Today marks World Encephalitis Day. Encephalitis is a condition which affects 500,000 people every year and causes inflammation of the brain, which can cause permanent brain injury.
Yet despite this, statistics show that 78 per cent of people do not know what encephalitis is. Here, to raise awareness of encephalitis and its impact, Bruno shares his story.
“My encephalitis started suddenly from one day to the next. I was 16 at the time, and I was half way through my school lunch hour when it happened.
All of a sudden and without any warning, I felt very dizzy and lost all sense of balance.
I spent a good deal of the afternoon with friends in the school library sitting down not being able to move much.
Later in the afternoon, I was taken to hospital. There, their first reaction was that I had taken some drugs or something, maybe because one of my pupils was fully dilated.
I stayed in the hospital overnight, and they only suggested the next day that I might have some sort of virus of the central nervous system.
By then, my left side was almost completely paralysed. No exact diagnosis was ever given, and I was told nothing was known about which virus affected the top of the spinal cord where the brain rests.
The name of my condition was encephalitis, and they were sure it was viral, but, despite several lumbar punctures, they could never be sure.
I was also given some generic drugs against the herpes zoster virus.
I stayed in hospital for about a month, and recuperated in terms of basic motor and mental skills rather quickly.
However, the same cannot be said about all the more subtle skills.
Before my illness, I used to be able to windsurf and cycle rather well; I had undertaken a 200-mile cycling trip the year before on my own.
After my illness, these abilities were not even close to what they used to be, and neither were my mental abilities.
In fact, the doctors often compared what had happened to me to a computer when you ripped all of the connections and wiring away.
After I got out of hospital, all these things had to be re-learnt almost from scratch, as things like balancing on a surfboard no longer became automatic.
The same was also true for other mental activities; these had changed radically to a large extent and I could no longer simply remember everyday facts.
As a result, my studying slowed down dramatically and I very rapidly went from being drawn to science in general to being drawn to just mathematics instead because everything has its logical sequence and order with less to remember.
In this slowing down, I lost one year at school because it was decided that the wisest thing would be to spread my final year and end of school exams over two years instead of one.
This was still very challenging for me and I did not do particularly well in any of my subjects apart from mathematics.
My inability to remember things very well meant that I went to university in London to study for a BSc in mathematics. The BSc was achieved, but again, it was not particularly good.
However, it was good enough for me to carry on to MSc level and then also a PhD in mathematics.
This meant I spent approximately 10 years in London, and, as time passed, things very gradually improved and I was able to explore more complicated things, hence the PhD.
At present, I am 49 and working as an accelerator physicist in a lab in the north of Europe.
I feel my illness has very much affected my character, and I am very much of an introvert but I do have a wife and two children.
I still find it exceedingly difficult to remember small everyday facts, although, by now, this may be more due to age than anything else!
I read books, for example, and I remember having read them and the opinion that I had of them but very few of the contents.
I have a disproportionately high sense of empathy from my illness which I try to compensate for with an artificially callous attitude at times.
I am persecuted by a strange sense of impending darkness and doom most of the time. However, by and large, I am happy.
Now I feel fully recovered, apart from a slight hearing loss in one of my ears which is permanent I believe, and is due to the virus attacking the nerve, which does not grow back, rather than the protective sheath or myelin which can.
If faced with the same or a similar illness to mine, my main recommendation is not to give up and never to let it and especially its consequences take over.
I know it sounds trivial and obvious, and it may not be the case in general but it was certainly the case for me.
The doctors noticed it as well and felt my determination played a vital role in my recovery.
After you are out of hospital, it is still far from over, so prepare yourself, and those around you, for some deep character changes in yourself, and a period of roughly ten years before you can consider yourself truly well again, but it can be done.
For support, contact The Encephalitis Society on www.encephalitis.info
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.
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