ms voice june 2011

June 2011voice

Mind Body Spirit

CCSVI Buffalo University study releases results on the relationship between MS and CCSVI Research, page 9

Everest Marathon Lynne begins training for the highest marathon in the world raising money for Otago MS Society Regional Voices, page 6

Mind-body connectionCharlotte Hinksman tells us why understanding the mind-body connection can be better for our health 0

Yoga & MS Page 26

Understanding thebrain-body dialogue

Page 20

Issue 34 June 2011

Issue 34 June 2011

Contents

Crock’s Chronicle Melanie tells us how to shake, rattle and roll with the punches

Regional Voices Latest local news and events

Research A selection of recent research into emerging treatments and therapies

Mind Body Connection Charlotte Hinksman tells us why understanding the mind-body connection can be better for our health

Dine@Mate’s Rates A new fundraising project coming soon

Meditation New research indicates that meditation many delay the process of aging

DL Newman Susan tells us how her scholarship changed her life

Yoga of MS The origin of Yoga and how it may help MS symptoms

MS & Family How families are affected by a diagnosis of MS and how we can adapt to change

5

6

8

10

17

20

24

26

30

Research NewsLatest research into treatments and therapies

Meditation Understanding of the brain-body dialogue

Family & MS Changing relationships

Features

voice

Hi all and welcome to the June issue of the Voice.

2011 has heralded a flurry of fundraising activity for MSNZ. After the recent tragic events on the West Coast and in Christchurch, we have realised that to continue our services we have to explore alternative means of funding. MSNZ commits to generating this funding ourselves – we will not use an external agency.

Our first event of the year is ‘Dine @ Mate’s Rates’ – you’ll find more information inside – and we’d love you to get together with your nearest and dearest in aid of this fantastic event. With over $20,000 worth of donated prizes to win – including our top prize of a Kitchen Things shopping spree worth $10,000 - there’s no better time to have a few friends over for tea! Plus, a good percentage of funds generated in your area will return to your regional societies. You can register at www.msnz.org.nz.

We have also recently restructured our society to facilitate better

communications and provision of services by ‘clustering’ regional societies to enable them to work more closely and to resource and information share. Your regional society won’t change – just the way we work behind the scenes to help us to provide better for you.

So with the cooler winter months already upon us, make sure you all stay wrapped up out of the cold and rain and for those of you joining in with ‘Dine @ Mate’s Rates’ – good luck!

‘Til next time...

Rosie Gallagher

NATIONAL DIRECTOR

Rosie Gallagher

Multiple Sclerosis Society of New ZealandPO Box 2627, Wellington, 6140 NEW ZEALANDPhone: 0800 MS LINE (0800 675 463) or +64 4 499 4677 [email protected]/mssnz

The MS Voice Magazine is collated, produced, designed and prepared by Daniel Melbye. It is written with the assistance of submissions.If you would like to share your ideas or contribute an article to MS Voice please send submissions to [email protected]

Disclaimer: Information and articles contained in MS Voice are intended to provide useful and accurate information of a general nature for the reader but are not intended to be a substitute for legal or medical advice. Multiple Sclerosis Society of New Zealand Inc is not recommending medical or legal advice and readers must seek their own medical or legal advice as may be appropriate.

Crock’s Chronicles

My sympathies go out to the Christchurch families dealing with grief, loss and financial hardship after February 22nd. For the rest of us looking on through the camera lens, the mere thought of going without running water, flushing toilets and power in our homes seems inconceivable enough considering our usual standard of living without the continuing after-shocks jangling the nerves.

At the risk of being paranoid or perhaps just preparedness my pantry is now stocked with a supply of filled water containers, food we can eat without the need for cooking, a transistor radio, a plug-in phone, extra batteries and torches. It’s the survival kit that civil defence has encouraged families to have on hand for years and now we know why. “It can’t hurt but it might help.” (I’ve passed on getting the gas Primus but I’d probably blow myself up now trying to use it!) All this has nothing specifically to do with MS but not everything has to in life.

The Christchurch earthquake rattled more than windows and foundations in the Canterbury region, it exposed and increased our vulnerability and sustainability as a nation. The shaky Isles as we are known can now equally be referred to in regard to our financial inability to balance the books, and not just those clinging to the shelves in Christchurch’s bookcases. We were going down the metaphorical toilet long before the quake hit. In the months and years to come the sound of money flushing in the Canterbury rebuild will be deafening.

While it’s impossible to ignore the dire state of the New Zealand economy, the flow-on effects for those dependent upon the health and social development sectors

really worries me. Those residing at the bottom of the economic food chain are becoming more and more marginalised by circumstances outside of their control. I recently heard the Prime Minister state that “at least unlike other countries we are not looking to reduce benefit payments.” This is encouraging for as long as it lasts but insidiously confirms an international precedent that one day heaven forbid may be considered acceptable here in God’s own.

I try hard to be a realist when it comes to money. Supermarket shopping is a prime example of the need to count the pennies and eat accordingly but as a result our diet isn’t as varied as it used to be. The same is true for New Zealand and I accept people aren’t always going to like the decisions our politicians make. Nevertheless, the day we lose sight of the value of our people (and the value that isn’t represented on a balance sheet) is the day we lose our nation’s soul.

Melanie Trevethick tells us how to shake, rattle and roll with the punches

ms. voice June 2011

“We should be immensely proud of our Kiwi fighting spirit and resilience when things get tough”

Lynne, a physiotherapist from Cairnmuir Physiotherapy in Cromwell, has decided to fundraise for Otago Multiple Sclerosis Society by participating in the biennial Everest Marathon.

The Everest Marathon is the highest marathon in the world. Located at Gorak Shep 5184m (17,000 feet), the last hut before Everest Base Camp on the Nepalese side of Everest. The marathon finishes at the Sherpa town of Namche Bazaar at 3446m (11,300 feet) and the course is a measured 42 km (26.2 miles) over rough mountain trails.

To acclimatise naturally to the high altitude all runners join together for a 25 day period in Nepal, during which there is an opportunity to enjoy the capital, Kathmandu, before beginning the 15 day trek to the start line of one the most grueling races in the world.

We are very grateful to Lynne for this amazing support and we look forward to working alongside Lynne in her preparations for this event.

Support this incredible challenge by following her progress on www.msotago.org.nz. For those who want to support this audacious challenge with a donation Lynne has set up a fundraising page at www.givealittle.com (search Lynne Clay).

