MS awareness - sharing stories, inspiring others
Colleagues and service users shared inspiring personal testimonies at an event to raise awareness of multiple sclerosis at West Midlands Rehabilitation Centre (WMRC).
The highlight of the day was a talk and exhibition by local artist Sairah Din, who told attendees that discovering art as a way of releasing and expressing her emotions has had a “lifesaving” transformative effect in her coming to terms with multiple sclerosis (MS). Sairah has kindly donated one of her paintings to be displayed in the rehabilitation centre entrance.
Opening the event, BCHC chief of nursing and therapies Lorraine Galligan said supporting people with MS is an issue very close to heart personally, as well as professionally.
“My mum had MS and, when I was growing up, I was her carer and so visiting the rehab centre together was quite a regular part of our routine.
“So, when I was invited to come along today, I jumped at the chance because I know just how important the fantastic work of the MS specialist clinic here is for many families across our region."
"Nobody judges you, everyone supports you — so it’s important to be honest about what your challenges are.”
PALS manager and MS service user Kate Lawrence
As one of a number of long-term condition management clinics at WMRC, the MS specialist clinic provides assessment and advice to increase independence and quality of life for adults with multiple sclerosis.
Specialist physiotherapist and MS team lead Priya Chitre explained that the clinic’s multidisciplinary team is made up of a consultant in rehabilitation medicine, physiotherapists, occupational therapists and clinical nurse specialists, who take a holistic view of the rehabilitation potential of adults with MS.
Within WMRC, people attending the clinic also have access to speech and language therapy, counselling services, fatigue management, functional electrical stimulation and teams supporting mobility such as wheelchair services, orthotics and specialists in spasticity.
“The aim is to look at what can be done to support people with MS to have a better quality of life,” said Priya.
“So we don’t ‘treat’ people so much as look at all domains that have an impact on their ability to live as independently as possible, such as their mobility, access to communication technology, social needs and general medical needs.
“As part of ongoing assessment and review, we serve as a single point of contact that can refer or signpost people on to additional different services and sources of support, empowering individual through the best information and advice and setting them up to live with their condition better.”
WMRC patient advice and liaison service (PALS) manager and MS service user Kate Lawrence told attendees that she was diagnosed with MS in 2003 when she woke up unable to use one side of her body.
Through physiotherapy, she recovered nearly all mobility and uses FES to manage a drop foot and, sometimes, a walking stick to help her balance.
“For a long time, I found it really hard to tell people that I had MS. Not because I felt awkward but because I didn’t want them to!
“So, my main message is ‘be honest and never be ashamed’. Working for the NHS, nobody judges you, everyone supports you, so it’s important to be honest about what your challenges are.”
Sairah’s story
Visitors to the MS Awareness Day at WMRC were met by a colourful exhibition of original paintings by local artist Sairah Din.
Sairah was diagnosed with primary progressive MS in 2008, three years after experiencing unexplained falls.
Then a primary school teacher, with two young children, she admits she struggled to come to terms with her condition.
“I was so independent and active, I thought ‘oh no, it’s the end of my world’. But slowly, slowly, I was deteriorating and, over the years, I went from running, to using a stick, then to walking with the help of another person and a stick, then to a Zimmer frame until, ten years after my diagnosis, I became a permanent wheelchair user.
“Things got even harder – I deteriorated more; I couldn’t teach anymore; life had changed drastically, from being totally independent to being totally dependent. Couldn’t even feed myself; my children had to do everything for me. I felt I’d reached rock bottom.
“Then, one day, a friend of mine bought some paints and canvas and said, ‘why don’t you try painting again, you used to love it when you were young?’.
“My son set it all up for me and I dabbed my brush in the paint and had a go. I filled half the canvas from the bottom up but couldn’t reach top half! So, I stopped, turned it upside down and finished the painting. My carer came in and said ‘that’s really good’ and that was it - I started painting and painting and painting!
“I was lost in that world - I could create something! And I found that, while I was lost in a creative activity, I wasn’t grieving my past any more or worrying about my future."
Sairah’s story has been featured on BBC Midlands Today and interest is growing, with exhibitions of her work and a stall at a Christmas arts and crafts fair.
Sairah says that each artwork is a journey of discovery - she doesn’t know what it will become, but she says it is a non-verbal and highly therapeutic way of processing experiences and expressing herself.
“It’s very much about representing my emotions; or it can be an abstract representation of a pain spasm; or a metaphor for escaping – like a landscape or a seascape.
“What I do know for certain is that the more I create, the happier I become inside - I feel a real sense of purpose. Art has given me an escape from my worries and I didn’t even know I could do it until I put that brush on that canvas. Art truly saved my life.”
- More than 150,000 people in the UK live with MS. It is caused by a mixture of genes, lifestyle and environmental factors, including Vitamin D deficiency and exposure to some viruses. Common symptoms include fatigue, vision loss, numbness/tingling, balance loss, muscle cramps.
mssociety.org.uk
Sharing stories – pictured at the MS awareness event are (left to right) chief of nursing and therapies Lorraine Galligan; specialist physiotherapist team lead Priya Chitre; specialist rehabilitation services manager Holly Tuite; WMRC patient advice and liaison service (PALS) manager and MS service user Kate Lawrence; MS Society regional development officer Lyndsay Smith.