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One charity’s challenging move to online group sessions

Since lockdown began in March, many people recovering from brain injuries have had to adapt to remote sessions with health workers.

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But it’s not just outpatients that have seen a change. One neuropsychologist in York is trying to sustain momentum with her support group, but navigating the new online world with patients has brought its challenges.

Just before lockdown, Diana Toseland, consultant clinical neuropsychologist, was celebrating. Her charity, Café Neuro York, became officially registered. Café Neuro is a social support network that allows people with long term neurological conditions in York to learn new skills, help others and learning to be mindful, after they’re discharged from health services.

Group members were meeting face-to-face for morning and evening meetings, and once a month on Thursday evenings there was an interactive presentation for members to enjoy. When lockdown began, Toseland wanted to continue her twice-weekly sessions online.

But adjusting hasn’t been easy – Toseland had built up a loyal user base, but sessions were very much based offline. Adjusting hasn’t been easy.

“People need this in York. People with a neurological condition need ongoing support,” Toseland says. “People with brain injuries found it helpful to come along to meet people without having to explain – they can just be who they are. It’s about what people can do, not about their condition or disability.

Since lockdown, Toseland has been struggling to know how to support people.

“I’ve got up to speed with Zoom. This week we had six people call in, but their difficulties are quite profound and they’re finding it hard to get onto Zoom. Some call in late because they forget or find it difficult, others call in with help from families.”

Toseland has found there are many technical difficulties to overcome before the sessions can begin.

“You need so many things – good internet connection, distraction-free environment, working microphones and speakers.

“One woman managed to set it up herself, her career before the injury was IT, but then she didn’t have sound. Then she tried headphones, which worked, but then she took them off and couldn’t get the microphone on the computer to work without the headphones – she was the most successful in that meeting.

“Another has poor signal so she has to sit under a tree in her garden, which means she can only do it when the weather’s good.”

Once the call is up and running, Toseland says some members find it difficult to navigate the conversation, which has entirely different unspoken social rules than offline conversations.

“They’ve found it difficult because you can’t have two people having a conversation, it’s got to be one person at a time, which requires intense concentration. People can’t sustain that level of attention long enough to fully participate in the conversation.

“Some go quiet, it leaves people with headaches, it’s fraught with disaster. They might dominate the conversation and not pick up on cues; one finds it’s too much stimulation, so she closes her eyes.”

But Toseland hopes to continue the groups, as when it does work, it works well.

“On the other hand, for those who have joined it, they’ve used it as a bit of a lifeline.”

But Toseland is looking forward to getting meetings back into the real world. She’s been runnin Café Neuro for over a year and a half, and she’s seen more progress in some members than they ever made coming to her clinical practice.

“It’s made a difference in ways I couldn’t have predicted, and an impact wider and quicker than I could’ve possibly hoped for,” she says.

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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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