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Real life stories from our community

Read real life stories from some of our community members

Alison Marwick

Alison is passionate about sharing her experiences of Overcoming MS after being diagnosed with relapsing-remitting MS. Alison is an Ambassador in Surrey and is an avid supporter of the charity, raising vital funds to continue to spread the word of Overcoming MS. 

Imagine…

Alison had her first MS episode, in early 2004, followed by another the next year, whilst living in London. The first involved dizziness and the inability to walk in a straight line as well as numbness and tingling on one side of her face. With the second, the right side of her face collapsed and she lost hearing in her right ear.

Both episodes passed and although not formally diagnosed, she was told by medics that multiple sclerosis was highly likely. She was advised to eat healthily and exercise and hopefully nothing would happen for five, 10 or even 15 years.

Alison did heed the advice and bought books about eating healthily and what foods were good for your brain, immune system and central nervous system. She stopped eating red meat and dairy and started eating fish, pulses, vegetables and fruit.

After a year she started exercising and joined a gym. All was good, bar not being able to hear out of her right ear in a crowded environment. There was no permanent damage from either episode and Alison carried on with her busy, highly pressurised senior role in sales. 

Alison did, however, live in fear. She changed job and moved back to her to her hometown of Edinburgh to be near her family. She bought a ground floor flat. Just in case. 

Time passed and she became complacent. She lapsed from healthy eating and in 2011 had a third episode. She had optic neuritis – her left eye had what looked like a smudge across it and she was colour blind. This resulted in the diagnosis of relapsing-remitting multiple sclerosis.

She knew that would be the outcome and wasn’t surprised as there is a hereditary link on her Dad’s side of the family. What did surprise her was how five days later she fell apart. The diagnosis had a huge impact on Alison mentally. Looking back she had been living in denial and pretending all was fine. Her MS plunged her into depression. She was utterly miserable and spent time crying and grieving for the life she was never going to have. 

Her MS felt like a ticking time-bomb. She wondered how on earth other people managed, so called an MS helpline and sobbed down the phone. Everywhere she looked was doom and gloom – how to manage pain, how to cope with incontinence, how to tell family, what wheelchair to consider.  

What she couldn’t find was anything about people like her – who still worked and had an active life. Whilst looking at a MS forum she came across mention of George Jelinek’s book, Overcoming MS. She liked the positive name instantly. Overcoming. She had a look at the website with the same name and bought the book; both she says have changed her life.

Hope…

This was a critical time for Alison; she no longer dabbled with diet but committed to the Overcoming MS plant-based, wholefood diet. This resulted in her losing a stone in weight. She started taking vitamin D3 supplements. The changes in her lifestyle made her feel like every day was a sunny day. Her skin improved and her hair shone. 

“I felt fitter and healthier than I have ever been. I now don’t remember what MS feels like, I just feel a new normal.”

Alison also increased the amount of exercise she was doing and started to manage her stress better. She has since started a new job back in London but recognises the signs and triggers of her stress and has started to meditate to help. 

“Overcoming MS has given me hope, I don’t believe my life is over anymore. I can tell my friends, family and even my new employer about what has happened to me and how I manage my MS because I’m not afraid anymore.”

Alison is passionate about sharing her experiences. She now fundraises for Overcoming MS and has cycled from London to Brussels (with a lot of swearing and weeping along the way!).

Alison is an Overcoming MS ambassador in Surrey where she lives. She has recently organised an inspirational speaker to talk about health awareness and mindfulness at her workplace.

Alison Cycling

Alison Marwick, Surrey 

Autumn 2019

Fran Benison

Former police admin officer Fran now helps at her local MS therapy centre in Dundee. “I feel genuinely alive” – Fran started following the Overcoming MS programme after attending an inspirational Overcoming MS Conference in Edinburgh in 2019.

Imagine…

A member of Tayside Police, Fran considered herself relatively active and at first dismissed her multiple sclerosis (MS) symptoms, putting them down to doing too much.  She exercised regularly, had a busy job working in the CID and liked to, ‘stomp around the office in her high heels.” So when she felt pins and needles in her legs she changed her shoes, ignored the sensations and got on with life for a couple of months.

