Tag: MND

Gran with MND speaks out about life in lockdown

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.

“People with MND need us more than ever, so if you’d like to help support people affected by MND you can donate here www.mndscotland.org.uk/emergency-appeal.”

Holly’s Month of Miles for MND

Holly Archibald, a 32-year-old trainee solicitor from Edinburgh, is running 2.6 miles every day for a month in memory of her uncle who died of Motor Neurone Disease (MND).

The 2.6 Challenge was launched on 26 April, the day the London Marathon was supposed to take place. The challenge called for people across the UK to pick their own ‘2.6 Challenge’ in support of a charity close to their heart.

While adjusting to her new normal in lockdown, Holly decided to take on the challenge by running at least 2.6 miles a day for 31 days, to raise funds for charity MND Scotland after losing her uncle to the disease in 2016.

MND is a rapidly progressing terminal illness, which can cause someone to lose the ability to walk, talk, eat, drink or breathe unaided. The average life expectancy from diagnosis is just 18 months.

Holly said, “We lost my uncle, Ian, three years ago to MND when he was 59. It was awful to see this disease ruin him, and our family. The disease truly frightens me, and I think the support and research MND Scotland provides is vital to fight it. Ian lives on in our memories but also within these challenges.

“I cycled from London to Paris in 2017 to raise funds for MND Scotland and I intend to keep doing what I can to support them. I was emailed about the challenge following the cancellation of the London Marathon (not that I was planning to do that!). I only really started running 5 weeks ago, when we went into lockdown, so I thought this would be sufficiently difficult to encourage people to sponsor me.

“I am very much trying to adapt to the new norm. I certainly have more time on my hands since lockdown, so I am running at least 2.6 (socially distanced) miles per day, from the 26th of April to the 26th of May. Or at least jog. Maybe, towards the end, walk! By the end I’ll have completed at least 80.6 miles. Uncle Ian lives on in our memories but also within these challenges.

“People often see fundraising as needing to run a marathon, do a skydive or something crazy but what this period of time has shown us is that actually you don’t have to do these big grand things. You can do something small like run or walk every day. As long as it challenges you personally. I think that’s one of the positive things coming from this.

“I’d encourage everyone to get involved and do something. Even if you only raise £30, that’s money that wouldn’t have been therefore, so just go for it! Any little really does help and raising awareness is just as important.

“I had a target of £260 given it’s the 2.6 Challenge and have already smashed it, raising £345 so far. This is great but more would be even better. I hope that the cash raised will help MND sufferers and family members, especially during this pandemic.”

Iain McWhirter, MND Scotland’s head of fundraising, said “With many events being cancelled and postponed this year, the 2.6 Challenge gives people something fun and positive to do at home, while raising money for many worthy causes.

“During this uncertain time, we are determined to make sure no one goes through MND alone while the country is on lockdown. That’s why we’ve launched a host of new services to help us stay connected to families affected by MND in Scotland, including video support groups, one-to-one phone calls and emergency grants for anyone who is struggling financially as a result of Covid-19.

“We’re very grateful to supporters like Holly, who are able to use this time at home to support MND Scotland.” 

To support Holly’s miles for MND you can donate online at https://www.justgiving.com/fundraising/my-2-6-challenge-eaf7ee74-490c-4570-9661-db9ab22d8fba or sign up to do your very own 2.6 Challenge for MND Scotland at www.mndscotland.org.uk/26-challenge.

Just the ticket!

ScotRail All-Aboard for MND Scotland 

The ScotRail Alliance has announced it will be continuing its journey to a cure for Motor Neurone Disease (MND), by supporting charity MND Scotland for another two years. 

The partnership, which was set to end in March 2020, has been a huge success, with staff and customers raising £255,000 since 2017, smashing their target of £150,000. 

Going above and beyond for the past three years, funds have been raised through staff fundraising, customer donations and gifts in kind, such as advertising on trains and in stations. 

MND is a rapidly progressing terminal illness, which stops signals from the brain reaching the muscles. This may cause someone to lose the ability to walk, talk, eat, drink or breathe unaided. 

MND Scotland provides vital support to families affected by MND when they need it the most, and fund ground-breaking research into a cure. 

Last month the charity announced a £1.5million investment into the UK’s biggest MND drug trial. Funds raised through the ScotRail Alliance – a partnership between ScotRail and Network Rail Scotland have contributed to this monumental step towards finding a cure for the disease and giving people living with MND hope. 

