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‘I was utterly distraught, because I knew I might never again be with the woman I love.’

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‘We met purely by chance and it was love at first sight.’

Lockdown has prevented Kevin Jones from being with his partner, who has Parkinson’s and dementia with Lewy bodies, in her care home. Here, he shares his story.

“When this horrible, horrible condition started, our lives changed basically overnight.”

They are the heartbreaking words of Kevin Jones, whose partner Jean has dementia with Lewy bodies.

Jean now lives in a care home that has been locked down during the pandemic, with Kevin only able to see her through a bedroom window.

‘I’d give anything to be able to sit by her side, hold her hand and give her a kiss,’ he says.

Kevin, who lives in Wrexham, north Wales, says, ‘This is not just my story, this is Jean and I – she was my rock.’

Kevin visited Jean every day prior to the pandemic.

Jean, now 80, grew up in Newport and was an office manager for various companies. She met Kevin in 1990, while she – by then divorced – was holidaying with her daughter Julie.

‘We met purely by chance and it was love at first sight,’ says 71-year old Kevin, a former police officer.

Jean was excellent at crosswords and sudoku, and she loved opera. Having both retired in 2000, she and Kevin enjoyed winter sun holidays and cruises.

‘She was always loyal, supportive and 100% genuine,’ says Kevin. ‘My only regret is that I had not met Jean 50 years ago instead of only 30.’

In December 2016, Jean fell as she was leaving the couple’s flat. They pushed ahead with a planned holiday, but it was soon clear that something wasn’t right.

‘Jean became very anxious at the airport and wouldn’t let go of my hand,’ says Kevin. ‘At the hotel, she wouldn’t come down for breakfast and didn’t want to be around crowds or interact with people. She also lost all interest in our usual walks.’

Jean had numerous medical appointments over the following months. Despite support from Kevin and others, she began to have spasms and had to spend time in hospital. She was diagnosed with Parkinson’s, and a consultant confirmed that she also had dementia with Lewy bodies.

People who have dementia with Lewy bodies can have problems with attention and alertness that vary over time, and difficulties judging distances.

They may see or hear things that aren’t there, have persistent false beliefs or experience disturbed sleep. Difficulties with movement, which increase the risk of falling, affect many people with the condition.

As with other types of dementia, symptoms increase and get worse over time. As it progresses, day-to-day challenges become more similar to other types of dementia.

‘Jean would say, “What are those birds doing on the ceiling? Why are there cats and dogs walking on the walls?”’ recalls Kevin. ‘She also started shouting and screaming at night, which was very distressing.’

With Kevin struggling to cope, Jean moved to a nursing home for around six months, where her health improved. But after returning home she soon deteriorated and moved back into a care home, this time on a permanent basis, in June 2018.

‘We were very lucky that we found a home which could support Jean with dementia, epilepsy and Parkinson’s,’ says Kevin. ‘It was excellent – I went every single day and was made part of the family.’

One Sunday in mid-March, Kevin was with Jean when the home’s manager said the building was going into lockdown.

‘Jean didn’t really understand what was happening,’ says Kevin. ‘I said to her, “I don’t know when I’ll be able to come back here and be physically with you, my love. I love you lots and I’ll see you as soon as humanly possible.”

‘I was utterly distraught, because I knew I might never again be with the woman I love.’

The home encouraged socially distanced outside visits, but because of Jean’s frailty and health, Kevin wanted her to stay in her warmer room. He sees Jean through her ground floor window every Sunday.

‘The staff wheel her chair to the window. We can’t have a conversation, but at least I can see her. Some residents are on the first floor and their loved ones haven’t been able to see them since March.

‘It’s heartbreaking and I’m devastated when I come home to an empty flat. I just sit on a chair and cry. I’m in utter shreds. Then as the week progresses, I get stronger.’

Kevin was shocked when Jean developed COVID-19 in July, though thankfully she recovered.