Go Lynne – we are with you all the way!

50% of all sponsorship she raises will go to Otago Multiple Sclerosis Society. The other 50% goes to Nepalese Charities for use mainly in the areas of education and health.

Everest Marathon

Regional Voice

ms. voice June 2011

“Many do not even make it to the start line.”

The Entertainment™ Book is a local restaurant and activity guide that provides valuable 25% to 50% off and 2-for-1 offers from many of the finest restaurants, activities and hotels with books available for Auckland, Wellington, Christchurch, Dunedin, and Waikato/Bay of Plenty. Entertainment™ Books are available to purhase from the MS Society by emailing [email protected]

Local News & Events

ms. voice June 2011

Picnic at Pollard Park hosted by Marborough MS Society

Southland MS Society bid farewell to Diane O’Rorke who resigned as a committee member. They celebrated morning tea in recognition of Diane’s 25years of dedication to the Southland MS Society as a Committee Member. Diane has resigned from our committee but will remain as a valued volunteer.

Southland President Elizabeth Kelly presented Diane with a Certificate of Appreciation from MSNZ in recognition of her dedication and spirit as an exceptional person in the MS Community.

Thank you Diane, your support has been greatly appreciated and we are thrilled that you will remain as a dedicated volunteer within our society.

Fond Farewells

The inaugural Paul Hunter Rosebowl Sports Challenge was held in Waipukurau 31st March. This event included 3 sports challenges- Boccia, Indoor Bowls and Tenpin Bowling. A team of 11 went down to Waipukurau to represent Hawkes Bay Multiple Sclerosis. It was a great day with over 82 people participating. MS

Hawke’s Bay played really well and were very competitive in all their games. With only 1 loss and 1 draw, throughout the competition.

MS Hawke’s Bay were the overall winners on the day and the first team to have their name engraved on Paul Hunter Rosebowl trophy.The inaugural Paul Hunter Rosebowl Sports Challenge was held in Waipukurau 31st March. This event

included 3 sports challenges- Boccia, Indoor Bowls and Tenpin Bowling. A team of 11 went down to Waipukurau to represent Hawkes Bay Multiple Sclerosis. It was a great day with over 82 people participating. MS Hawke’s Bay played really well and were very competitive in all their games. With only 1 loss and 1 draw, throughout the competition. MS Hawke’s Bay were the overall winners on the day and the first team to have their name engraved on Paul Hunter Rosebowl trophy.

Lenore Mossman, Jenny Durry, Malcolm Corbett, John Matheson, Wendy Foulds, Catriona Green, Merie Kenyon, Chris Binnie, Peter Hall, Robyn Coyle, Duncan Paterson.

Duncan Paterson prepares for a shot at Boccia.

The inaugural Paul Hunter Rosebowl Sports Challenge was held in Waipukurau 31st March. This event included 3 sports challenges- Boccia, Indoor Bowls and Tenpin Bowling. A team of 11 went down to Waipukurau to represent Hawkes Bay Multiple Sclerosis. It was a great day with over 82 people participating. MS Hawke’s Bay played really well and were very competitive in all their games. With only 1 loss and 1 draw, throughout the competition. MS Hawke’s Bay were the overall winners on the day and the first team to have their name engraved on Paul Hunter Rosebowl trophy.

Lenore Mossman, Jenny Durry, Malcolm Corbett, John Matheson, Wendy Foulds, Catriona Green, Merie Kenyon, Chris Binnie, Peter Hall, Robyn Coyle, Duncan Paterson.

Duncan Paterson prepares for a shot at Boccia.

Hunter Rosebowl Sports Challenge

years worth of English hospital admissions data, which looked at people admitted to hospital with MS and glandular fever, and compared it to data from NASA on UV rays in England.

Professor George Ebers, from the University of Oxford, said: “It’s possible that vitamin D[which is made when the skin is exposed to sunlight] deficiency may lead to an abnormal response to the Epstein-Barr virus.

“More research should be done on whether increasing UVB exposure or using vitamin D supplements and possible treatments or vaccines for the Epstein-Barr virus could lead to fewer cases of MS.”

Low levels of sunlight coupled with glandular

fever could increase the risk of developing multiple sclerosis (MS), say researchers.

Vitamin D deficiency has been a subject of much research and is thought to play a key role in the development of MS. However this study suggests that exposure to sunlight and the Epstein Barr virus in combination are key factors in the development of MS.

The study, in Neurology, suggested that low levels of sunlight could affect how the body responds to infection. Professor George Ebers led the study from the University of Oxford and used seven

Virus and low sunlight raises multiple sclerosis riskSource: Neurology, University of Oxford

ResearchNews

ms. voice June 2011

Protein could improve understanding of MS Scientists say they have discovered a protein which may help them to understand neurodegenerative disorders such as epilepsy, dementia, MS and stroke

The scientists at the University of Edinburgh discovered that the protein Nfasc186 is crucial for maintaining the health and function of the segment of nerve fibres - called the axon initial segment (AIS) - that controls transmission of messages within the brain.

Professor Peter Brophy, director of the University of Edinburgh’s Centre for Neuroregeneration, said: “Knowing more about how signals in the brain work will help us better understand neurodegenerative disorders and why, when these illnesses strike, the brain can no longer send signals to parts of the body.”

CCSVIUniversity of Buffalo April 13, 2011

A just released study on the relationship between MS and chronic cerebrospinal venous insufficiency (CCSVI), a narrowing of the extracranial veins that restricts the normal outflow of blood from the brain, found that CCSVI may be a result of MS, not a cause.

CCSVI is a complex vascular condition discovered and described by Paolo Zamboni, MD, from Italy’s University of Ferrara. It is characterized by narrowing of vessels draining blood from the cranium. Zamboni hypothesized that this

narrowing restricts the normal outflow of blood from the brain, resulting in alterations in the blood flow patterns within the brain that eventually cause injury to brain tissue and degeneration of neurons, leading to MS.

Researchers at Buffalo University found that only 56.1 percent of MS patients had CCSVI. While this may suggest an association between MS and CCSVI, 22.7 percent of healthy controls involved in the study, also presented with CCSVI.

Zivadinov, MD, PhD, associate professor of neurology in the UB School of Medicine and Biomedical

Sciences and president of the International Society for Neurovascular Disease says:

“These findings indicate that CCSVI does not have a primary role in causing MS”.