The tingling feeling gradually started to move up her legs making walking more challenging so much so that, in May 2013, Fran visited her doctor who started tests. Little did she know she would never return to her police job again.  Fran went away on a long holiday weekend when the pain increased to her waist resulting in her temporarily not being able to walk. Her husband Peter took her to A&E in Dundee where more tests were done including a MRI scan and lumbar puncture. Her neurologist confirmed she had Transverse Myelitis (inflammation of the spinal cord) and she was given medication. MS hadn’t crossed her mind at this point, why would it, she was fit and only 52?

She started physiotherapy and had to learn to walk again. She took voluntary redundancy from the police.

In September the same year, returning from a weekend in Inverness she grew very tired and on Tuesday she felt pains in a new place – in her arm, down her right hand side. She phoned her neurologist and went to see her GP and they both apologised and said it was likely she had MS. 

She had wanted to be on her own for her appointment (despite her husband being hugely supportive) and she remembers going to a cafe and ordering a huge mug of tea and an equally oversized chocolate fudge doughnut (the last one she ever ate). Fran felt numb, stunned and couldn’t believe what she had been told. 

She knew nothing about MS. At her next consultant appointment in October 2013, six months after her first symptoms, she was prescribed disease modifying drugs (DMDs). She felt worse. She saw a MS nurse and didn’t ask any questions. She felt angry and frustrated. To Fran, the psychological pain was far worse than any physical pain. 

Hope…

Looking back now, Fran can see that she was perhaps stressed through work, her mum had not been well, her diet wasn’t that great and while her fitness was OK her vitamin D levels were very low.  She went to a local MS therapy centre and tried high dose oxygen therapy a couple of times and found other people to talk with. It was here that she came across the Overcoming MS book but she initially couldn’t be bothered to read it. She had started to wean herself off her prescription drugs and she felt OK. 

Fran’s journey to recovery has been a gradual one.  After another 18 months she gave up dairy and reduced her meat intake. She kept getting drawn to the Overcoming MS charity but hadn’t fully committed to the programme. She attended an Overcoming MS conference in Edinburgh in July 2019, where George Jelinek was speaking. She came out of the day event and thought, “What am I messing about at?!”  She thought the event was fantastic, she met people who were following the Overcoming MS programme and were full of hope. 

Fran then committed to going on a week long retreat, run by Overcoming MS in Somerset. She travelled down with her husband who left her there. They both had some reservations but, “I get shivers when I think about the week. On Monday I wondered what I was doing there and by Friday I had met ‘my tribe’. It was truly life-changing.”

Fran now follows the Overcoming MS programme with passion. She found the plant-based, wholefood diet easy enough to follow, started to run and joined the University Active Living Programme. Her vitamin D levels are now much higher. She has lost weight through eating healthier and exercising regularly and people comment on how well she looks. 

“I genuinely feel so alive; my husband says I am positively glowing.”

Fran still gets some symptoms like numbness in her legs and balance issues but they don’t bother her as much mentally.

“I think through my symptoms. They just aren’t as important as they used to be because I know tomorrow will be another day and I remain positive.”

Fran has become an Overcoming MS Ambassador and helps to organise a support group in Dundee. They use WhatsApp to share and post pictures of recipes, meditation tips, exercise encouragement and the best place to get flaxseed oil! She now works at the local MS therapy centre and her aim is to support others who are newly diagnosed as she knows first hand that it can be an extremely scary time.

Fran Benison story

Fran Benison, 58, Dundee

Autumn 2019

Dr Jonathan White

Jonathan is an Obstetrician and Gynaecologist who lives in Northern Ireland with his wife and children. Jonathan was diagnosed with MS in 2015 and is now a medical advisor and event facilitator for Overcoming MS, supporting others to follow the programme.

Dr. Jonathan White, works at the Causeway Hospital, Coleraine and is a member of the Royal College of Obstetricians & Gynaecologists (MRCOG).

 

He was diagnosed with Relapse Remitting Multiple Sclerosis in 2015 and has been following the Overcoming MS programme ever since. 