Alex Hynes, Managing Director of Scotland’s Railway, said: “I am absolutely delighted that we will be continuing our work with MND Scotland over the next two years.

“MND Scotland is an incredible charity doing extraordinary work right across our country, and the recent drug trials show just how valuable our fundraising efforts can be.

 “I’m really proud of our people and customers who have helped to raise more than £250,000 for this great cause so far, and I’m looking forward to raising even more over the next two years.”

 Iain McWhirter, MND Scotland’s Head of Fundraising, said: “We are delighted that the ScotRail Alliance are going to be joining us on our journey to a cure for another two years. 

“We have been blown away by the support we have received, from staff jumping out planes and organising coffee mornings, to customers donating across the country, and advertising which has helped raise awareness with commuters throughout Scotland. 

“Thanks to the generosity of supporters like this we have been able to fund the most comprehensive MND drug trial in a generation. This trial will be open to almost every person with MND in Scotland and we hope will lead to finding effective treatments and ultimately a cure for MND.”

Genius Brewing donate £10,000 to Doddie charity

Genius Brewing have presented Doddie Weir OBE with £10,000 for the My Name5 Doddie Foundation at the Scottish National Portrait Gallery in Edinburgh.

Genius Brewing are official fundraising partners with the My Name5 Doddie Foundation. The company’s #5p4Dodde pledge donates 5p from every can of their Gen!us Craft Lager.

Genius Brewing’s Jason Clarke said: “Doddie has transformed the profile of MND and raised over £5m to help current and future sufferers. Genius Brewing is proud to support such an inspiring cause.”  

Doddie’s Big Boost for MND

Rugby legend Doddie Weir continues support for families living with motor neurone disease, with additional funding to charities MND Scotland and the MND Association of England, Wales and Northern Ireland.

More than 1,000 people affected by motor neurone disease (MND) have been directly helped by grants funded by the Foundation set up by rugby legend Doddie Weir, who himself has the terminal illness.

That support is set to continue with the My Name’5 Doddie Foundation pledging another year of support to MND Scotland and MND Association’s care grants programmes.

The announcement marks the start of a third year of support from the Foundation set up by the former British and Irish Lion and Scottish international. While much of the money raised by the Foundation is directed into research, a significant amount is pledged to directly help people who are living with the disease via the MND Association and MND Scotland.

Doddie’s Foundation has upped its donation to MND Scotland by £100,000 taking the total contribution to £250,000. The Foundation has also donated £400,000 in total to the MND Association.

People affected by MND in Scotland can apply to MND Scotland for care grants to help with the cost of home adaptations – for instance ramps and stairlifts, equipment such as specialist bathroom facilities and riser recliner chairs, and for respite activities for carers and families. The equivalent is available from the MND Association for those living in England, Wales and Northern Ireland.

MND Scotland helped 250 people affected by MND in 2019, through the charity’s grants programme, awarding almost £300,000 to families in Scotland. The MND Association’s care grants programme totals more than £1million annually for the rest of UK and, in 2019, helped 1,425 people.

Doddie said: “We are delighted to know that we have been able to help so many families over the last two years. There are many challenges to living with MND and it has been my aim to help people in a similar situation to myself live as full a life as possible.

“The grant schemes are vital and we are only able to help in this way thanks to the amazing support we receive from our fundraisers and friends every day.” 

Craig Stockton, MND Scotland’s chief executive, said: “The support from the My Name’5 Doddie Foundation is helping us provide vital support to even more families across the country, when they need it the most.

“I’d like to thank Doddie and his foundation for their generosity, and commitment to improving the lives of those affected. Through our grants programme we are able to remove some of the additional stress that financial worries can cause, and allow people to concentrate on living their lives.”

The MND Association’s chief executive Sally Light said: “We are so grateful for Doddie’s continuing support of the MND Association and his determination to make life better for people like himself who have received this devastating diagnosis.

“The generous donations from the Foundation and continued partnership with us will make a real difference to those living with MND as well as their carers and loved ones.” 

Jill Douglas is the chief executive of My Name’5 Doddie Foundation. She said: “One of our key aims is to give support to families living with MND and we recognise that the MND Association and MND Scotland have the necessary expertise and experience to administer these vital grants on our behalf.