“The higher prevalence of CCSVI in progressive MS patients suggests that CCSVI may be a consequence, rather than a cause, of MS,” says Bianca Weinstock-Guttman, MD, co-principal investigator of the study and UB professor of neurology. Therefore, the possibility that CCSVI may be a consequence of MS progression cannot be excluded and should be further investigated.

Research News

The role of vitamin D in Multiple Sclerosis has been the focus of ongoing research. A recent study investigated whether vitamin D levels are linked to depression and fatigue in MS.

Fifty-nine people with MS took part in the study and were assessed for levels of depression and fatigue.

Blood samples were used to measure levels of vitamin D. Analysis of the results showed that people who had lower levels of vitamin D were more likely to show symptoms of depression. There was no association between fatigue and levels of vitamin D.

The authors suggest that future studies on vitamin

D in the MS population should further investigate the potential link between lower levels of vitamin D and susceptibility to depression.

Vitamin D status in patients with MS is negatively correlated with depression, but not with fatigue. Knippenberg S, Bol Y, Damoiseaux J, et al. Acta Neurol Scand 2010.

Low vitamin D levels linked to depression in MS

Research News

ms. voice June 2011

Neuro-linguistic programming (NLP) is a therapy which uses the brain’s natural processes to make changes in the way we think, feel and behave and includes physical health. This article will look specifically at how your brain and body are connected and what changes you can make to improve your physical health.

“Mind over matter” – we have all heard it but do we actually believe that your mind and body are connected and that how you operate your mind has an effect over your body and your health? In my experience working with clients one on one over the last half decade is that no, not really: in fact most people need to have this specifically proved to them. It is not surprising considering the dominance of medial model thinking, which isolates the physical from the mental and emotional. Thankfully, these old beliefs are changing with increasing numbers of medical practitioners openly endorsing “alternative” therapies.

The Brain and The Body

The mind-body connection is not just a concept: you have a brain, which sits in, and is protected by, your skull. It has a brain-stem, which connects to the spinal cord.

Every single cell in the human body is controlled by this Central Nervous System (CNS). Your CNS coordinates all activity in the body. There is therefore, at any given moment, a continuous stream of communication and feedback within the CNS between brain and body. This means that nothing in your system is fixed permanently or ever a static “thing “ – it’s always a continuous process. Any process can be influenced by any number of variables at any given moment, which can change the outcome.

Fear and StressI could give many examples of how certain emotions and thinking styles impact your

physiology and I am choosing the biggies – fear and stress – for three reasons: 1) it’s well known both in the medical and alternative health fields that stress causes and/or prolongs a significant number of physical health issues, 2) feeling fearful of the future is a common problem for those with an MS diagnosis, and 3) although they are created slightly differently on mental level, on a physical level they are part of one process. Therefore learning how to manage either of them will have multiple positive effects.

Mind Body connection

by Charlotte Hinksman

Understanding the mind-body connection

can be better for our health

ms. voice June 2011

As a human being, you have got an inbuilt survival instinct – your fight or flight response. Here is how it worked for our ancestors: as a hunter-gatherer you came up against a life-threatening threat - a tiger sitting outside your hut. Your adrenal glands, which sit on top of your kidneys, released a surge of adrenaline (one of the main hormones and neurotransmitters) into the body. This increased your heart rate and flow of oxygen and blood into the muscles. It eliminated waste stored in your large intestine, closing off your

digestive system, so that you have the energy and lightness to either fight the threat or get quickly away (flight). This is why we can’t eat and need to go to the toilet when we are anxious.

The next step in this process is the adrenal glands releasing another hormone - cortisol - our stress hormone. Cortisol spikes your blood sugar to maintain the high energy required to fight or fly and would be naturally and healthily burnt off in this process.

Once the life-threatening

threat is dealt with and with no more present danger to deal with, your body can go back into its normal relaxed state, where it can replenish and revitalise itself.

The Implications A perfect system design for the purpose of survival - absolutely necessary and useful - back then! Here are the serious problems it can cause in modern living:

We don’t have the same life-threatening present dangers to respond to, but

Above: Charlotte Hinksman is a certified master practitioner and life coach of NLP.

ms. voice June 2011

ms.

we will always have this inbuilt survival response.

We therefore generate fear in response to things that don’t actually threaten our survival - yet the physiological impact is the same. Your body doesn’t know if it is a tiger outside your hut, a presentation or a deadline at work, it just wants to keep you safe from “threat”.

We therefore have this response to varying degrees of intensity and to varying outside stimulus - ranging from nervousness in the tummy, worry, general anxiety, phobias, to panic attacks that wake you up in the middle of the night.

Your body responds to imagined fears. When we just picture something bad or unpleasant happening - it could be that you think of the “impending crash” of the plane you are about to get on, missing

that deadline at work next week, or being in a wheelchair in 10 years time - your body generates the same fear response as if those things were actually happening

right now -

even though they are not and may never.

Prolonged release of cortisol suppresses your immune system and decreases bone density. Spiked blood sugar, if not burned off as intended, has nowhere else to go but back into your body where it gets stored as fat - visceral fat (known as “belly fat”) - the most unhealthy place to store it. This spike and drop in blood sugar is also why you get tired after an adrenaline rush or a prolonged period of stress.

Fear and stress are designed for short-term use only! They are designed to fully optimise your body in order to fight or fly, and does this at the cost of essential long-term functioning like strengthening your immune system.

Your body can get away with this in the short-term. However, In modern living with a perception of more to be afraid of or stressed about, we are not effectively dealing with these “threats” or “getting away” from them - the stimulus is either constant (deadlines at work) or there is multiple stimuli (deadlines at work, a phobia of frogs, an imagined unpleasant future). This means we are not successfully fighting or flying and then relaxing

again as your body believes it is in a constant state of mortal danger.

Your physiology is simply not designed for this and unable to sustain this short-term survival response in the long term. It suffers under the strain - your health gets sick.

What can you do, now?

How many times have we heard “manage your stress” or “you need to learn to relax”? It is one of the first things a doctor will say and there are countless research studies proving that the ability to relax the mind and the body significantly improves physical health outcomes. Now you understand why! The question is: How do you actually do that? I hope to help you:

Although in the moment threats where flight or fight is necessary still do exist (footsteps behind you down a dark alley, living in a war zone) they are rare for most of us. Most fear therefore will be imagined

1. Checking the

Fear Reality

2. Managing your response

ms. voice March

fear or stuff you don’t need to be afraid of. Get better at noticing it and catching it before it escalates:

When you are having an imagined fear response, in that moment ask yourself:

Is this real?