Jonathan lives on the north coast of Northern Ireland, is married to Jenny and is father to two lively children. He trained at the University of Glasgow Medical School, graduating in 2008 and has since been practising in his home country. 

He has raised funds for the Overcoming MS charity through 10 km and half-marathon runs and also assists Overcoming MS as a medical advisor and event facilitator. 

Imagine…

Jonathan’s symptoms came completely out of the blue. He was working at a busy antenatal clinic in June 2015 when he noticed what felt like bruising in his left eye. He said it felt like he had been punched. 

He went to the opticians who suggested a change of contact lenses and he carried on with his busy life, with a nagging feeling of uncertainty. 

The second symptoms appeared soon after at a friend’s wedding when it felt like he had multiple mobile phones buzzing in his pockets, and “lightning” down his legs. Having medical insight, he suspected MS straight away and went off to A&E.  He was referred for a MRI scan that confirmed he had lesions in his brain and spinal cord. He was told to take medication, that there was nothing he could do to change it, and to get on with his life.

Hope…

As a doctor, he wanted to know what he could do to help himself, so he looked for research-based information online and quickly found Professor George Jelinek’s book on Amazon. He devoured the contents in 72 hours and knew it made complete sense and was the course of action he was going to take.

Jonathan gave up dairy and meat overnight, which he didn’t find difficult as he had suffered from severe migraines as a teenager and avoiding certain foods like cheese had previously helped. Despite being a doctor, he was not living the healthiest of lifestyles, eating food that is highly processed, high in fat and convenient, largely due to a lack of time. He lost over two and a half stones after switching to a wholefood, plant-based diet with seafood. 

In addition, working in the NHS, his job was highly pressurised, and physically and emotionally demanding.  He found adopting Overcoming MS’s stress reduction advice the most challenging part of the programme, but he has grown to love meditation and finds he really feels it if he misses a day.  “It’s so important to look after yourself in these situations, and there is much more awareness now about mindfulness at work.”

Jonathan made a conscious decision to scale back the pressures in his life. He and his family chose to leave the busy city life and move to the countryside. He continues to work for the NHS, but with no on-call or night shifts, and in a new role that affords him the time and space to feel that he really makes a difference to his patients. He now also has much more time to spend with his family each week. 

Living well with MS

“My life is more balanced now, simpler and liberating. I am four years into my journey, but in many ways it still feels like the beginning.  I feel fitter now and have more energy and passion for life.”

Exercise has also played an important role in Jonathan’s wellness. As a keen cyclist at University, his MS initially resulted in problems with balance so he took up running as an alternative. He has completed a 10K run and half marathon, raising money for Overcoming MS along the way. Never that keen on running, he has now re-discovered his love of cycling and enjoys rides in his beloved Northern Ireland. A sporting challenge he would love to achieve is to cycle the length of the island. Maybe next year!

“I think I am a better doctor now than before my MS diagnosis. I’ve slowed down, I really listen to people and give them more care and attention not just the bare minimum available in the allotted time. I find my job even more satisfying and rewarding.”

Having MS has also rekindled his interest and his skills in researching medical evidence.  He chose to be open about his diagnosis, he didn’t want to carry the burden of not sharing which has resulted in him finding a great kinship within the Overcoming MS community. 

“I still have some bad days but I now recognise triggers when I’m stressed and tired. I know I can overcome these and overall, I think I live really well with my MS.”

Dr Jonathan White

Jonathan White, Northern Ireland

Autumn 2019

Rowan Baker-Smith

Rowan is making the best of life, after a diagnosis of MS rocked her world last year, just as she’d been promoted at work and married her wife Alex. She is now taking part in ultra walking challenges, trying new recipes, meditating regularly and is back at work as a nurse. She is currently planning a trip to travel the world!

Imagine…

 

2018 was a long year, when a lot happened in Rowan’s life. Newly married and aged just 26, she had just been promoted at the hospital she works at on the south coast of England. Her world came to a standstill when she was diagnosed with MS and became too ill to work. 

