Edinburgh man to swim a double-marathon for epilepsy charity

In the weeks leading up to Purple Day—the largest fundraising event for epilepsy-related causes—on 26 March, Edinburgh resident Michael Sturrock has set out to swim the equivalent distance from his home in Leith to the Epilepsy Scotland office in Glasgow.

The 28-year-old, who has epilepsy himself, aims to raise £2,000 for the charity. To reach his goal, he will swim just over 3km—or 122 lengths—every day for 28 days.

Speaking about his experience of epilepsy, Michael said: “I had my first seizure when I was 18. I had just arrived at a friend’s house and bent down to untie my shoes. I woke up several minutes later, unaware of who I was, where I was, who those around me were, what had happened or what was going to happen to me.

“I had just had a ‘grand mal’ seizure, which is the kind most will be familiar with – someone falling unconscious and fitting on the floor.  Aside from the danger and physical toll of the fitting period, the subsequent confusion is an experience in which you feel simultaneously trapped in your body and disconnected from reality. It is terrifying for me and those who have witnessed the seizure.

“Having epilepsy not only comes with the physical parts of the condition but impacts the mental health of those with epilepsy and their friends and family. Watching someone having a seizure is a horrifying experience. Studies show an increased prevalence of PTSD in family members and carers of those with epilepsy. Rates of depression and anxiety are higher in people living with epilepsy. Indeed, anxiety is something that has affected me significantly in the years I have lived with epilepsy.

“Over the last decade, I have been on a medical journey to control my epilepsy. After years of trying different and varying quantities of seizure-control drugs and managing their side effects, I have now been seizure-free for 18 months. It’s a huge relief both for me and my husband, who has had to witness and care for me during seizures over the years.

“I’ve chosen a swimming challenge to highlight the fact that there are lots of everyday things that many people with epilepsy can’t or choose not to do because of the risk seizures would pose. Some with uncontrolled seizures would choose not to have a bath, let alone swim in a pool.

“Whether controlled or not, epilepsy is ever-present in the daily lives of those with the condition and those around them. With support from charities like Epilepsy Scotland, however, that need not be a bad thing. The support and sense of community the charity provides not only helps mitigate the effects of epilepsy for many but enriches and becomes a central part of their lives.

“I have the privilege of being a trustee of Epilepsy Scotland and I see first-hand the incredible work they do to support people with epilepsy and their loved ones. It is a truly brilliant charity and deserves every single penny it raises.

“I’m incredibly grateful for the support received. I have completed 5 swims and already raised over 60% of my £2000 goal. If I can raise that number this week, I’ll up my target amount by £1000 – or maybe more. Any donations are very welcome.”

Commenting on his progress, Michael said: “I’m not a bad swimmer so have been largely okay in the pool so far, though my arms were pretty tired on the third day and my pace dropped a fair bit.

“But coping with the monotony is almost the bigger challenge – I started craving chilli heatwave Doritos halfway through yesterday’s swim and couldn’t think of much else for the remaining time – I’ll have to make sure I’m better fed for my next swim!”

To donate, visit www.justgiving.com/page/michael-sturrock-purple-swim

Lothian MSP supports new Epilepsy and Mental Health Survey

Scottish Conservative & Unionist MSP for Lothian, Miles Briggs, encourages estimated 8108 constituents living with epilepsy to make their voices heard

MILES Briggs is calling on people living with epilepsy in Lothian and across the local authority to take part in a new national survey to understand the affect epilepsy can have on mental health, launched this week by Epilepsy Scotland. 

Epilepsy is defined as the tendency to have repeated seizures which start in the brain and there are an estimated 58,000 people in Scotland living with epilepsy, which is the most common neurological condition. 

This new national survey looks to understand the experiences of people of all ages living with epilepsy across Scotland and seeks to identify which specific support measures should be highlighted.

Miles Briggs said: “I am delighted to support Epilepsy Scotland in promoting this vitally important national survey to understand the specific mental health needs of people living with epilepsy in Scotland. 

“There are an estimated 8108 people living with epilepsy in my region in Lothian, which can have a serious and detrimental impact on their mental wellbeing and general day-to-day activities. 

“Depression and anxiety are just some of the mental health issues that epileptic people are more likely to develop as a result of the condition. 

“I would encourage all my constituents and people across Scotland with epilepsy to make their voices heard through this vital survey.” 

Lesslie Young, Chief Executive of Epilepsy Scotland, added: “We are pleased to have the support of Miles Briggs in promoting our ‘It’s Time to Talk about Epilepsy’ mental health survey to people living in Lothian and across Scotland. 

“Epilepsy can have a significant impact on a person’s mental health and almost every person we support through our national helpline is affected by mental health struggles. 

“To someone living with uncontrolled seizures, there is a significant psychological impact of never knowing when the next seizure is going to happen. For some who have controlled seizures, the medication can have side effects which affect mood and mental health. 

“I would encourage anyone living with epilepsy to share your experiences through our survey, to ensure your voice is heard.” 

The survey will run for six weeks and will close on Monday 13 March 2023.

To complete the survey, please go to:

https://www.epilepsyscotland.org.uk/mentalhealthsurvey/

£1 million to support people with neurological conditions

Migraine Trust and Thistle Health and Wellbeing among projects benefiting from investment

Nineteen projects supporting people with neurological conditions are to benefit from Scottish Government backing.

