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“It’s just what you do for the person you love”

Stroke carers open up on their stress, anxiety and isolation.

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Stress, anxiety and exhaustion are at epidemic levels among people caring for stroke survivors, research suggests.

A study by UK stroke charity the Stroke Association found that 40 per cent of stroke carers who have been caring for more than three years report feeling exhausted, while around a third are stressed or anxious.

Almost one in five (19 per cent) have not accessed any form of external help since the stroke occurred – with more than a third (35 per cent) saying they receive no emotional support.

There are currently over 1.2 million stroke survivors in the UK and this number is predicted to rise to 2.1 million in 2035.

The Stroke Association’s Lived Experience study is the UK’s largest survey of people affected by stroke, with over 11,000 responses.

The charity is warning that stroke carers are coming under increasing pressure to manage their own daily needs while caring for their loved ones.

Almost half (47 per cent) of the carers who did not have any support said that they were not offered any help, or did not know where to start, the charity says.

Stroke carers are also feeling isolated, with over a quarter (27 per cent) of carers saying there are not enough support groups for them.

Ann Turner, 66, from Ampthill, understands the pressures and concerns family members face when caring for someone who has had a stroke. She has been a carer for husband Les, 68, since 2010 following two major strokes, which left him unable to speak and move his right side.

Following his strokes, Les had to have three months of rehabilitation while in hospital, with Ann at his side, followed by months of physiotherapy which is still ongoing.

Ann says: “Our lives were turned upside down after Les had his two strokes. As well as major problems with speaking, Les has had to learn to do everything with his left hand so straight away he became reliant on me for everything he needed on a daily basis.

“My main motivation has always been to keep Les in his own home rather than residential care, which we’ve been able to do. We have been married for 45 years, so of course I do everything I can for him – it’s just what you do for the person you love.”

While Ann is always on hand for everything Les may need, she has also learnt the importance of caring for herself too.

Ann says: “What I’ve learnt from the experience is that as a carer, it’s so important to take care of yourself physically and mentally. I do exercise classes, walk to town and have coffee with a friend every other day and practice mindfulness. I’ve discovered that If you don’t look after yourself, how can you look after someone else?”

Juliet Bouverie (pictured), chief executive of the Stroke Association, says: “Lives change in an instant after a stroke. Overnight, a partner becomes an unpaid carer. We know that thousands of people all over the UK are dedicating their lives to caring for loved ones, whose speech, independence, emotional wellbeing or personality could be affected after a stroke.

“And as these new figures show, over time, taking on the role of carers often comes at the cost of their own health. Sadly, far too many people are facing this devastating situation alone and unsupported.

“The number of stroke survivors is set to rise by almost one million people by 2035. So this problem is only set to get worse.”

Emily Holzhausen OBE, director of policy and public affairs at Carers UK, says: “Suddenly taking on care for a family member who has experienced a stroke can be a whirlwind of change, with carers having to adapt quickly but often unaware of where to turn to for support.

“Enduring high levels of stress and exhaustion, many carers see their finances worsen and find it difficult to prioritise their own needs, continuing their caring role without support.

“Unpaid carers and the people they care for urgently need better quality support and access to services. The Government must deliver plans for social care reform that ensure carers get the practical and financial support they need to care without putting their lives on hold.”

For more information about the Lived Experience of Stroke report – Caring for a stroke survivor: what carers need – visit www.stroke.org.uk/livedexperience.

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Spinal cord patients see improvement in motor functions in new trial

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After being injected with stem cells, patients reported an improvement with their motor skills

Intravenous injection of bone marrow derived stem cells (MSCs) in patients with spinal cord injuries led to significant improvement in motor functions, new research has found.

For more than half of the patients, substantial improvements in key functions — such as ability to walk, or to use their hands — were observed within weeks of stem cell injection, the study from Yale University reports.

No substantial side effects were observed, they added.

The patients had sustained non-penetrating spinal cord injuries, in many cases from falls or minor trauma, several weeks prior to implantation of the stem cells.

Their symptoms involved loss of motor function and co-ordination, sensory loss, as well as bowel and bladder dysfunction.

The stem cells were prepared from the patients’ own bone marrow, via a culture protocol that took several weeks in a specialised cell processing centre.

The cells were injected intravenously in this series, with each patient serving as their own control. Results were not blinded and there were no placebo controls.

Yale scientists Jeffery D. Kocsis, professor of neurology and neuroscience, and Stephen G. Waxman, professor of neurology, neuroscience and pharmacology, were senior authors of the study, which was carried out with investigators at Sapporo Medical University in Japan.

Key investigators of the Sapporo team, Osamu Honmou and Masanori Sasaki, both hold adjunct professor positions in neurology at Yale.

Professor Kocsis and Professor Waxman stress that additional studies will be needed to confirm the results of this preliminary, unblinded trial.

They also stress that this could take years, but despite the challenges, remain optimistic.

“Similar results with stem cells in patients with stroke increases our confidence that this approach may be clinically useful,” notes Professor Kocsis.