‘At the time I was very upset,’ he says. ‘I’ve since taken stock and understand the difficulties they have in these care homes. If you have a flood, some water might get in.’

Kevin gets weekly Companion Calls over the phone from Alzheimer’s Society volunteer Rachel.

‘Rachel was my only light at the end of the tunnel when I was self-isolating,’ says Kevin. ‘It was all I had from March to August – some weeks she was the only person I spoke to.

‘She has been a listening ear, and very supportive. I can say how I feel, how I miss Jean. She never judges me or criticises, she just listens.

‘I would like to sincerely express my gratitude to her and Alzheimer’s Society. If I wasn’t able to talk to somebody, I think I’d have serious mental issues. I’m truly thankful for those calls.’

Kevin welcomed the recent announcement of a pilot scheme for family carers to be treated as key workers.

‘Whatever model they use, if something was offered to me, I’d jump at it,’ he says.

Recent months have been agonising for Kevin, but he’s keen to share his and Jean’s story.

‘For anyone out there with nowhere to turn, like I was in March, they may think, “I’m not alone.”’

And, as difficult as he finds them, Kevin continues his weekly visits to see Jean, no matter what.

‘On occasion, up until very recently, she could look at me with recognition in her eyes,’ he says. ‘I know, when we have that moment, the bond between us is stronger now than it has ever been.

‘Those moments are so precious to me, I just can’t explain. That keeps me going.’

* Interview shared with permission from Dementia together, the magazine of Alzheimer’s Society – www.alzheimers.org.uk/magazine

News

New company launched to drive forward Parkinson’s research

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Up to £800,000 will be invested over the next two years

Charity Parkinson’s UK is to launch a new company dedicated to driving forward research into Parkinson’s disease.

Vivifi Biotech has been created to lead and plan preparations for a new trial into the role of the restorative protein glial cell-derived neurotrophic factor (GDNF) in Parkinson’s.

Launched through the charity’s drug development arm, Parkinson’s Virtual Biotech, up to £800,000 will be invested over the next two years as efforts continue to find a life-changing new treatment for people living with the disease.

Plans for a new trial build on the initial groundbreaking clinical investigations in GDNF, the results of which proved inconclusive but did show some signs that the treatment may have started to regenerate participants’ dopamine-producing brain cells.

“The unwavering passion and determination of the GDNF participant group has ensured that the potential of GDNF, and the role of patients in research, has never been forgotten,” says Paul Jackson Clark, director of engagement at Parkinson’s UK.

“They’ve tirelessly campaigned, fundraised and shared their experience with us, enabling us all to get to this monumental point.

“We now have the chance to see if we can find a life-changing new treatment that people with Parkinson’s desperately need. There are still plenty of obstacles but this announcement gives us the opportunity to move things forward together.”

Parkinson’s UK was the major funder of the initial trial, which investigated whether boosting levels of GDNF could slow, stop or reverse the progression of Parkinson’s.

Tom Phipps was a participant in the GDNF trial.

“My outcome was as positive as I could have wished for, I feel the trial brought me some time and has delayed the progress of my condition,” he says.

“The trial participants have always believed in GDNF’s potential,” said Parkinson’s UK in their announcement.

“So have we and the other organisations involved in the trial.

“Some participants tell us they’re still experiencing the benefits, years on from undergoing this experimental therapy. We’ve been working with them since the end of the trial.

“Together, we want to make sure we’ve explored every option.”

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Community rehab

Music group launched to support BAME community

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Leicester Musical Memory Box is launching its online music project Geet Sangeet

A music group established to support people living with dementia, memory loss and brain injury has received funding to launch an online project for the South Asian and BAME community.

Leicester Musical Memory Box (LMMBox) was founded in July 2018, and since that time has grown from one group in the city to six, providing interactive music sessions for people of all ages and backgrounds, including a group specific to the South Asian community.