As part of a five-year neurological care and support action plan, innovative projects which harness new techniques and technology will be helped by a third round of funding – with £1 million commissioned for work across Scotland.

The 2022 to 2023 award will continue to support earlier projects as well as invest in new schemes.

These include a collaborative bid from the Migraine Trust and NHS Grampian to work with community, primary and secondary care pharmacists to help people with migraine manage their symptoms and treatments more effectively.

NHS Greater Glasgow and Clyde Partnership Delivery Group will also receive more than £100,000 to meet key Neurological Care and Support Framework commitments – helping people to live well and improving patient experience.

Epilepsy Scotland will receive more than £40,000 to improve mental health outcomes for people with epilepsy, and other projects include NHS Lothian’s digital neurosymptoms platform.    

Health Secretary Humza Yousaf said: “Around one million people in Scotland live with a neurological condition and our neurological action plan provides a clear vision for those affected to be able to access the care and support they need to live well, on their own terms.

“The allocation of this funding, as part of our £4.5 million investment over five years, will benefit a wide range of projects helping those living with epilepsy, Parkinson’s, ME/Chronic Fatigue Syndrome, Multiple Sclerosis, cerebral palsy and other neurological disorders.  

“We know that migraine, which affects one in seven Scots, can have a hugely negative impact on the lives of those affected by it and this investment will enable the Migraine Trust and NHS Grampian to help those dealing with it.

“But all of these innovative projects, including cross-sector collaborations, seek to ensure seamless access to high-quality and co-ordinated health, social care and third sector support in the right place at the right time.”

Funding recipients

‘Stark disconnect’: Charity’s call for better understanding of the far-reaching impacts of epilepsy

42% of people with epilepsy in Scotland want you to know this one thing … (Purple Day, 26 March)

New research shows that public understanding of epilepsy doesn’t always match with the reality faced by those living with the condition. Friday 26 March is Purple Day, the global day for epilepsy, and a chance to redress the balance. There are over 55,000 people living with epilepsy in Scotland.

In Epilepsy Action’s new poll, nearly 1,000 people affected by epilepsy were asked for the one thing they wished the public knew about the condition.

42% of those surveyed in Scotland said they wished people knew that the impact of living with epilepsy goes far beyond seizures. Side-effects of medication, memory problems and impacted mental health are just some of the things that can affect people. 

A quarter (24%) of people said their biggest wish was for better awareness of the many different seizure types. Other hopes included more understanding that not all seizures are triggered by flashing lights and that epilepsy is a fluctuating condition.

However, new figures suggest much of the general public remains unaware of the ripple effect of the condition and are dismissive of how it affects people long-term. 

One in four people (23%) thought that epilepsy has no impact on a person’s life, aside from having seizures. A third said that the condition does not impact on a person’s mental health.

In one revealing statement, two thirds agreed with the suggestion that people ‘just need to be more positive when living with health conditions’. 

Yet, with a similar number of people (68%) saying they would be afraid to even witness someone having a seizure, the charity says this exposes a stark disconnect in understanding and compassion towards people with the condition.  

Louise Cousins, director of external affairs at Epilepsy Action, said: “These new insights are stark but not surprising. The impact of living with epilepsy can take a huge toll on people’s lives, their happiness and wellbeing.

“Everyone’s experience of epilepsy is different, but it can’t be overcome just by ‘being more positive’. This attitude needs to change. Lack of knowledge and empathy feeds into fearful, harmful assumptions and people with epilepsy feeling further misunderstood and dismissed.

“By giving them a voice and encouraging conversations on Purple Day, we can really improve society’s knowledge and compassion and close the gap on this chasm of understanding.”

Yorkshire comedian Maisie Adam was diagnosed with epilepsy when she was 14. She is backing the campaign: “It’s totally normal for people to have those misconceptions about epilepsy, because of the information that’s out there at the moment. So much is frustratingly simplified, Hollywood-ified, it’s very bite-sized.

“It’s just the understanding that’s important and I think that comes from both sides. It’s about us being understanding of why people have those misconceptions but just hoping that people don’t assume – that they can hold back on any assumptions until the facts have been given. Epilepsy is so different for every single person.

“Be open to that huge variation. You’ll have your misconceptions, but don’t assume.”

Epilepsy Action has released a new awareness video on YouTube to coincide with Purple Day and to promote understanding of the condition. The charity is also urging supporters to take part in virtual fundraisers and to celebrate #purpleday on social media.

Support and information for anyone affected by epilepsy are available at epilepsy.org.uk or by calling the Epilepsy Action helpline on 0808 800 5050.

To support Epilepsy Action’s Purple Day appeal and help people affected by epilepsy, visit epilepsy.org.uk/purple

TRIM’s stamp of approval for Epilepsy Scotland

Local group wants your used postage stamps

Tenants and Residents in Muirhouse (TRIM) are collecting used postage stamps to support charity Epilepsy Scotland.

TRIM chairman Robert Pearson said: “We are always willing to do what we can to help different charities, this time epilepsy Scotland needs our help.

“They need your stamps from Christmas cards and letters, so when you get your mail and it has a stamp on if, please simply cut around it leaving a one inch border and hand them in to the community shop on Pennywell Road. The more Epilepsy Scotland receive the more cash they will get – whether it’s first class, second class or pack stamps, they will accept them all.”

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