Is this happening now?

Has this happened yet?

Is there a problem now?

Get savvy about your stress triggers. What are these external stimuli that cause an anxiety or stress response in you? Once you know, you can begin to reduce the external triggers and manage your response better to those that remain in your life.

When you notice a stress response in your body, no matter where it is on the scale of intensity, write down:

The situation: running late..

How it felt: heart rate up, tight in chest..

What thoughts you were having at the time: why do I always do this?

What you would prefer: be calm realising there is nothing I can do.

Your digestion plays a very important role in your health: if it is not functioning efficiently then you are not able to extract the nutrients from your food and nurture your body. The fear and stress response in your body is directly connected to your digestion. Taking care here will help with everything:

a) If you are stressed - don’t eat! And never eat in a rush. If you do, you are asking your digestion to do two conflicting functions! Always calm down first.

b) The breakdown of your food – ultimately determining how well the nutrients get extracted and the waste excreted – starts in your mouth. Your saliva contains enzymes which begin to break down the food particles making the job easier on your stomach and small intestine. This is why you need to slow

down and chew properly. You will taste your food more, and you will get fuller quicker.

Yes, I know! We all know it. And now you know physically why its important. The more you can be relaxed, the more you are in your body’s natural state where you are teaching it that it is safe and out of danger. It knows then it can work on all of those long term health processes like an optimal immune system and healthy sleep. Apart from the positive physical health outcomes, there is also the pleasantness of being in a relaxed state. If you are relaxed, you cannot be fearful or anxious or stressed at the same

2. Managing your response

to external stressors

3. Eating and

Digesting 4. Learn to Relax

a.

b.

time, it is not neurologically possible. You choose, then:

Breathing properly

Yoga

Pilates

Meditation

Mindfulness

Self-hypnosis

Any activity if you know you are an “active relaxer” (i.e. you have to be “doing” something in order to relax) for some people this is physical exercise like swimming or running, for others it is knitting or art

work. Find one that you know works for you where you can feel yourself relax physically.

Knowing what is good for you, and actually doing it are two different things: we know from research that the feeling of happiness is associated strongly with a specific area of the brain: the left prefrontal cortex. This area is associated with planning, goal setting and achievement. When people feel in control about the direction of their lives and their outcomes, they function better. I encourage you to begin believing that your health is much more in

your control by sending the message to your body that says: “I love you and I want you to be well”.

NB: Please follow this advice in conjunction with professional medical guidance.

About CharlotteCharlotte Hinksman is a certified master practitioner and life coach of NLP. She has a private practice in central Wellington. More information can be found at www.charlottehinksman.com, chinksman.blogspot.com or at www.nzanlp.org.

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Meditation can be defined as a state of consciousness characterized by stillness and inner calm. It differs from deep sleep or relaxation in that it involves active mental effort rather than total rest. Teaching yourself how to relax your mind and release it from the stress of thought for a short period each day creates a state in which to relieve stress and feel physical and mental calm.

There are many kinds of meditation, including transcendental meditation, in which you focus on a repetitive mantra, and compassion meditation, which involves extending feelings of love and kindness to fellow living beings. One of the most studied practices is based on the Buddhist concept of mindfulness, or being aware of your own thoughts and surroundings. Buddhists believe it alleviates suffering by making you less caught up in everyday

stresses – helping you to appreciate the present instead of continually worrying about the past or planning for the future.

Meditation teaches us how to manage stress and in turn enhances our overall physical health and emotional well-being. During meditation, the overactive mind is calmed and turned inward. Meditation soothes the nervous system, balances the right and left hemispheres of the brain, centers attention, gives perspective and clarity, improves the powers of concentration, improves memory, improves confidence, gives a sense of purpose, frees the spirit, and builds a state of calm and relaxation.

When we experience negative feelings we can often become trapped inside this experience. Our thoughts begin to dwell on negative memories

or sensations, which in turn makes us feel worse. Meditation enables us to move beyond this reactive loop by detaching ourselves from troubling thoughts and experiences.

To be mindful is to be fully awake and aware of what is happening as it is happening, without thinking about the experience or having any emotional reaction to the experience. Through this process we become subjective observers of ourselves allowing us to step outside of the experience or feelings. This allows us to respond

Mindful MeditationUnderstanding the brain-body dialogue

ms. voice June 2011

critically and investigate our thoughts, reactions and feelings and through this understand our situation better.

Small trials have suggested that meditation creates more than spiritual calm. Reported physical effects include lowering blood pressure, helping psoriasis to heal, and boosting the

immune response in vaccine recipients and cancer patients. In a pilot study in 2008, Willem Kuyken, head of the Mood Disorders Centre at Exeter University, showed that mindfulness meditation was more effective than drug treatment in preventing relapse in patients with recurrent depression. Later in 2009, David Creswell of Carnegie Mellon University in Pittsburgh found that it slowed disease progression in patients with HIV.

At the University of Basel Hospital in Switzerland participants in a research

7 STEPSBREATHE DEEPLY:

Focus your eyes, gazing softly into the middle distance. Take five deep, audible breaths, breathing in through the nose and out through the mouth. On the last exhalation, allow your eyes to close.

RELAX:

Take a few moments to settle your body. Gently observe your posture, and notice the sensations where your body touches the chair and your feet on the ground. Be aware of your body moving through each part, feeling the weight of you arms, the movement through your body as you breathe.

PRESENCE:

Slowly turn your mind inwards. Scan your body from head to toe, observing any tension or discomfort. Don’t try to change what you find, simply feel aware. Scan yourself again and this time note which parts of the body feel relaxed.

YOUR THOUGHTS:

Turn your awareness to your thoughts. Notice any thoughts that arise without attempting to alter them. Gently note your underlying mood, just becoming aware of what’s there without judgement. If there’s nothing obvious, that’s fine too.

Recognise any feeling that

“MINDFULNESS IMPROVED NEARLY EVERY MEASURE OF FATIGUE, DEPRESSION AND QUALITY OF LIFE,”

ms. voice June 2011 Page21

study took part in meditation programs while researchers sought to establish how meditation may affect people diagnosed with multiple sclerosis. 150 people with mild to moderate MS were randomly assigned to receive either the eight-week meditation training or only usual medical care for MS. The class focused on mental and physical exercises aimed at developing nonjudgmental awareness of the present moment, or mindfulness meditation, emulating the lifestyle that monks have chosen for centuries in mountain refuges from India to Japan.

