Skip to main content

"Every person with MS has a remarkable story to tell"

03D5507C-F8A1-466D-98EF-A1292DE19FA4_1_201_a.jpegWe chat to Grazina Berry, the new CEO of the Overcoming MS charity, on what their message and mission means for people living with MS

I joined the Overcoming MS (OMS) charity as its CEO at the start of July this year. I was drawn to OMS due a personal connection – a close member of the family lives with multiple sclerosis (MS), but also because the evidence-based seven-step recovery programme has immense potential to transform the lives of many at scale.

The programme is based on the work of George Jelinek, Professor and Head of the Neuroepidemiology Unit (NEU) at the University of Melbourne. The NEU investigates the modifiable lifestyle risk factors that predict the progression of MS with a view to refining a preventive and holistic approach to manage the condition.

There is some evidence that a range of environmental factors, such as low levels of sun exposure leading to a lack of vitamin D, a diet high in saturated fat, smoking, and stress play a significant role in MS progression. And so, at the core of the OMS programme are seven steps that can be taken to address those factors, by

  1. Diet. Eating a plant-based whole food diet, with no meat and dairy, and high in omega 3
  2. Vitamin D and sunlight. Getting sufficient levels of Vitamin D drawn directly from the sun by being outdoors, and supplementing daily
  3. Exercise. Doing at least 30 mins of exercise, three to five times a week
  4. Meditation and mindfulness. Making time daily to maintain a healthy mind and body connection to bust stress
  5. Medication. Taking medicines in consultation with your health professional
  6. Prevention. Some 25 percent of the risk of getting MS is genetic, and so making some changes early on (quitting smoking, getting enough vitamin D, eating a healthy diet that’s low in saturated fat, and supplemented with flaxseed oil, keeping those stress levels down and exercising regularly) can play a key preventative role in family members getting MS
  7. Lifestyle changes. Making these changes for life so you can live well, despite MS

Our main message is that thousands of people with MS world-wide have been able to adopt the OMS programme and are living well, and so can you. Our organisation is here to help, guide, inform and empower everyone to make these lifestyle changes and give people with MS real hope that they can live well.

Strong individuals

Every person with MS has a remarkable story to tell. For some, their story is full of hope and optimism, for others, it’s one of challenge. This is reflective of the fact that everyone’s life with MS will be very different. I’ve been particularly moved by the story of Abre, a 17-year old boy from South Africa. He lost his sight for six months at the age of just three, and 11 years later, was diagnosed with MS after a major relapse. Abre has been able to change his life, having discovered the OMS programme and is pursuing his dreams. His motto is ‘I have MS, MS does not have me’. This is powerful, inspiring and real.

The challenge for MSers

The world we live in at the moment due to the pandemic is extremely challenging, frightening and uncertain, and this is difficult for everyone. Being faced with MS can add to the challenges in a number of ways, for example

  • Diagnosis itself can be hard-hitting and difficult to accept, absorb, share with others and learn to live with, especially in the current situation. In the information age we live in, it can feel overwhelming to navigate through the mountain of advice and guidance and make decisions that you feel happy with.
  • You may worry about your vulnerability to Covid and have anxiety around vaccine availability and how it might interact with the medication you may be taking.
  • You may experience social isolation in the pandemic and feel exposed and vulnerable due to the condition and treatments you may be receiving, and this can be hard to deal with. Digital ways to remain connected and reduce loneliness can help.
  • Pressures on family life more broadly can exacerbate stress. Many are facing increased pressures on finances due to job losses. Finding practical ways to deal with stress, for example through meditation, might help relieve some of it.

For anyone newly diagnosed

Bearing in mind that advice at the point of diagnosis may not necessarily be welcome while the person takes time to process the news, I would first and foremost offer empathy and understanding. The reality of MS can be tough.

It’s quite common for people at the point of diagnosis to hear lots of ‘cannots’ and the focus on the likely detrimental impact of the condition on the individual’s life. Any advice I would give would focus more on the ‘cans’ and practical things that are within your control. You can take control of certain aspects of your life to help manage the condition, you can look at different options and treatment choices available to you, to help manage your MS, you can reach out to others living with it to share how you feel and seek support. You can live well.

My vision

I am very passionate about the community of people with MS that we serve, so my first priority is to build lasting and meaningful connections. It is vitally important that we develop and grow as an organisation, driven and inspired by the needs of people with MS. This means that we will work hard to enable easier access to the OMS programme for every person with MS, build more and better ways for people to connect with others, further boost our digital engagement and support channels. We will work with other organisations and healthcare providers so that every person diagnosed with MS is given the opportunity to make an informed choice as to their treatment pathway. A holistic lifestyle modification programme has to be one of these choices.

Find out more about OMS at www.overcomingms.org

Want more great interviews, news and advice about living with MS? Subscribe to New Pathways magazine!

Sub button for news stories - NP.jpg