The group – which has two staff members who are fluent in Gujarati, Hindi, Punjabi and Urdu – aims to provide the local community with a supportive network and a safe space to explore the unique challenges that a brain injury may bring to individuals, as well as their families and carers.

The new online music project is named ‘Geet Sangeet’ – translated as ‘Songs Sung Together’ – and will incorporate music and cultural references specific to the South Asian community, led by group leader Beena Masand from LMMBox.

Each session will begin with gentle exercises to warm up the body and brain, followed by singing and discussion about various music, songs, and media.

Attendees will also receive their own ‘musical memory box’ in a bag to help increase the interactivity of the sessions.

The project has received funding from the new Local Connections Fund, and is in collaboration with Headway Leicester.

Music has proven benefits for people with memory problems or a brain injury, including enabling people to connect with past experience and enabling freedom of expression, confidence and independence.

Attendance at the groups also helps to improve mood and reduce feelings of social isolation.

“We know we are providing a vital service to our members and receive enquiries regularly,” says Kyle Newman, group leader and co-director of LMMBox.

“In spite of the lockdown, we are thrilled to be able to once again provide a culturally specific group for the South Asian community.

“We also know that the group leader needs to come from that community and have the music and cultural knowledge to be able to engage participants effectively.”

“We are delighted to collaborate with LMMBox and reach out to more people across Leicester who have been affected by brain injury,” adds Mary Goulty, service manager at Headway Leicester.

“There is a clear need for a support service within the BAME community and that’s why we launched our BAME group last year, which is providing a vital lifeline to brain injury survivors we support and their families.”

To contact LMMBox, visit www.leicestermusicalmemorybox.co.uk

For support with brain injury in the Leicester community, visit www.headwayleicester.org.uk.

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News

Art Therapy offers an emotional outlet for those living with a Traumatic Brain Injury (TBI)

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Masks not only allow us to hide our true feelings but to also express them without fear of judgement.

Being able to ‘hide’ one’s true self, may be a way, for others, to truly ‘show’ themselves.

For this reason, Chroma therapists began delivering Art Therapy sessions online to those living with a Traumatic Brain Injury (TBI) in an attempt to help them express their emotions in a creative, non-threatening way.

A TBI can have devastating effects upon a person’s mental health, as well as physical, with emotional issues caused by significant, sudden changes in appearance and abilities.

Studies have found Art Therapy to be effective in helping TBI patients with emotional expression, socialisation, emotional adaptation to mental and physical disabilities, and communication in a creative and non-threatening way.1

Self-expression is fundamental in processing the effects of a TBI. Take a look at the image below.

On the left is the base mask. During the process of art therapy, across a number of sessions, the participant talks, reflects and begins to create ideas or metaphors which then get placed onto the base mask. Often this depicts the face he presents to the outside world, in contrast with the dual parts of to his inner personality including a bright peaceful side and a dark, tumultuous side.

Based on the sessions, Chroma therapists are better able to gauge the patient’s feelings, discuss the final piece and help the patient begin to process their emotions.

In effect, art therapy offers a creative gateway to communication and used in this way, tries to enable the participant to externalise their inner thoughts and feelings.

As a therapy, it has been shown to help reduce feelings of stress, promote creativity and imagination as well as increase self-expression, confidence and communication.

Chroma began delivering these sessions as a way to allow clients to reveal thoughts and feelings about themselves which they may find hard to express, or may not even be aware of, and which may be being expressed through more difficult behaviours.

They also create an opportunity for greater communication, allowing therapists to gain a deeper understanding of the client’s thoughts, anxieties and feelings.

Being able to express themselves creatively helps the client reveal their true feelings, which in itself can be cathartic – a relief to release their emotions, in a personal, safe space.

Chroma continues to deliver these sessions online to help reach as many TBI sufferers across the UK as possible in an attempt to help them begin to process their emotions concerning the effects the TBI had upon them, with the outlook to help improve their mental wellbeing which in turn will help promote a positive outlook to life and rehabilitation outcomes.

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