The results were published in the medical journal of the American Academy of Neurology (September 28, 2010). Those who went through the mindfulness program improved in nearly every measure of fatigue, depression and quality of life, while those who received usual medical care declined slightly on most of the measures. For example, those with mindfulness training reduced their depressive symptoms by over 30 percent compared to those with no training.

“MS is an unpredictable disease,” says Paul Grossman, PhD, of the University of Basel Hospital in Switzerland.

“People can go for months feeling great and then have an attack that may reduce their ability to work or take care of their family. Mindfulness training can help those with MS better to cope with these changes. Increased mindfulness in daily life may also contribute to a more realistic sense of control, as well as a greater appreciation of positive experiences that continue be part of life.”

There have been indications of even more profound effects that meditation may have on the human body. High in the mountains of northern Colorado attendees to the Shambhala Mountain Centre, a 100-foot tall tower reaching up through the pinetops, meditate in silence for up to 10 hours every day. In 2007 while they pondered the “four immeasurables” of love, joy, compassion and equanimity, a laboratory squeezed into the basement bristled with scientific equipment from brain and heart monitors to video cameras and centrifuges measured the physical responses to meditation.

The project was co-ordinated by neuroscientist Clifford Saron of the Centre for Mind and Brain at the

University of California, Davis. His team advertised in Buddhist publications for people willing to spend three months in an intensive meditation retreat, and chose 60 participants. Half of them attended in the spring of 2007, while the other half acted as a control group before heading off for their own retreat in the autumn.

While some of the results were not hugely surprising, indicating improvements in perception and wellbeing, one unexpected result which emerged was that meditation might help to delay the process of ageing by protecting caps called telomeres on the ends of our chromosomes.

Telomeres play a key role in the ageing of cells, acting like a clock that limits their lifespan. Every time a cell divides, its telomeres get shorter, unless an enzyme called telomerase builds them back up. When telomeres get too short, a cell can no longer replicate, and ultimately dies.

It’s not just an abstract concept. People with shorter telomeres are at greater risk of heart disease, diabetes, obesity, depression and degenerative diseases such as osteoarthritis and osteoporosis. And they die younger.

ms. voice June 2011

holds you and let it go. Be aware of these feelings. Be aware of the sensations as an observer watching from without. You are not within these thoughts reacting to them, caught within them. You experience them from without, aware of their presence, aware of their effect and by understanding them you are not trapped by them.

OBSERVE THE BREATH:

Observe the rising and falling sensation of each breath in your body. Feel each sensation - through the chest, down into your belly, along your arms and up into your shoulders.

Now begin silently counting each breath: 1 as you inhale, 2 as you exhale, 3 on the next inhalation and so on up to 10. Then begin again.

While doing this thoughts may bubble up. Gently bring your focus back to your breathing and just allow them to pass away.

FREE YOUR MIND:

Now simply sit with each breath and allow your mind to be free, to be calm. You might find yourself inundated with thoughts and sensations or you may feel calm and relaxed.

Whatever you experience is good. Allow yourself simply to be within space within time without need, without expectation.

GETTING STARTED

Create a calm, peaceful space away from concerns or difficulties. where you can sit still without being disturbed or interrupted.

Remove external distractions by turning off the telephone and television and as much as possible create a calm, peaceful place away from concerns or difficulties. It may be impossible to create a completely silent place away from distraction, so try not to worry too much about any external noise. There will always be some noise beyond your control. Use earplugs if external noise is disrupting your concentration.

SAME PLACE, SAME TIME

You can practice meditation at any time of day or night, but morning and evening is generally considered inductive to meditation. Mornings seem to work better for most people because you are less likely to be distracted by the demands of your day.; while meditating at night before going to bed can also be a time of stillness and reflection which facilitates meditation.

Whenever you decide to meditate find a time which

works for you so that it becomes a regular part of your schedule. Meditation benefits you most from being performed every day at the same time and, if possible, in the same place.

KEEP GOINGMeditation requires patience, understanding and practice. Try not to expect any particular result. If you have no expectation, you will not get discouraged and stop practicing, and because you don’t stop practicing, you will gradually become more and more comfortable in this different state of meditation.

Meditation progress is cumulative; even if you think nothing is happening, the daily effort is increasing your concentration and willpower and helping you to gain control over your mind.

If you practice meditation every day, even for just a few minutes, you will soon notice that the rest and relaxation that you feel begin to suffuse your entire life. These periods of stillness can be as refreshing as an hour’s nap, because for a few minutes you are taking a mental vacation from all the cares, responsibilities and involvements of your daily life.

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Three and a half years ago my family and I went to Fiji for a holiday. While at the Napier airport waiting for our flight to Auckland I volunteered to complete the departure forms. I assumed that the lighting was affecting my eye sight as I was unable to write smoothly or focus clearly on the short forms. I shrugged it off and we continued our trip. A few days into our stay I was buttering toast for my daughter and could not seem to grip the knife properly or hold it in the right way. It was incredibly frustrating. I also noticed that I was walking into chairs and stumbling with my right leg a lot. One night over cocktails we joked about the possibility of MS – never dreaming how true this would turn out to be.

Three days after our return from holiday I woke up around 4am, unable to roll over. My right side was completely paralysed and my speech was almost non-

existent. After my first ever trip in an ambulance I arrived at ED. The doctor’s initial diagnosis was a stroke, which was later increased to include the possibility of MS. I was admitted and tests were carried out. I was totally in shock - I felt as though I had let everyone down, especially my children and husband. This is not what we had pictured when we made our Wedding vows of ‘in sickness and in health’. During my stay in hospital one of my doctors sat down to chat with me. He had noticed my reaction to the words ‘multiple sclerosis’ and wanted to let me know

that in his opinion MS was preferable to stroke. All I could see was ending up in a wheelchair, but his reassuring bedside manner made a big difference in allowing me to get past my ignorance of MS and start to look at the positives. I will always be grateful that he took the time to speak to me about my fears.

Once I was given the diagnosis of MS I returned home; with the assistance of a Zimmer frame and two physio appointments scheduled each week. I threw myself into my recovery. Attending my physio appointments, doing all the home exercises she gave me and beginning my research. When I was discharged from Physio I

Thank youDL NEWMAN by SUSAN

“With the help of the DL Newman scholarship I was able to enrol in the IYTA Yoga teacher training diploma.