“This clinical study is the culmination of extensive preclinical laboratory work using MSCs between Yale and Sapporo colleagues over many years.”

“The idea that we may be able to restore function after injury to the brain and spinal cord using the patient’s own stem cells has intrigued us for years,” adds Professor Waxman.

“Now we have a hint, in humans, that it may be possible.”

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Inpatient rehab

Family hail ‘amazing’ care at neurorehab centre

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Fraser Millar and his family

A family whose beloved husband and father had a stroke are fundraising for the neurological centre where he currently resident, after being impressed by the “amazing” standards of care.

Fraser Millar needed life-saving brain surgery in November last year and is now in Woodlands Neurological Care Centre in York, receiving intensive rehabilitation to aid his recovery.

Woodlands, a level two neurorehabilitation centre which is part of Active Care Group, specialises in maximising recovery and independence and sets patients rehabilitation goals that promote re-enablement and enhance quality of life.

Now, Fraser’s family – wife Debs and children Alex and Ryan – are fundraising on behalf of Woodlands, to purchase therapy equipment which will benefit people who are undergoing rehabilitation at the centre.

To remember the long walks Fraser and Debs used to enjoy so much, Debs and daughter Alex are walking the equivalent 230 mile distance from York to Perth in Scotland, where Fraser is from.

Having set a target of £500, the total now stands at over ten times that amount, with over £5,680 being raised at the time of writing.

Family, friends and work colleague donations have come from as far afield as Canada and Australia, from people inspired by the Millar family’s story, which has been widely shared on social media and is touchingly accompanied by the hashtag #comeondad.

“We feel the team at Woodlands have become extended members of our family, they’ve been amazing,” says Alex.

“One of dad’s hobbies is cooking, he’s an amazing chef and loves to watch cookery programmes on TV in the kitchen at home. Woodlands staff noted this on his arrival day and within 20 minutes dad was watching The Hairy Bikers in his room and he continues to watch various culinary programmes!

“Staff there make a huge effort to make dad comfortable, take great care of his needs and interact with us brilliantly, we’re so thankful and extremely happy he’s having the best care.

“We’re raising money to say a huge thank you and while we’re doing it for dad, it’s great that it will benefit other patients too.”

Debs and Alex initially set a target of completing their walk by March 7, which is Debs’ birthday, but typical of their determination, they had already finished by February 24. Their fundraising target has also been vastly exceeded, with donations continuing to come in by the day.

“We initially thought our family and close friends would help with our fundraising cause, but the charity page was quickly circulated and within hours are target was met and the figure kept rising, we couldn’t believe it! We are incredibly thankful for every donation,” says Alex.

“We feel so touched and overwhelmed to have had such amazing support for dad. We walked the long miles but the generous donations kept us going and without them we wouldn’t be in the position to present Woodlands with the equipment they deserve.”

To add support to the Millar family’s fundraising on behalf of Woodlands Neurological Care Centre, visit https://www.gofundme.com/f/woodlands-neurological-rehabilitation-centre

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Could sesame seeds help protect against Parkinson’s?

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There is currently no cure of Parkinson's, but research like this could help change that

A chemical commonly found in discarded waste from the sesame seed oil manufacturing process could have protective effects against Parkinson’s disease, new groundbreaking research has found.

Sesaminol, abundant in the empty shells of sesame seeds which are discarded after the fatty oils are extracted, could have a role to play in protecting against neuron damage in the brain, researchers from Osaka City University have revealed.

“Currently there is no preventive medicine for Parkinson’s disease, we only have coping treatments,” says OCU Associate Professor Akiko Kojima-Yuasa.

Professor Kojima-Yuasa led her research group through a series of experiments to understand the effects of sesaminol on in vitro and in vivo Parkinson’s disease models.

Parkinson’s disease is caused when certain neurons in the brain involved with movement break down or die due in part to a situation called oxidative stress – neurons in the brain come under extreme pressure from an imbalance between antioxidants and reactive oxygen species (ROS).

The team found in cell-based in vitro experiments that sesaminol protected against neuronal damage by promoting the translocation of Nrf2, a protein involved in the response to oxidative stress, and by reducing the production of intracellular ROS.

In vivo experiments brought Professor Kojima-Yuasa’s team what the University have hailed as equally promising results.

The impairment of movement due to Parkinson’s disease is the result of damaged neurons producing less dopamine than is naturally needed.

The team showed that mice with Parkinson’s disease models show this lack of dopamine production. However, after feeding the mice a diet containing sesaminol for 36 days, the research team saw an increase in dopamine levels.

Alongside this, a rotarod performance test revealed a significant increase in motor performance and intestinal motor function.

With the first-ever medicine for Parkinson’s disease potentially being the naturally occurring food ingredient sesaminol, and this ingredient being found in the naturally occurring waste of the sesame seed industry, Professor Kojima-Yuasa and her team are ready to take their work to the clinical trial phase and connect the consumption/production chain in a way that, as she puts it, “prevents diseases with natural foods to greatly promote societal health.”

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