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It’ll be lonely this Christmas – but at least I’ll be here to enjoy 2021

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MS patient Leanne has rejected the chance to spend time with her loved ones this Christmas because of the pandemic

For Leanne, who has MS, the opportunity to gather with loved ones on Christmas Day is one she feels she must decline. Here, she shares her reasons for choosing to be lonely this Christmas.

Christmas is my favourite time of year, and ordinarily I’d be out celebrating, seeing friends and family, and planning something really fantastic to see in the new year.

But like for so many other people, 2020 is going to be so different. I’ll be completely on my own. And while under normal circumstances that would be the most heartbreaking Christmas I could imagine, this year it is undoubtedly my best option.

At least, that way, I’ll still be here to enjoy 2021 and the years beyond that.

I’m a young woman with Multiple Sclerosis (MS), so I’m classed as being ‘clinically vulnerable’. I’ve spent the vast part of the past year shielding, at first in line with Government advice, but once rules were relaxed, I shielded out of choice.

In a world where COVID-19 seems to be everywhere, I’m safer in my own home. It’s hard not seeing people. At first, it was absolutely horrific and I struggled immensely. The loneliness was the hardest part. I’m used to being out, living my life, which is what I promised myself I’d do when I received my devastating MS diagnosis aged only 24.

But the pandemic has brought completely unknown challenges, and the ever-present threat of an invisible virus. Never, ever did I imagine I’d spend the best part of ten months indoors, but that has become the reality – and if it’s a choice of doing this to save my life, so I’m here for years to come, I’ll take it.

Video calling became my only means of communicating with the outside world, and some days I’d spend most of my waking hours on FaceTime to my parents, reassuring them I was fine. They were so desperate to come round and take care of me, but the thought of the virus getting into my home was so terrifying, I allowed them only to wave through the window.

As rules became more relaxed, the risk to people like me was still no less real, and probably by being able to visit more places and encounter more people, the chance of catching COVID was probably as high as it ever was. So I resolved to remain at home.

The last few weeks have been a nightmare, amidst the many well-meaning invitations I’ve had from my parents and many friends, inviting me to be part of their three household bubble for Christmas. My reasons for declining are constantly challenged – ‘But we’re allowed to meet up after all this time, you need to take advantage of it,’ is the usual response.

The decision to enable people to gather for five days over Christmas was a very bad move, so while I am pleased that has been revised down to one day only, I still believe that shouldn’t happen either. Not only does it present the probability of COVID being spread, it means the pandemic is going to go on for even longer as the confirmed cases go up. Which means my isolation is going to continue well into 2021.

My Christmas Day will consist of opening presents, FaceTiming parents and friends for many hours, watching Christmas movies, and probably not getting out of my pyjamas for the whole day. I have bought a turkey for lunch too – not sure yet whether I’ll go to the trouble of cooking all the trimmings for one. While I’m trying to bring a bit of normality to Christmas, doing the things I’d usually do, in reality, nothing about this Christmas will be ‘normal’.

I’d like to wish everyone a very merry Christmas, however you spend it – and those like me, who are spending it alone, will be in my thoughts. But we can take comfort in the fact that however dreadful 2020 has been, 2021 will be a better year – one where we can (hopefully) see our friends and family, hug them again, and enjoy celebrations like we used to. That will be what gets me through this festive season.

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Landmark breakthrough in understanding Alzheimer’s

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Brain cells vulnerable to Alzheimer’s Disease have been identified for the first time, in a breakthrough scientists hope could lead to targeted treatments to boost the brain’s resilience.

It has so far remained unknown in Alzheimer’s research why some brain cells succumb to the disease years before symptoms first appear, while others seem unaffected by the degeneration surrounding them until the disease’s final stages.

Now, in a groundbreaking study, the neurons that are among the first victims of the disease –  accumulating toxic ‘tangles’ and dying off earlier than neighbouring cells – have been identified for the first time.

“We know which neurons are first to die in other neurodegenerative diseases like Parkinson’s disease and ALS, but not Alzheimer’s,” says co-senior author Martin Kampmann, associate professor in the UCSF Institute for Neurodegenerative Diseases.