”

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was able to walk unaided and could again use my right arm and hand. I could not stand on tip toes or run though. It wasn’t good enough for me. I began yoga (something I had previously enjoyed) in earnest. Along with a daily yoga practice I totally changed the way I ate. I moved from a major meat eater to become vegetarian, eating things I had never previously heard of before like quinoa, millet, amaranth etc.

My health improved and I began to look around me and see how much difficulty supposedly healthy people had with their movements. Eighteen months after my paralysis

I began teaching yoga to a small group of women - attempting to pass on what I had learnt through my journey so far. With the help of the DL Newman scholarship I was able to enrol in the IYTA Yoga teacher training diploma. As my training draws to a close I look back in wonder at all that I have learnt. I am incredibly grateful for the ability to study yoga – heartfelt thanks to the DL Newman trust. I will be eternally grateful.Namaste (the light in me recognises the light in you),

Susan.

Dorothy L Newman ScholarshipThe DL Newman Scholarship assists people who have been diagnosed as having MS and as a result are unable to continue in their present employment, who need to change their employment and undergo a course of retraining in order to do so.

$15,000 is available for distribution and two applicants will be eligible for up to $7,500 each payable for their course fees for three years of study. Applications are open solely to people with MS needing to retrain for paid employment.

Applicants will be required to explain in a statement in their application the reasons why they chose their course of study, how they intend to use their qualification on successful completion of their course and the likelihood of employment following the course.

Applications for the Dorothy Newman Scholarship fund for this year (2011 academic year) have now closed and we have selected the winners.

Applications for the 2012 scholarships (for the 2012 academic year) will be advertised in July 2011 on the website www.msnz.org.nz

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riginating in ancient India around 5,000 years ago, Yoga typically means ‘union’ between the mind, body and spirit. It involves the practice of physical postures and breathing exercises, helping

to purify the mind, body and spirit, and create a balance between the body and the mind.

According to the yogis, true happiness, liberation and enlightenment comes from this union with the divine consciousness - the transcendent Self. In order to accomplish this, Yoga makes use of different movements, breathing exercises, relaxation technique and meditation. Yoga is associated with a healthy and lively lifestyle with a balanced approach to life.

More recently Yoga has become a popular form of exercise with numerous benefits to general health

and wellbeing:

Improves muscle tone, flexibility, strength and stamina

Reduces stress and tension

Boosts self esteem

Improves concentration and creativity

Lowers fat

Improves circulation

Stimulates the immune system

Creates sense of well being and calm.

Research trials into the benefits of practicing Yoga have also brought to light its impact on a range of illnesses. As well as having a range of general health benefits, Yoga helps manage or control some of the symptoms of MS.

YOGA &MULTIPLE SCLEROSIS

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Reduce Fatigue

atigue is one of the most common symptoms of MS, occurring in about 80% of people. Fatigue can significantly interfere with a person’s ability to function at home and at work, and may be the most prominent symptom in a person who otherwise has minimal

activity limitations.

Research into the effects of yoga in MS has found that practicing yoga significantly reduces fatigue. (1)(2). The controlled, blinded studies at the University of Oregon confirm that Yoga practitioners with MS have higher energy levels and greater vitality than they did before beginning Yoga, and than other volunteers that did other forms of exercise. (1) (2).

Yoga increases your energy, reduces fatigue, enabling people with MS to be more active and have a better quality of life.

Improve Range of Motion

essentially the movements and exercises which constitute Yoga involve stretching which is a natural antidote for two of the most devastating consequences of MS: reduced range of motion and spasticity. First, consider

reduced range of motion. There is no better, safer, faster nor more natural way to overcome the restrictions on full movement than lengthening them. This applies to muscles and their tendons, ligaments, joint capsules, and the adventitious scars and adhesions that may develop for a variety of reasons.

Range of motion is one of the gravest losses in a host of neurological conditions, for as range of motion decreases, the scope of possible activity diminishes proportionately. A bodybuilder could not bench-press a barbell regardless of his strength if his range of motion is

YOGA &MULTIPLE SCLEROSIS

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and sensory impairment is frequently accompanied by temporarily increased spasticity. But the spasticity, a neurological phenomenon, often subsequently retreats, leaving an unnecessarily long-lived mechanical reduction in range of motion that could be perpetuated by disuse.

The resultant loss of range of motion is often the most serious consequence of an exacerbating episode of MS. Yoga is a safe and sure remedy. In progressive MS degrees of range of motion may be lost unnecessarily due to failure to challenge the actual limits that impaired function imposes. These add up. Be it the spine, the hips, arms or ankles, unnecessary concessions to the disease work to contract the individual’s life-possibilities and opportunities, as well as their joints.

Strengthoga poses are generally stable involving remaining in a fixed position for a length of time. This stretches the soft tissues that limit the range of motion of every joint, and it quiets painfully spastic muscles that restrict the activities and trouble the lives

of neurologically compromised patients. Also, although it involves no weights or equipment apart from one’s own body, the standing poses, arm balances and twists require protracted muscular efforts increasing strength.

Holding any of these groups of poses for more than a few seconds requires isometric effort that has been proven to increase strength in a very efficient way. A muscle’s active range of motion is defined by the limits of its effective functioning. Therefore, in a real, practical, and immediate sense, raising strength

increases range of motion.

Coordination and Balanceoordination relates one muscle group to another, while balance relates the entire person to his or her environment. Coordination is largely a matter of balancing the mixed intensity

of contraction of some muscles with the varying degrees of relaxation of other muscles.

Yoga exercises involve holding positions which develop balance and coordination, utilizing general principles of coordination through the practice of differential contraction and relaxation of key muscle groups. As such it is the basis of good balance, and the antithesis of spasticity. By combining different postures and balance skills, Yoga exercises also build strength, endurance and grace of movement.

Confidence and Calmne of the Catch 22s of MS is that stress and tension probably play some part in bringing on an attack of MS; but once you have MS, this in itself creates stress and tension both physically and mentally. The practice of yoga can help alleviate both the

physical and mental stresses and tensions.

One difficulty commonly encountered by people with MS is the emotional turmoil and anxiety that can arise from a feeling of relative helplessness. This is as intense in patients with relapsing and remitting MS as those with the so-called “progressive” type. In each case there is uncertainty resulting from the

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unpredictable emergence and development of MS symptoms.

