia, called Frontotemporal Dementia (FTD).
Any money donated to either MND Scotland, or My Names Doddie will be used to help people affected by MND in Scotland, and will help fund practical, financial, and emotional services throughout Scotland, including; one-to-one counselling, benefits advice, complementary therapy, a loan of our communications equipment, support groups and more. You’ll also be funding vital research, in Scotland, to help take us a step closer to finding a cure for this devastating illness.
A groundbreaking clinical trial for motor neurone disease (MND) begins this week at the Queen Elizabeth University Hospital (QEUH) in Glasgow.
The pioneering trial MND-SMART is testing multiple drugs, rather than a single treatment at a time, and so aims to speed up the time it takes to find medicines that can slow, stop, or reverse the progression of MND.
The trial, based at the QEUH, will welcome participants from across the NHS Greater Glasgow and Clyde region which cares for the largest number of people living with MND.
Motor neurone disease (MND), also known as amyotrophic lateral sclerosis or ALS, is a progressive condition that causes muscle to waste away. It occurs when nerve cells called motor neurons, which send messages from the brain and spinal cord to the body’s muscles, stop working properly.
More than 1,500 people are diagnosed with MND in the UK each year. There is no cure and half of people die within two years of diagnosis.
MND-SMART is a pioneering clinical trial in its reach and design and is recruiting hundreds of people living with MND across the UK to take part in tests of potential treatments. Unlike typical clinical trials which test a single treatment at a time, MND-SMART is testing multiple drugs and so aims to speed up the time it takes to find medicines that can slow, stop, or reverse the progression of, MND.
Dr George Gorrie, Consultant Neurologist and Lead for Motor Neurone Disease Greater Glasgow and Clyde, said: “The MND-SMART trial launching in Glasgow is some good news at a time when there isn’t much around.
“Ensuring the safety of people taking part in MND-SMART is the research team’s highest priority and we will follow all government requirements relating to COVID-19 and research.
“The pandemic and ensuring practices are COVID-19 compliant will impact how quickly people can be recruited to the trial but we are delighted to be able to start seeing participants.”
Those who have already registered online interest in the trial and who live in the Greater Glasgow and Clyde area will be contacted by the Glasgow trial team over the coming months to discuss taking part.
The trial was first announced in January and centres are due to open across the UK. Glasgow is the third such centre after Edinburgh and Dundee.
The trial has been developed by people with MND and clinical trial experts from across the UK. The study is led by the Euan MacDonald Centre for MND Research at the University of Edinburgh.
Funding for the trial has been provided by the Euan MacDonald Centre, substantial private donations, MND Scotland and the My Name’5 Doddie Foundation.
For further information about the trial please visit www.MND-SMART.org
MND Scotland chairman Lawrence Cowan has been shortlisted for an SCVO Scottish Charity Award, which pays tribute to the inspiring individuals who help transform our society every day.
This year has been monumental in our fightback against MND – January saw the launch of the UK’s biggest MND drugs trial, thanks to the many fundraisers, researchers and leaders in our community.
Lawrence is in the running for the ‘Charity Champion’ award because of everything he has done both personally and professionally in the fightback against MND.
Lawrence’s best friend Gordon Aikman died of MND when he was just 31 years old. Gordon spent the time he had left campaigning for the rights of people affected by MND and fundraising to find a cure. Before Gordon died, Lawrence made a promise to do everything he could to help bring drugs trials to Scotland. This year that promise became a reality.
Personally, Lawrence has helped raise over £700,000 for cutting-edge research, and during his leadership as MND Scotland’s chairman, the charity achieved its highest income to date and invested £1.5 million into the pioneering drugs trial MND-SMART – the largest investment into research the charity has ever made.
Through this nomination, Lawrence is now being recognised for his contributions to the cause and is following in the footsteps of his late friend, who won this award in 2016.
Lawrence said:“This year we’ve made an historic leap forward in our fightback against MND. A few years ago drug trials for people with MND in Scotland were just a dream. Now almost everyone will be able to get on a drug trial in Scotland.
“We’re now at the cutting edge of treatment trials in the UK. We got here through people moving mountains for those they love – and those they’ve lost. This nomination is for everyone in our MND community who have made history and I hope I can do them proud on the night.”
Lawrence is joined by MND charities My Name’5 Doddie Foundation and Euan’s Guide, who have also been shortlisted for awards.
The My Name’5 Doddie Foundation, which has been nominated for Charity of the Year, was founded by rugby legend Doddie Weir OBE. Since his diagnosis in 2016 he has spent his time raising awareness of the disease by sharing his story and raising funds to find a cure. The foundation has also donated £280,000 to MND Scotland’s grants programme, to help families in Scotland who are struggling financially because of MND.
Euan MacDonald, also shortlisted in the Charity Champion category, was diagnosed with MND in 2003 and driven to help find a cure, he established the Euan MacDonald Centre for MND Research. This centre at the University of Edinburgh is home to the clinical drugs trial MND Scotland helped fund. As a powerchair user, Euan also founded the charity Euan’s Guide, a disabled access review website which gives disabled people the information they need to visit places with confidence.
Anna Fowlie, Chief Executive of SCVO, said: “Much of the work celebrated this year predates the pandemic. All aspects of our lives have been disrupted in 2020. Our communities and the charities, voluntary groups and social enterprises they rely on have been under enormous pressure.
“Scotland’s voluntary sector has never been more needed and will be essential to Scotland’s recovery. At SCVO we know that fantastic work is going on all the time and we are delighted to celebrate these achievements and successes through the Scottish Charity Awards.