In July 2018 Rowan was concerned by a constant tingling sensation, vision problems, difficulties walking and chronic fatigue which left her too ill to work. She had numerous tests and was subsequently told by her neurologist that she had MS.

As a nurse, she has seen the debilitating medical effects of MS and was worried about the future. She researched online and found many positive examples of people controlling, managing and living with MS. Armed with a copy of George Jelinek’s book, Overcoming Multiple Sclerosis, she studied the evidence-based seven step recovery programme.

Hope…

With time and dedication, she has now been able to return to work full-time and is fulfilling her goal of upgrading her home.

“I’ve been humbled by the reaction of my support network when I have needed them. I’ve laughed and cried (a lot) but I started 2019 with optimism, health, hope and contentment.”

Rowan completed the 50km London-Brighton Challenge walk in May and is planning to walk the 100km South Coast Challenge next summer, raising money for MS charities

She combines long walks, 5km runs and cardio exercise with eating well. Rowan, already a near vegan, now follows the plant-based, wholefood Overcoming MS diet, and is really enjoying the healthy changes she has made part of her daily life. 

She believes that adopting the programme has made a noticeable difference and in just a couple of months, has significantly improved her fatigue. She enjoys cooking from scratch, trying new recipes, and posting them on Instagram. 

Equally important to Rowan is her spiritual development. Managing MS, on her terms, has shown her that she is able to help herself and remain positive. She attends a yoga class twice a week and gets lots of benefits from watching daily Overcoming MS online meditation videos. A mindfulness calendar, that has a prominent place in Rowan’s kitchen, serves as a good reminder to do some simple daily meditations. For example, while doing the washing up or preparing food.

Rowan feels lucky to have had such support from the NHS and her MS team.

“I wake up every morning grateful that I can now brush my teeth and walk downstairs. In July I couldn’t feed myself or brush my hair and couldn’t walk more than fifty metres, meaning that I had to use a wheelchair to get around. I also had Optic neuritis (inflammation of the optic nerve) which caused changes to my vision.

“I had three relapses in six months putting me in a highly active category, but since adopting Overcoming MS I’ve not experienced any new symptoms – I have come such a long way in a short period of time.

“While others think that I have gone back to normal, nothing could be further from how I feel. Health is a privilege and I now respect my body more. Eating well, exercising, meditating, resting and challenging myself is a fine balance that will take years to master, but the journey has already given me so much insight.”

Rowan also believes that the charity Overcoming MS has helped to provide understanding, hope and has empowered her to take control of her condition. “It really has given me my life back, even with some improvements. The advice, forums and information provided by Overcoming MS have helped me to accept the condition with optimism, alongside the medication options available to me.”

For anyone coming to terms with a diagnosis of MS, Rowan would like to share her view that MS is not the condition it used to be. With huge medical advances in the last 20 years, and with the Overcoming MS programme, I wholly believe that there is a real possibility in stabilising disease progression and living well with MS.”

Rowan Baker-Smith

Rowan Baker-Smith

Autumn 2019

Tim Cobb

Tim Cobb runs his own PR agency in Eastbourne. He initially denied his diagnosis, even to his children, but after four years he came out publicly at a fundraising event to over 150 people. Since following the Overcoming MS programme he has been relapse free.

Imagine…

Tim Cobb was a bit of a fitness nut. He ran with his dog every day, had completed a handful of marathons and was regularly spotted lifting weights in the gym.

So when he nipped in for a sports physio appointment to sort out a sore back, he was stunned when the healthcare advisor said he probably had multiple sclerosis (MS).

A quick online search filled in the blanks in his knowledge. He discovered MS portrayed as a degenerative, debilitating, incurable disease that would probably knock 10 years off his life and see him ending his years in a wheelchair. 

He went into denial. He didn’t talk about it and certainly did not want to tell his three teenage sons. His wife Sue was his rock during a rather bleak time. It was Sue who came across the charity Overcoming MS and bought him George Jelinek’s book that suggested that MS might be overcome.

After a brief glimpse at the book, Tim decided reading it was too much hassle, as was adopting the seven step programme it recommends.  

