Overcoming Multiple Sclerosis Handbook

Roadmap to Good Health

George Jelinek MD, Sandra Neate, Michelle O'Donoghue

• Verlag: Allen & Unwin
• Jahr: 2022
• ISBN:
  9781838953089
• Thema: Développement personnel
• Thema: Amélioration personnelle

'If you or someone that you love is impacted by MS this book is a must read.' - Dr Aaron Boster, The Boster Center for Multiple Sclerosis, Columbus, Ohio 'This highly recommended book highlights the importance of a holistic approach to MS management.' - Professor Richard Nicholas, Imperial College LondonA long, healthy, happy life is possible after a diagnosis of multiple sclerosis. Around the world, thousands of people are living active and fulfilling lives on the Overcoming Multiple Sclerosis Program.The Overcoming Multiple Sclerosis Handbook explains what MS is, and outlines the scientifically credible and evidence-based 7 step self-management program originally devised by Professor George Jelinek. It covers all aspects of living on the program, from first diagnosis to later life, with chapters from medical specialists and other experts on choosing your healthcare team, improving resilience, work, pregnancy and progressive MS. The book taps into the wealth of knowledge and experience in the community of people following the Overcoming Multiple Sclerosis Program, with personal stories from across the world.If you have recently been diagnosed with MS, if you have been living with MS for years, or if you have a family member with MS, the Overcoming Multiple Sclerosis Handbook is your best companion. It is also an invaluable resource for doctors treating people with MS.

Part 1

The lay of the land

1

Understanding
multiple sclerosis

Dr Brandon Beaber

Seek help and find your own personal path through what seems like a wilderness; but it’s not, there are bluebells to be found in the fog.

Christine Nolan, Belmont, Australia, OMSer

She has a confident look as though her time might be better spent outside my office. The tingling in her left arm barely lasted a week and didn’t impede a single spin class or Zoom meeting. She’s twenty-four, fit, worldly and ambitious—the owner/operator of a search engine optimisation consulting business. She’s been everywhere, knows people in high places, and you couldn’t guess her ethnicity after five tries. She boasts coiled hair professionally dyed with blond streaks, a Louis Vuitton handbag, and clothes that must cost more than my entire wardrobe. She is the paragon of millennial money, both street and book smart with the right balance of entrepreneurial risk-taking spirit and seventy-hour-a-week discipline.

Onyeka (her name and some details of her life have been changed for privacy) shifts her countenance when I show her the MRI scans (Figures 1.1, 1.2).

She queries: ‘How could a symptom so brief and trivial look terrifying? Is that really my MRI? What is this mysterious illness, and what will happen to me?’

Multiple sclerosis (MS) may invoke negative imagery for some of those unfamiliar with the disease: they think of wheelchairs and nursing homes. But Onyeka is typical of the patients I see. The trouble with MS is the fear and uncertainty about the future it causes. Though I desperately want to, I can’t give her a prediction of what course her MS will take, a timeline or a guarantee. Onyeka is not the type to wallow in despair, and she hits me with a laundry list of questions and an interrogating tone I might resent if the circumstances were different. She is looking for what psychologists call the ‘internal locus of control’ and wants to know what she can do to better her situation. Given you are reading this, I suspect you have a similar mindset.

Figure 1.1: An axial T2 FLAIR MRI scan of Onyeka’s brain. MS lesions are the small white areas flagged with arrows.

Figure 1.2: A sagittal T2 STIR MRI scan of Onyeka’s cervical spine. The MS lesions are flagged with arrows.

Some time ago, I set out to read every book about lifestyle and MS, determined to best them all by researching and writing my own manuscript. It was to be inspired by science rather than anecdotes, more up-to-date and evidence-based than anything before. However, when I read Overcoming Multiple Sclerosis by Professor Jelinek, I concluded I had been beaten to the punch, and as far as I can tell, his recommendations reflect the best available evidence, so I am following the old idiom: ‘If you can’t beat ’em, join ’em’. I am honoured to introduce the roadmap provided by this handbook to help you face MS with courage, conviction and wisdom.

What is MS?

The purpose of this book is to put into context the role of lifestyle in the genesis and treatment of MS, but we must begin with a foundation of general knowledge. MS is an interesting and complex disease, so consider this a brief overview and framework for future chapters. The disease is believed to affect over 25,000 Australians,¹ nearly one million Americans² and several million people worldwide. The lifetime risk of MS in developed countries with high prevalence is about one in 350 or ~0.3 per cent, which has been rising significantly in recent decades.

MS was first formally described by the French neurologist Jean-Martin Charcot in 1868, and the last century and a half has brought some understanding to this mysterious illness, the first recording of whose symptoms may have been as early as the fourteenth century, as manifested in Lidwina the Virgin (1380–1433), the Catholic patron saint of ice skating. The term ‘multiple sclerosis’ refers to hardened (or ‘sclerotic’) scars (plaques) in the brain, optic nerves and spinal cord. When we look under the microscope during a biopsy or autopsy, we primarily see damage to the myelin, a fatty sheath that protects nerve fibres (Figure 1.3).

The nervous system is essentially the organ of communication within the body, so when myelin is injured by what is currently thought to be an autoimmune process (i.e., when the immune system attacks our own bodily tissues), the speed and integrity of information transmission along nerves are hindered. This gives rise to the myriad symptoms MS can cause: vision loss, numbness, weakness, imbalance, tremor, problems with bladder and sexual function, pain, fatigue, vertigo, double vision, cognitive changes, and so forth.

MRI scans are helpful for diagnosis and monitoring of MS because they allow us to see lesions (the visible areas of damaged nerves) in a living person. MS lesions appear bright on what is termed the T2 sequences of the MRI scan, and with permanent nerve fibre loss, they may be dark on T1 sequences (‘black holes’). An active lesion causes a temporary breakdown of the blood-brain-barrier (the normal membrane separating the brain from the blood), and gadolinium contrast dye given before the scan can seep into the lesion, causing it to ‘enhance’ (appear brighter). Partly as a result of this damage, the brain can atrophy (shrink) in MS by a rate of ~0.5–1.35 per cent per year.³ We monitor MS with routine exams and periodic MRI scans beca...