“If we understood why these neurons are so vulnerable, maybe we could identify interventions that could make them, and the brain as a whole, more resilient to the disease.”

Alzheimer’s researchers have long studied why certain cells are more prone to producing the toxic tangles of the protein known as tau, whose spread through the brain drives widespread cell death and resulting progressive memory loss, dementia, and other symptoms.

But researchers have not looked closely at whether all cells are equally vulnerable to the toxic effects of these protein accumulations.

“The belief in the field has been that once these trash proteins are there, it’s always ‘game over’ for the cell, but our lab has been finding that that is not the case,” said Lea Grinberg, senior co-author and associate professor in the UCSF Memory and Ageing Centre.

“Some cells end up with high levels of tau tangles well into the progression of the disease, but for some reason don’t die.

“It has become a pressing question for us to understand the specific factors that make some cells selectively vulnerable to Alzheimer’s pathology, while other cells appear able to resist it for years, if not decades.”

To identify selectively vulnerable neurons, the researchers studied brain tissue from people who had died at different stages of Alzheimer’s disease, obtained from the UCSF Neurodegenerative Disease Brain Bank and the Brazilian BioBank for Ageing Studies.

The São Paulo-based biobank collects tissue samples from a broad population of deceased individuals, including many without a neurological diagnosis whose brains nevertheless show signs of very early-stage neurodegenerative disease, which is otherwise very difficult to study in humans.

The team studied tissue from ten donor brains using a technique called single-nucleus RNA sequencing, which let them group neurons based on patterns of gene activity.

In a brain region called the entorhinal cortex, one of the first areas attacked by Alzheimer’s, the researchers identified a particular subset of neurons that began to disappear very early on in the disease.

Later in the course of the disease, the researchers found, a similar group of neurons were also first to die off when degeneration reached the brain’s superior frontal gyrus.

“These findings support the view that tau buildup is a critical driver of neurodegeneration, but we also know from other data from the that not every cell that builds up these aggregates is equally susceptible,” adds researcher Kun Leng.

“Our discovery of a molecular identifier for these selectively vulnerable cells gives us the opportunity to study in detail exactly why they succumb to tau pathology, and what could be done to make them more resilient.

“This would be a totally new and much more targeted approach to developing therapies to slow or prevent the spread of Alzheimer’s disease.”

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Patients enabled to take control of recovery through new programmes

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Two new Recovery Facilitation Programmes (RFP) designed to empower people to take greater control of their recovery and enable them to better manage their conditions have been launched.

Energise Health’s six-week programmes, Energise Recovery and Energise Recovery 4Life, equip both recently-diagnosed people and those living with long-term conditions with the knowledge and skills they need to make beneficial and lasting changes.

Energise Recovery – for those at an early stage of recovery – and Energise Recovery 4Life – for those at least six months into their recovery journey – are online programmes that offer live teaching sessions on a range of topics, alongside practical activities and guided coursework.

Energise Health has been created by Nurse Pain Specialist Dr Dee Burrows and Occupational Therapist Victoria Collins, who brought together years of expertise to develop these programmes, which they have seen, from their own experiences, are badly needed.

“The concept came from a really challenging case we were both working on, where we realised that had this particular client been given access to something like this at an early stage in their recovery, it would have prevented so many secondary complications,” says Victoria.

The programmes – devised over 18 months, in consultation with experts in the field – aim to educate participants in how to tackle and improve issues around pain, stress, depression, poor sleep and lack of confidence in daily activity. Participants are shown how to adopt a bespoke range of strategies that they can incorporate into their daily lives to help them manage.

Although the business launched during the COVID-19 pandemic, unlike many initiatives that were taken online out of necessity, Energise Recovery and Energise Recovery 4Life were intentionally developed as online programmes.

“We designed this to be online as we wanted a facilitated group-based programme,” says Dee.

“And when you are supporting people who are living with injuries or conditions, their recovery is best facilitated if they have the energy to spend on it, rather than exhausting themselves through travel. It is also a more environmentally friendly model, which is important to both of us.