Tim continued living in denial but MS continued its destructive path. Tim suffered numbness in different parts of his body, stiffness around knee joints and a loss of peripheral vision. He was forced to stop driving for a period of time.

Two relapses later, and his only option appeared to be a lifetime commitment to MS disease modifying drugs. 

Through a series of strange coincidences, he once again found himself looking at the Overcoming MS approach as a way of tackling his condition. Sue encouraged him to give it a try and in reality he had nothing to lose and everything to gain.

Tim overhauled his diet, changed his lifestyle, took up meditation and yoga, something he had never previously entertained! Sue also persuaded a reluctant Tim to attend a week-long Overcoming MS retreat.

Hope…

Fast forward to the present day. Ever since embracing the Overcoming MS pathway, Tim’s health has never been better. Significant lifestyle changes, strong family support, and a healthy diet later, Tim is fighting fit with no relapses to report.

He is back running every day with his dog, has completed a local half marathon and cycles with friends most weekends. Tim describes Overcoming MS as helping him to climb out of a dark hole.

Significantly, he is now open to talk about his illness and equally passionate about passing on the life-changing news that there is a lot people can do to slow down or even halt the progress of MS.  

Deciding whether to disclose your MS diagnosis is an incredibly personal decision, and for the first few years after his MS diagnosis Tim simply didn’t want to talk about it. As Managing Director of an award-winning communications company, Tim certainly did not want his business community to know his news. When four years after his diagnosis, he finally chose to share his news, it was to a room of 155 business leaders, at an Overcoming MS fundraising lunch he was hosting at the Amex football stadium in Brighton.

Each of the attendees gave him their support and confirmed that his diagnosis changed nothing. Vital to Tim is reaching the people with MS who have not yet discovered Overcoming MS, and communicating to them its message of hope. Tim has helped raise significant funds for the charity.

Tim Cobb

Tim Cobb, Eastbourne

Autumn 2019

Yvette Sargood

Yvette Sargood, from Ascot, is 54 and has been following the Overcoming MS program since 2014. She is an Ambassador in Berkshire and mindfulness facilitator at the charity’s events.

Imagine…

Yvette was diagnosed with optic neuritis at 23, with frightening loss of vision in her right eye, and multiple sclerosis (MS) was not mentioned to her then as a possible cause. She was given steroids to manage the symptoms and over the next 20 years had several relapses of optic neuritis affecting both eyes.  As the relapses were separated by several years, Yvette was relieved to be able to avoid a diagnosis of MS.  She kept her worries about MS to herself, exhausting at times, and did not even share them with close family and friends.

She carried on with her life, children, travel and a successful global career in HR. In 2012 without warning her leg collapsed whilst out walking; again, this quickly recovered. However over the next few years her right leg started to get stiffer, she developed foot drop and also experienced weakness in her right arm and hand. Yvette realised she needed to face up to what was happening, knowing that things were changing and that the symptoms were slowly progressing and not going away as before.

In 2014 while researching online Yvette came across the Overcoming MS website and George Jelinek’s book. She downloaded a copy and stayed up reading. The book resonated on many levels, especially the science behind it. Together with her husband Jurgen they both became fish eating vegans from day one. Yvette describes Jurgen as her ‘number one cheerleader’ because she could not have made any of these changes without his unwavering support.  

A few weeks later, they attended an Overcoming MS meeting in Birmingham and for the first time openly shared their experiences of living with MS with people who understood.  They discovered that there were other people ‘just like them’, struggling with the same challenges of the uncertainty and unpredictability of the condition. Surrounded by a room full of people looking to take back some control and take positive action was very empowering for them both.  

Yvette attended an Overcoming MS week-long retreat in London later that year which not only solidified her awareness and understanding of the Overcoming MS Program but helped her take steps towards accepting that she had MS, and that it doesn’t need to define her. She describes this as “a very important hurdle”. Her formal diagnosis finally came in 2016 and she now combines following the Overcoming MS Program with Disease Modifying Drugs and medication for her symptoms.