Self confidence may also be affected by the feeling of self-consciousness arising from disability and changing abilities. Yoga will give you an increased awareness of your own body. You are often called upon to make small, subtle movements to improve your alignment. Over time, this will increase your level of comfort in your own body. This can lead to improved posture and greater self-confidence. As spasms, spasticity, and clumsiness are worse when you are anxious and self-conscious, overcoming incapacitating self consciousness can lead to improvements in the condition.

Depression, mood swings and irritability has also been shown to improve with the practice of Yoga in a randomized controlled trial into the effects of Yoga on depression which reported positive findings (3).

Yoga Exercises for MSoga has become popular in the Western World as an alternative form of exercise with therapeutic benefits. However, the exercises should not be thought of on their own. The correct yoga breathing and the right mental approach are as important as the exercises for your body.

When people with MS first start yoga, they often find it difficult to do a particular movement or hold a position. With practice, however, many people with MS find that they can make dramatic progress, and discover quite quickly that they can do some exercises they never thought possible.

If you have never done yoga before, it is hard to learn how to do it from a book. It is far better to go to a class. If you go to an ordinary yoga class, tell the teacher you have MS. You may find you cannot do some of the balance exercises at first (such as standing on one leg with your hands in a prayer position). But you may well be able to do them with a bit of practice. Your local MS Society may also run Yoga classes or your fieldworker may be able to refer you to someone.

Once you have learned some basic exercises in a class, you can do them at home on your own. Ideally, to get the best out of it, you should practice yoga every day for at least 15 minutes.

Remember that yoga asanas tone up the neuro-muscular system of the body and keep it full working order; they develop and control the respiratory system, increasing oxygen flow and vitality. The internal organs work better; the spine is kept strong and supple; you enjoy a sense of real well-being.

References(1) “Yoga reduces fatigue in Multiple Sclerosis.” Dr. Barry Oken. Presented at the American Academy of Neurology, Honolulu, Hawaii, April 3, 2003.

(2) “Randomized controlled trial of yoga and exercise in Multiple Sclerosis.” Dr. Barry Oken. American Academy of Neurology 2004;62:2058-2064

(3) “Yoga for depression: the research evidence.” Karen Pilkington, Graham Kirkwood, Hagen Rampes, Janet Richardson

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the person with MS may be unable to carry out certain aspects of his or her role within the family, requiring the rest of the family to adapt to these changes, perhaps taking on additional responsibilities and roles, changing the dynamic of the family

HOW THE FAMILY FEELS ABOUT MS

The most common reactions of family members include grief, anxiety, resentment, and guilt. These feelings tend to come and go over the course of the disease, usually in response to changes in family life brought about by the progression of MS.

Grief is a response to loss. People experience grief whenever they lose something that

is important to them, whether it be a particular way of doing things, a valued activity, or even the feelings of security and general well-being. People tend to become anxious when they feel out of control or unable to predict what is going to happen next. Since one of the characteristics of MS is its unpredictability, family members may find themselves feeling anxious a good deal of the time.

Resentment is also a common reaction to feeling out of control. Family

As each family grows and takes shape, it develops a rhythm of its own. Individual family members take on certain roles in the household and patterns of interaction and communication become established. When one person in the household is diagnosed with a chronic illness such as MS , many adjustments will frequently have to be made, not only by the person diagnosed with MS but also by the whole family, disrupting these accepted patterns.

The individual with MS and the family as a whole will probably start thinking about their lives in a slightly different way. Suddenly, there is a whole new set of questions and concerns that will affect the way the family deals with the present and thinks about the future.

If the disease progresses

MS and

FAMILY

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members may, at times, feel resentful that MS has affected someone they love, that it has interfered with various aspects of family life and that they now have increased responsibilities. When family members feel resentful—particularly if that resentment is directed at the person with MS—they may also find themselves feeling guilty. While it may not seem “fair” or “nice” to feel resentful toward a person for having an illness, family members often don’t know what to do with their angry feelings. There simply

doesn’t seem to be any satisfactory place to put them.

Further complicating the feelings surrounding life with MS is the fact that family members may not necessarily experience similar feelings at the same time. While the person diagnosed with MS might have moved through the grief process, their family members might still be grieving or feeling resentful over the impact this change may have on their lives. A partner may be feeling anxious about

the impact of MS on their job or the increasing financial responsibility they may face.

It is not uncommon for one person to feel significant relief at the diagnosis and another to be very fearful. It is important to acknowledge that all emotions, both positive and negative, are important and are normal emotions in the given circumstances. It can also be very difficult to recognise and accept another’s feelings when your own are looming so large.

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CHANGING RELATIONSHIPS

In progressive conditions, the care-receiver gradually becomes more dependent. As the impact of caring increases, it can affect the relationships we have with those we care for.

All relationships have hopes and plans for the future, a shared history and a shared commitment to making the relationship work. MS can cause shifts in these. A partner might, for example, have to provide intimate care, such as helping with bathing or dressing. Care-givers may have to provide for the physical, social, emotional or financial needs of the person they care for, from simply supporting and keeping a check on someone, to carrying out a complex range of tasks, sometimes day and night. With MS, someone’s caring role can change from

one day to the next, with many varied and complex symptoms influencing the support they need.

Care-giving relationships involve interpersonal exchanges that are about maximising benefits and minimising costs and involve a mutual exchange of give and take. In practical terms, this relationship is about the process and spirit in which help is sought and provided.

In care-giving relationships, as the care needs of the care-receiver increase, the nature of the relationship changes. However, while both the care giver and receiver will have to adapt to physical and emotional changes it is also important not to be defined solely by these new roles as this can lead to frustration and confusion. The caring role is only part of any relationship and whilst being defined as a care-giver may be useful

for people wanting to access help and support, it is rarely how the person wishes to be seen in day-to-day life.

The key to maintaining an intimate relationship through challenging times is to talk openly with one another about the difficulties that you are facing. Communicating honestly with our family, friends and lovers is the only way that challenges can be met together, regardless of whether those challenges arise from MS or other obstacles.

A starting point to aid good communication is to recognise that everyone views situations from a different perspective and to open to understand those views even if we do not agree with them. The goal is to find common ground for communication and then use this to begin to work through coping with the intrusion of MS in family

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life and relationships.