“We can have people from across the country, whether Edinburgh, Leeds, or Cornwall coming together in a way that will benefit them individually and collectively. We look forward to sharing it with more people.”

Energise Recovery and Energise Recovery 4Life introduce participants to a range of strategies from mindfulness to Tai Chi, belly breathing to sleep management, diet to exercise and connecting with others, all backed by a comprehensive handbook and activity diary.

“We are enabling people to try a range of different strategies – all of which have been carefully chosen for this purpose, determine which ones they want to pursue and learn how to integrate them into their daily routine,” says Victoria.

“We enable them to develop a personalised toolkit, with strategies to manage their conditions.  Participants can develop their own script. We are empowering them to find out what works for them.”

In the six-month pilot of both programmes, engagement levels were 100 per cent in terms of both session attendance and self-reporting, with ongoing success seen in terms of individual outcomes. On average, participants started their programme with 3.75 self-management strategies, rising to 26.25 at programme completion.

“What we do is based on the principles of hope, engagement, support and self-management, and the desire to change is something we look for when accepting participants,” says Dee.

Victoria says: “The programmes are a foundation. We provide high quality resources and links for people to learn more and develop if they wish, and, through our teaching, explain key components and how they might be applied. It is bitesize and digestible.

“We are enabling people to enhance their ability to self-manage. By adopting the strategies into their lives, we have already seen how this can give individuals hope for the future and be of great benefit to their mental, social and physical wellbeing.”

Dee adds: “While the early stage Energise Recovery Programme will always give the best possible chance of recovery, Energise Recovery 4Life can be equally beneficial for those with long-term conditions, including, for instance, Long Covid

“We have noticed that some participants do better with their clinical interventions when they have completed the Programme as a foundation and have a toolkit of strategies in place. It can also, however, work well in tandem with, or after clinical interventions.”

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Concussion substitutions approved in football – but move ‘doesn’t go far enough’

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Charity Headway argue that the move still does not go far enough

Years of campaigning for concussion substitutions to be introduced into football look set to deliver some success, with Premier League clubs preparing to adopt the policy to help address the need to protect players from the effects of head injury.

In a trial move, expected to take effect from fixtures next week, teams can use up to two substitutes in the event of head injuries, which will be in addition to the usual three substitutions that can be made in a normal match.

The substitutions – which will be permanent and not for 10-minute durations as in rugby, to allow for players to leave the pitch for medical assessment and return if deemed able – are expected to be approved at a meeting of the Premier League tomorrow.

Pressure has been mounting on football to address the issue of players suffering concussion and head injuries during matches, with on-pitch medics having to make decisions in three minutes on a player’s ability to continue, returning him to the pitch, or else removing him from the match completely.

The Premier League will become the first league to adopt concussion substitutes, and the finer details are currently being agreed with FIFA ahead of their expected introduction in a matter of days.

However, brain injury charity Headway argue that the move still does not go far enough in awarding protection to players, and argued permanent substitutions are not the way forward.

“We’ve been pushing for many years to bring football up to date with other sports in terms of concussion substitutes, but this plan involves permanent substitutes rather than concussion substitutes,” deputy chief executive Luke Griggs tells NR Times.

“So in that sense, it’s a bit disappointing.

“The FA chief executive said in December they needed to explain why permanent substitutes are better than temporary substitutes in this situation, but that has not happened.”

While it is a step forward that players are being protected, say Headway, the 10-minute alternative that works in sports like rugby has much greater benefits.

“In sounds great that football are introducing this measure which has been needed for a long time, but in practice, the medical assessment of the player is still going to have to be made in that three minute window on the pitch, rather than in the quiet confines of the dressing room if you had ten minutes,” says Luke.

“You also need a degree of honesty from the players in being able to assess them properly, and for them to say they feel nauseous and have blurred vision after a collision. If they know they are going to be taken off for the whole match, rather than the potential to return after ten minutes, then they might not want to be so honest.

“Of course we realise that even in ten minutes some symptoms may not present themselves, and it could be 24 hours later or maybe longer, ten minutes off the pitch to make an assessment is an awful lot better than three minutes on it.”

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