Hope…

Yvette found overhauling her diet relatively easy and lost lots of weight at the start due to lowering her saturated fat intake. Yvette and her husband have learnt to eat more! The hardest challenge for Yvette was cutting out chocolate! Yvette feels that changing her diet has meant she has more energy and less fatigue. 

Yvette has a disciplined exercise regime throughout the week including walking, cycling on a stationary bike, swimming and pilates. She set herself a challenge at the end of last year to walk six kilometres by September, which she achieved, with the help of her carbon fibre Ankle Foot Orthoses (AFO) to provide lift for the foot drop and greater stability. This is further than she has managed in years, which her physio describes as a “200% increase in performance.” The next challenge for Yvette is to build up to swimming a mile, only 60 lengths more to go!  

“I find setting a goal, having bags of determination and discipline and combining all the different strands of the Overcoming MS Program, have really helped me improve my overall fitness and wellbeing.”

Yvette did not practice mindfulness before starting the Overcoming MS Program, but was so inspired by the benefits she found personally she wanted to learn to teach others.  She is now a qualified mindfulness teacher, and is completing a part time MSc in Mindfulness at the University of Exeter.  

“Mindfulness for me has been the cornerstone of my MS journey. Of course there’s the science behind it, less stress equates to less relapses and exacerbation of symptoms for people with MS.  But I’ve learnt over time through my mindfulness practice, to accept what is happening to me.  That doesn’t mean I have to like it! I just no longer beat myself up for not being able to do what I used to do.

“In fact I’d say I am now more fulfilled than ever before in my life. I focus on helping others make mindful choices about how they live and work, as I have done.  I teach mindfulness to people with MS and integrate mindfulness where appropriate into my work as an Executive Coach with leaders in corporate organisations.  The future is uncertain, and who knows what tomorrow will bring but with the Overcoming MS Program I know I’m doing everything in my power to give myself the best chance of having a great life.”

Yvette Sargood

Yvette Sargood

Autumn 2019

Glossary:

  • Optic neuritis – Optic neuritis refers to inflammation that damages the optic nerve – a bundle of nerve fibres than transmit communication from the eye to the brain. It is commonly caused by MS. Optic neuritis is often one of the first signs of MS. 
  • Relapse-remitting MS (RRMS) – A type of MS where there are periods of remission and recovery punctuated by attacks (relapses). RRMS is a misnomer, as damage continues between attacks during periods of so-called remission, unless the disease is stabilized.
  • Overcoming MS Ambassador – Overcoming MS Ambassadors serve as regional coordinators, offering advice and encouragement as people start the Overcoming MS program.
  • Lumbar puncture – A procedure in which a thin needle is inserted between the bones in your lower spine, used when diagnosing MS. 
  • Transverse Myelitis – an inflammation of both sides of one section of the spinal cord. This neurological disorder often damages the insulating material covering nerve cell fibers (myelin).
  • Disease Modifying Drugs (DMDs) – Disease-modifying therapies have been shown in clinical trials to modify the course of MS.
  • Professor George Jelinek – a medical doctor who was diagnosed with MS and developed the Overcoming MS 7-Step Recovery Programme.
  • MS fatigue – one of the most common MS symptoms, it is an extreme form of tiredness, one which can be debilitating and overwhelming.
  • Vision problems – caused by MS can vary and can be caused by lack of coordination in the eye muscle or damage to the optic nerve. 
  • Tingling – Abnormal sensations of numbness, pins and needles and tingling are common in MS, and are part of a group of symptoms called paraesthesia.
  • Highly Active (HA) – used to describe disease activity, not ‘type’ of MS. There is no precise agreed definition but includes frequent relapses with incomplete recovery, and/or high increase in lesions on MRI, faster loss of function after onset.
  • Steroids – Steroids have been used for MS relapses for many years. Most neurologists prescribe them for acute relapses in people with relapsing-remitting MS. The evidence seems clear that they improve recovery time from individual relapses.
  • Foot drop – Condition of weakness in the muscles of the leg caused by poor nerve conduction, which interferes with a person’s ability to extend the ankle and walk with a normal pattern. The toes touch the ground before the heel, causing the person to trip or lose balance.