A specialist neurophysio service to support people with Post Polio Syndrome (PPS), believed to be the only programme of its kind in the country, has been created.
PhysioFunction has established a dedicated offering for people who have had polio earlier in life, but for whom some effects have returned years later with the onset of PPS.
The programme, which incorporates aquatic and land-based physiotherapy, has attracted a number of people from around PhysioFunction’s base in Northampton, but through the addition of telerehab during lockdown, has involved participants from a much wider area.
PhysioFunction engages members of the British Polio Fellowship in its programme and has also secured funding from Rotary International in recognition of its innovation.
Led by neurophysiotherapist Kirsten Good, the specialist service was created in response to the needs of one client initially, but expanded once the demand for such bespoke therapy was realised.
PPS is estimated to affect up to 50 per cent of those who have had polio in younger years, and its symptoms can include decreasing muscular function or acute weakness, pain and fatigue.
“Initially, it started with one client who had a hip replacement after a fall, but wasn’t recovering as expected, he went to St Thomas’ Hospital in London and was diagnosed with PPS. He had polio as a child, but the effects of the fall, combined with the operation and the recovery process, had triggered PPS,” says Kirsten.
“Having developed something very specific in response to his needs, involving our hydrotherapy pool for aquatic physiotherapy, as well as land-based physio which includes the use of our Alter-G treadmill, we saw how well this approach worked.
“I had never worked with anyone with polio or PPS previously, but it has many symptoms in common with neurological conditions I regularly treat, and working with this client inspired me to develop an interest in this area.”
From there, PhysioFunction devised a programme built to the exact needs of people with PPS, incorporating sessions of up to 30 minutes involving hydrotherapy and equipment-based exercise.
“We have a number of polio survivors attending our groups every week, and the funding we have had to subsidise the programme has made it very affordable for them,” says Kirsten, who was named a Paul Harris Fellow by the Rotary Foundation of Rotary International for her work in developing the initiative.
“It has been very warmly received and our participants have such a fantastic ‘get up and go’ attitude. Perhaps because many had polio in childhood , they have always grown up with the long lasting effects and have learned to get on with their lives – but when we say ‘Have you tried this?’ they’re really keen to give things a go. It’s a very positive group.
“Some people initially aren’t confident in getting in and out of the pool, and the adversity to temperature changes is another big factor caused by polio, so we can vary it between land and water-based as is required.
“We also have some fitness and endurance sessions, which we offer more widely at PhysioFunction, but overexertion in exercise can exacerbate PPS symptoms, so again, this has been tailored and developed to the requirements of this condition.”
The addition of telerehab to the PPS programme during lockdown was initially greeted with some scepticism, but has now been embraced.
“I’m not sure everyone was 100 per cent keen on it initially, but it has worked well. We are able to involve new participants from some distance away, who may not have travelled to our sessions, and it has continued to build our community,” adds Kirsten.
New company launched to drive forward Parkinson’s research
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.”
Music group launched to support BAME community
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.
Art Therapy offers an emotional outlet for those living with a Traumatic Brain Injury (TBI)
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.
Interviews6 months ago
The neuropsychologist teaching tai chi
Legal9 months ago
Assessments in the virtual world
More headlines11 months ago
Frontal lobe paradox – how can we best help service users?
News10 months ago
Meet the Moodmemo…
News9 months ago
“Because rehab won’t wait”
News6 months ago
A game-changer in rehab exercise
More headlines10 months ago
Top tech and devices for at-home stroke rehab
More headlines7 months ago
Brain injury case study: Simon’s story