“This year’s shortlist of 45 finalists showcases just how diverse our voluntary sector is, and highlights the fantastic work that has been going on across the country since the last Awards until March this year.
“The Awards are a great way of celebrating and recognising the people and organisations who make our voluntary sector a crucial part of every part of life in Scotland. Our finalists are fantastic and I would encourage everyone to support their favourite by voting in the People’s Choice Award.”
Cast your vote!
Lawrence, Euan and the My Name’5 Doddie Foundation are also in with a chance of winning the People’s Choice Award which is decided by a public vote.
Greta Auld (73), from Pencaitland near Edinburgh, was diagnosed with MND in March 2019. Now she’s sharing her experience of MND and life in lockdown to help raise awareness of the terminal illness.
The retired police secretary, and grandmother of five, has always been a constant pillar of the community. A widow with two children at the age of just 29 years-old, Greta was forced to be fiercely independent her whole life.
While wanting to keep her independence for as long as possible, family members and local village friends have stepped up to support her when needed. Since her diagnosis of MND, Greta has kept a positive outlook and cannot wait for ‘shielding’ restrictions to lift so she can get back out in the community and live life to the fullest.
Greta said, “Before lockdown I was going out about four times a week. I have a wee electric scooter, but I haven’t been out on it for months! I was still driving my grandkids to their swimming and doing wheelchair bowling at the local women’s club, where I am also the secretary.
“I helped run the Scouts for over 20 years and was involved in a local lunch club for older people – although now the 85-year-olds help me off the bus,” she joked.
“I’ve always been heavily involved in the community and have loads of friends through this. So not being able to get out of the house these past few months has been hard. It’s difficult not getting to see the grandkids as much but they are getting down to visit me now. I just can’t wait to get around the village again and see what’s been going on the past three months.”
Greta added, “Thank goodness for my wee westie Maisie, she has been such great company during the last few years. As I became more disabled and not able to take her on walks, a really good friend now takes her every morning during the week, and a neighbour’s daughters take her at weekends.
“I am so lucky to live in a village and be well supported by everyone. She is such a friendly wee dog; she loves everyone and all my carers spoil her.”
Greta has also found MND Scotland’s Video Support Group particularly helpful, enabling her to stay connected to others affected by MND during the pandemic.
“When they were running, I went to the MND Scotland Support Group in Edinburgh. I loved it. That’s just the kind of person I am. I want to get involved and meet people – that helps me. I know other people don’t want to go to things like that, but I’ve found it very helpful going to meetings. It affects us all differently and yet the same.
“We’ve moved online to a video call every week. They are so good and very informative. Everyone is really upbeat which makes a difference. We’re a happy crowd – we’re not sitting in doom and gloom. All you can do is keep a good attitude and try to stay as positive as you can.”
Diagnosed with MND in 2019, Greta was initially thought to have had a silent stroke, first realising something was wrong in early 2017.
“I noticed the left-hand side of my body was getting really weak. I remember visiting my friend in Canada and was in her swimming pool, but I ended up just swimming in circles because my left leg wouldn’t work! I looked awful silly, but you have to laugh at these things as well.
“I then had a number of trips and falls so decided to go and get checked out. My family were very shocked when we were told it had been a stroke. However, as time went on, my symptoms were getting worse instead of better, so I went back and was referred to a neurologist.
“I wasn’t all that surprised to be honest. My hands had been shaking for a long time so I thought it might be Parkinson’s or something similar, but my family were absolutely gutted when I told them. They had just gotten their heads around it being a stroke and were now being told it was MND, which was an even bigger shock to them.
“I was quite upbeat when I told my children, George and his wife Susan, and Lynda and her husband Derek. It took a while for it all to sink in. I think my daughter in particular found it really tough. She was just devastated. I think it must be difficult for them to see their parent going through this.
“It’s only now that it’s really sinking in for me, as things start becoming more and more difficult. I’m getting slower and weaker but the way I see it you just have to battle on and keep going. I try to be as positive as I can and see the fun in life wherever I can.”
Since the beginning of lockdown Greta has noticed a change in her symptoms, but is continuing to get the support she needs: “Staying indoors definitely hasn’t helped my mobility. I have noticed my symptoms progressing. I used to get massage therapy and physiotherapy until they stopped because of coronavirus.
“I think that’s slowed me up too. I’m just not getting the same amount of exercise. Even going down the steps at my front door was good movement which I can’t myself anymore, so we are trying to get something sorted to help me get down more easily, like a ramp.
“I currently need help to get out of the house, so it would make a big difference to be able to get down the steps by myself. My world would open up again. I’ve been in this house for 50 years and I don’t want to have to move – this is where my family memories are.
“As I’m on the government’s shielding list I’ve been getting good support and am using the online shopping delivery slots which has been a huge help. I’m very lucky. I’m used to being independent so even though friends and family help a lot I don’t want to bother too many people.
“I now have a cleaner and a gardener, and I have carers coming in in the morning, at teatime and in the evening – I can always have a good laugh with my carers as they are from the local village too. The most important thing for me is trying to keep my independence for as long as possible.”
Craig Stockton, MND Scotland’s Chief Executive, “I’d like to thank Greta for bravely sharing her story, especially during these uncertain times.
“For people living with MND, time with loved ones is precious. Social-isolation measures, while essential, have placed huge restrictions on the care and support many rely on every single day. Even basic companionship, like having a friend or loved one pop round to say hello.
“That’s why we launched our new services hub, to help us stay connected to families in Scotland, so no one has to go through MND alone. ‘MND Scotland Connected’ at its core provides one-to-one phone support, video support groups and emergency financial grants.