“They are successful partnerships and we very much appreciate the relationships and how they enable us to fulfil this important goal.” 

For more information about MND and the grants available visit www.mndassociation.org/grants or www.mndscotland.org.uk/grants.

Doddie Weir to receive Helen Rollason Award at BBC Sports Personality of the Year

Scottish rugby legend Doddie Weir OBE is set to be honoured with the Helen Rollason award at tonight’s BBC Sports Personality of the Year 2019.

Continue reading Doddie Weir to receive Helen Rollason Award at BBC Sports Personality of the Year

Support for automatic access to Blue Badge Scheme for people with MND

Lothian MSP Miles Briggs has given his support to the campaign for people with Motor Neurone Disease (MND) to receive automatic access to the Blue Badge scheme. Continue reading Support for automatic access to Blue Badge Scheme for people with MND

First MND drug trial in twenty years comes to Scotland

MND Scotland has announced the launch of the first Motor Neurone Disease (MND) clinical drug trial in Scotland, in over 20 years. MND Scotland, who is part-funding the study in Glasgow, is committing over £1.5 million into MND drug trials in Scotland, with MIROCALS being the first investment.   Continue reading First MND drug trial in twenty years comes to Scotland

Lazarowicz: Fast-track benefits for terminally ill

‘long delays risk leaving terminally ill people destitute in the last months of their life’ – Mark Lazarowicz MP

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Mark Lazarowicz MP is backing Gordon Aikman’s MND campaign and has called on the Government to fast track benefits for people like Gordon with terminal conditions.

Speaking in a debate in Parliament yesterday, the Labour MP for Edinburgh North and Leith called on the Government to fast track benefit claims from people with terminal conditions like Motor Neurone Disease and intervened to tell the Minister that the prolonged delays, in some cases of up to 18 months, could mean the outcome comes too late for some people with limited life expectancy.

He said later: “I strongly support Gordon Aikman’s campaign to fast track benefit claims from people with terminal conditions like MND: people are waiting 6 months and in some cases 3 times that just to have an assessment.

“Claims can be fast tracked where someone is not expected to live longer than 6 months but where does that leave someone with MND where the average life expectancy after diagnosis is 14 months?

“The Government should offer financial support to people suffering as a result of the delays caused by its own incompetence but first and foremost it should make sure that their claims are fast tracked.

“The Minister’s response in the debate was not acceptable: it’s shameful that people who are so ill should spend the last months or year of their life in financial hardship having to fight so hard for the benefits they are entitled to.”

He was speaking in a debate on the introduction of the new Personal Independence Payment (PIP), the disability benefit that is replacing Disability Living Allowance (DLA) which is designed to help seriously ill or disabled people with the extra costs their condition entails.

It was announced on Thursday that responsibility for PIP is to be devolved in future and Mark has called for the roll-out of the new benefit to existing DLA claimants to be stopped until it is because of the huge backlog of assessments.

That was also the conclusion of the House of Commons Work and Pensions Select Committee: it reported last March that even where someone did have their claim fast tracked because they were not expected to live more than 6 months, the time taken to process their claim had increased from typically 8 days with DLA to 8 weeks with PIP.

Mark Lazarowicz says the Government has moved the goalposts: its original target was for the whole process from claim to decision to be completed within 16 weeks, now it is that all assessments should be completed within that time and it is even failing that target.

gordon aikman
Gordon Aikman’s story

I’m dying. And fast.

That – in short – was what my doctor told me just a few weeks ago when I was diagnosed with Motor Neurone Disease.

It’s not the news you expect when you are 29 years old.

MND is a rare, progressive and debilitating disease that attacks the brain and spinal cord. It leads to weakness and muscle wasting and will affect how I walk, talk, eat, drink and breathe.

There is no cure. 

That’s why I am doing all I can to raise money for MND Scotland – a great charity that funds and promotes research into the disease and provides support to people affected by Motor Neurone Disease.

It’ll be too late for me, but we must find a cure for the next generation.

With your help I can turn a negative into a positive. Please dig deep and donate what you can today. 

100% of the money you donate will be spent on trying to find a cure.

Thank you

Gordon  

P.S. Please visit www.gordonsfightback.com to tell your your MP and MSPs to back my campaign to double MND research funding.

To date Gordon has raised £216,683.88 of his £250,000.00 target. 3,690 individual donations have been made.

https://www.justgiving.com/gordonaikman/