Whether sudden or gradual, changes within relationships brought about by care-giver relationship can be difficult to cope with, but do remember that you are not alone. There are a great many people in similar circumstances, feeling similar emotions to you.

HOW FAMILIES DEAL WITH THESE FEELINGS

Learning to deal with the feelings these changes bring is a major challenge for families living with MS. The best approach is to recognise these feelings as a common response to a difficult situation, to find ways to express them comfortably with one another and to begin to share them. As with

any difficult challenge, teamwork makes it easier and allows each person to feel less alone.

Family members tend to be very protective of one another. They may be afraid that expressing these feelings will be hurtful to others. However, feelings that are bottled up have a way of expressing themselves in the way people talk, act and even touch one another. It is far better (and less stressful in the long run) to have the feelings out in the open where everyone can begin to deal with them together. Family counsellors who are knowledgeable about MS can provide a helpful “jump start” for families who find it difficult to initiate these kinds of conversations. A Field Worker from a regional MS Society can provide support and point you in the direction of resources that may be

useful.

POTENTIAL CHALLENGES TO FAMILY COPING

The primary challenges to the family’s coping efforts come from two sources—the characteristics of the disease itself and the mixture of personalities and coping styles that tend to make up every family.

MS is a chronic disease for which we do not yet have a cure. It is unpredictable both in the course that it will follow and the symptoms that it will cause. Taken together, these characteristics mean that families have little way of predicting what is going to happen next week, let alone ten or twenty years down the track. Planning, whether it is for a short-term event such as a family outing over the weekend, or for the longer-term such as making a job change or saving for retirement, can become difficult and stressful.

In addition, each family member brings to this experience a different set of personality traits and coping strategies. For example, one family member might want to learn everything there is to know about MS, go to meetings and support groups and talk to family

and friends about the disease. Others may be angry, lash out and blame others or may just want to “shut it out”, talking and thinking about it as little as possible. There is no single, “correct” way to deal with the intrusion of MS into family life and different coping strategies may work more effectively at different points along the way. The important thing is to be able to recognise the different needs of individual family members. Too often, one person’s coping style can be misinterpreted as selfish, uncaring or misguided by someone whose style is very different.

RECOMMENDED STRATEGIES FOR FAMILY COPING

The single most important strategy for families living with MS is to find a place for the disease in their lives without allowing it to take more space than it really deserves. In other words, the uninvited guest needs to be given a comfortable room but doesn’t need to clutter up the whole house. Family resources, whether they are financial, physical, or emotional, should be balanced so that the needs of each person can be met. A second strategy is to plan for the worst

while hoping for the best. Families often shy away from this kind of planning, not only because they find it frightening, but also because they are concerned that thinking about “the worst” might somehow cause it to happen. The purpose of learning about the potential impact of MS and preparing for the future is to give the family more of a sense of security and control. Families who avoid thinking about what the future might bring are caught off guard each and every time there is a change. As a result, they feel constantly off balance and out of control.

Examples of effective planning might include buying a one-storey rather than a three-storey house; selecting an automatic rather than a manual car; putting a bit extra into savings each month in anticipation of future need; and looking carefully into different health and disability insurance plans to see what might provide the greatest protection for

the family overall.

If the MS never progresses to the point of causing major disability (as is true in the majority of cases), nothing has been lost and family members have enjoyed the security of knowing that they were as prepared as they could be for all possibilities. If the MS does prove to have a more significant effect, the family has created a safety net for itself and feels more prepared to deal with whatever comes to pass.

The third strategy is to make use of available resources. Whether the MS is relatively mild and stable or more progressive, it represents a major intrusion into family life.

Families need not feel that they have to “go it alone”. There are a variety of resources available to help families learn about the disease, to talk about it and to cope with its effects. Too often, families wait until there is a crisis to ask for help. Utilising available resources along the way can help to avert crises and keep family life on a more even keel. No one wants the “uninvited guest” to move in and everyone wishes it would leave. In the meantime, family members can work together to adapt to the demands of the illness while maintaining a sense of control over their own lives.

“The important thing is to be able to recognise the different needs of individual family members.“

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PROFITS TO CHARITY100%

New Zealand

No other MS treatment has been studied over such a long period.1,2

Currently, there is no cure for MS, but in Betaferon® we now have a treatment that, when used early, slows nerve damage and disease progression, and improves cognitive function.2-5 And it has a long history – after all it’s been in use for more than 17 years worldwide.

So if you are looking for the chance to enjoy life with your family for as long as you can, talk to your doctor about whether Betaferon is right for you.

So much living to do

BETAFERON is a Prescription Medicine. Use strictly as directed. Consult your pharmacist or other health professional in case of side effects. BETAFERON is reimbursed for some patients. Normal Doctor visit fees apply. See your neurologist or specialist for details. BETAFERON (interferon beta-1b). Each mL of prepared solution contains 0.25mg or 8 million IU of Interferon beta-1b. BETAFERON is for use in patients who have early stage, relapsing remitting or secondary progressive multiple sclerosis. BETAFERON must not be used if you are allergic to beta interferon -1b, human albumin or manitol. BETAFERON should not be used if you are pregnant or trying to become pregnant, are breast feeding, suffer from severe depression, have liver failure or uncontrolled epilepsy. BETAFERON should be used with caution if you have heart problems, depression, blood or bone marrow disorders, pancreatitis, kidney disease or severe injection site reactions. BETAFERON may affect liver function and rare cases of liver damage and skin breakdown (causing scar formation) have been reported. The most common side effect is to experience ‘flu-like’ symptoms such as fever, chills, headache and painful joints. These events tend to decrease with time. To minimise the risk of injection site reactions the correct sterile injection technique should be followed and appropriate training is required.REFERENCES: 1. Reder AT, et al. Neurology 2010;74:1877-1885, 2. Bates D. et al. Neurology, Vol.76, Number 1, January 2011. Supplement 1, 3. IFNBMS Study Group. Neurology 1995;45:1277-1285, 4. Kappos L, et al. Neurol 2006;67:1242-1249, 5. Kappos L, et al. Lancet 2009;8:987-979. For further information please consult the Consumer Medicine Information available on www.medsafe.govt.nz or phone 0800 233 988 or contact Bayer New Zealand Limited, PO Box 2825 Auckland 1140. TAPS Approval CH 2852; dated Febuary, 2011 L.NZ.02.2011.0031.

Betaferon DTC A4 Print Advert w TAPS n MAP.indd 1 5/6/2011 8:16:37 AM

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