A journey of strength and support

My name’s Yolanda Barker. I’m 53, and a proud mum to two grown-up boys and nanna to four lovely grandchildren. My life’s been shaped by many experiences. But a significant part of my story began in 1993 when I was diagnosed with MS. It’s been a journey filled with challenges, growth, and moments of triumph. 

The early days 

I became ill just one month after getting married at 21. Life was full of promise, when I suddenly went completely numb from my chest down. Initially, doctors diagnosed a brain tumour and potentially paralysing surgery. Luckily, they changed their minds and diagnosed me with MS. 

Despite the fear and uncertainty, life moved on, and I focussed on raising our son, Matthew — though constant exhaustion began to take its toll. 

Losing vision 

Out of the blue, I woke up completely blind in my right eye. Though my sight never fully returned, I adapted and soon Ben was born. Managing a toddler and a baby in our tiny house was exhausting but fulfilling. Moving to a larger home further from family brought challenges, especially after my dad passed away.  

Then came another devastating blow — I woke up without sight in my left eye. My already-limited vision made everyday tasks feel impossible. My new friends helped with nursery runs, but the lack of professional support was disheartening. Somehow, we persevered and got through the traumatic period. 

Building a community 

Joining a new group, YUMS (Young United by MS), increased my confidence and connection with others who understand, which is truly invaluable. We’re all a little older now, but we’ve stuck together. When we meet, it’s a mix of fun, peer support and general chatter. 

My connection with the MS Society began when an appeal went out for volunteers to establish a new MS Society group in South East Kent. I offered to help, initially avoiding a senior role. The group flourished with events, coffee mornings, and social activities. But leadership changes then put its future at risk. Realising it might fold, I stepped up. I’d grown in confidence and attended training, so I knew support was available. I became Secretary, Finance Volunteer, Support Volunteer, and eventually, Group Coordinator. 

Our small team achieves so much — providing trained Support Volunteers, organising events, and giving vital assistance to our local MS community. Many of our volunteers have MS themselves, bringing unique empathy and experience. Balancing everyone’s roles can be challenging, but our diversity in skills and backgrounds keeps us strong. We all pitch in and grow together. 

Facing new challenges 

Over the years, my mobility has declined, my pain has worsened, and I’m extremely fatigued. I now have the joys of dealing with bladder and bowel issues. And frequent falls make me increasingly reliant on my wonderful NHS Powerchair. I have a frightening version of sleep paralysis where I wake up, but can’t move. I manage my energy by carefully pacing myself. My eyesight isn’t great but I remain optimistic.  

Expanding my role 

Beyond the local group, I’ve found immense fulfilment volunteering with the MS Society. I’ve joined working groups, advisory panels and the national grant panel. Helping create a new grants system became my passion. Seeing the difference we made by contributing to vital items like beds, mobility scooters or wheelchairs. Although the pandemic ended the national grant scheme, I continue supporting local grant-giving efforts and helping other groups with applications. 

These experiences led me to campaigns advocating for the MS community. I’ve shared my story online, TV, radio and in print. I even visited 10 Downing Street to discuss waiting times for neurology appointments. Being a voice for others who may not feel comfortable speaking up has been incredibly rewarding. 

Why it matters 

Volunteering’s given me a renewed sense of purpose. It’s not just about helping others — it’s about helping myself, too. I’ve made lifelong friends, discovered new passions and grown in confidence. Every effort feels meaningful — from supporting fellow volunteers to advising on national campaigns. 

Even the smallest contribution can make a big difference. Whether it’s an hour a month or a larger commitment, volunteering sparks growth and creates lasting connections. 

Looking ahead 

I dream of expanding our group’s activities. I’d like to offer exercise classes, create a vibrant social calendar, and increase MS awareness locally. We need the right mix of people and skills to achieve these goals. So I hope to inspire others to step forward and join this rewarding journey. 

My journey with MS has been a rollercoaster. But it’s also been filled with growth, resilience, and a deep sense of purpose. I’m grateful for every opportunity to support and connect with others, and excited to see what the future holds. To anyone considering volunteering — take the leap. You might discover something new about yourself, make lifelong friends and find joy in making a difference. Together, we can build stronger communities and brighter futures for those living with MS.

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