ms voice dec 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

voiceIssue 36 Dec 2011

Beat the Heat Guide to keeping cool durng the hot summer months Feature page 30

Charlotte Hinksman How we can improve our self esteem Feature page 32

Oral BG12 Thought to inhibit immune cells and molecules involved in MS Research News page 8

The perfect

The Joy of Water

people with MS

environment for

Ahoy Captain!A dream comes true when Kate becomes captain of a navy ship

READ INSIDE

Reference: 1. AVONEX® Approved Product Information. 2. Betaferon® Approved Product Information. 3. TYSABRI® Approved Product Information. 4. Copaxone® Approved Product Information.

Medicines have benefits and some may have risks. Ask your doctor if Avonex is right for you.

© 2010 BI NZ

Biogen Idec and AVONEX are registered trademarks of Biogen Idec MA Inc. Betaferon is a registered trademark of Bayer Schering Pharma Aktiengesellschaft. Copaxone is a registered trademark of TEVA Pharmaceuticals Industries Ltd. TYSABRI is a registered trademark of Elan Pharma International Ltd.™AVOJECT IM is a trademark of Union Medico ApS.

2010/3/AV - NZ -0001 • B1379/4/10

Taps No. PP9009

Introducing

AVONEX the only once weekly MS therapy1–4

AVONEX is a Prescription Medicine that is reimbursed for those patients who meet the special authority criteria in The Pharmaceutical Schedule

Assisting patients administer their AVONEX injection

AVOJECT IM is available by calling the AVONEX ALLIANCE and can only be used with pre-filled syringes.

AVONEX ALLIANCE is a free support program to assist MS patients with AVONEX therapy.

MS VoiceIssue 36 Dec 2011

Contents

Crock’s ChronicleMelanie tells us why for better or worse it is all up to us

Regional VoicesLatest local news and events

ResearchA selection of recent research into emerging treatments and

therapies

The Joy of WaterHow water can be a fun way to maitaining health

Eliptical ExerciseA recent paper suggests that this type of exercise can benefi t people with MS

AGM 2011The winners of the Esme Tombleson awards

Ahoy Captain!A dream comes true

Raising Self EsteemCharlotte Hinksman returns to tell us how we can improve our self esteem

Beat the HeatHow to keep cool during those hot summer months

5

6

Reference: 1. AVONEX® Approved Product Information. 2. Betaferon® Approved Product Information. 3. TYSABRI® Approved Product Information. 4. Copaxone® Approved Product Information.

Medicines have benefits and some may have risks. Ask your doctor if Avonex is right for you.

© 2010 BI NZ

Biogen Idec and AVONEX are registered trademarks of Biogen Idec MA Inc. Betaferon is a registered trademark of Bayer Schering Pharma Aktiengesellschaft. Copaxone is a registered trademark of TEVA Pharmaceuticals Industries Ltd. TYSABRI is a registered trademark of Elan Pharma International Ltd.™AVOJECT IM is a trademark of Union Medico ApS.

2010/3/AV - NZ -0001 • B1379/4/10

Taps No. PP9009

Introducing

AVONEX the only once weekly MS therapy1–4

AVONEX is a Prescription Medicine that is reimbursed for those patients who meet the special authority criteria in The Pharmaceutical Schedule

Assisting patients administer their AVONEX injection

AVOJECT IM is available by calling the AVONEX ALLIANCE and can only be used with pre-filled syringes.

AVONEX ALLIANCE is a free support program to assist MS patients with AVONEX therapy.

8

10

20

Research NewsLatest research into

treatments and therapies

Ahoy Captin A dream comes true when

Kate becomes captain

of a navy ship

Beat the HeatGuide to keeping cool during

the summer

Features

22

24

26

30

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

Firstly, I would like to thank everyone for a solid and productive AGM and welcome the new MSNZ President, Malcolm Rickerby. Malcolm is the President of our Canterbury MS & PD Society and brings with him a wealth of business experience.

MSNZ’s National Office provides booklets, leaflets, information and resources to all of our regional offices. We also run; a free information line, website enquiry service, administrate the website and Facebook pages, produce the Voice and advocate and lobby for people with MS in New Zealand – all with just 3 staff members!

Unfortunately, financially providing for these services is becoming impossible. Funding is down and the donor dollar is being spread ever thinner, as more and more people find themselves in difficulty, whether it is

due to natural disaster, financial, or illness.

We have attempted to increase revenue through fundraising, however, our events have not been well patronised and this avenue is closed to us.

For this reason, the time has come to review the services that National Office provides – this will not affect your services from your regional offices.

Due to our lack of funding and the review process required, the Voice will become a bi-annual production for 2012. We apologise for this cut in service – we are very proud of the Voice magazine and the flagship publication it has become and hope that our decision, which we have not taken lightly, is understood.

May I take this opportunity to thank you for your support this year and to wish you and your families

a very happy and safe holiday season.

Rosie

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 produced, written and designed by Daniel Melbye.

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.

ms. voice Dec 2011

Crock’s Chronicles

Thank heavens we won the rugby! The endless post mortems and frustration over the past twenty years of losses have driven our rugby fraternity into an emotional quicksand. But while holding the recently won Webb-Ellis trophy aloft makes us feel good as a nation, given the impact on every New Zealander’s future, it’s another game of two halves that we should be really concerned about. So with the Rugby World Cup now safely in the bag, attention quickly swung to the other national competition: the Election.

Our three-yearly Parliamentary battle needs inspired leadership to succeed. Richie McCaw more than delivered on the field but can our politicians do likewise. After watching several leaders’ debates and the subsequent media worm rise and fall, I’m worried that many voters tick the boxes based purely on a candidate’s personality, not necessarily where they stand on contentious issues. Electing our government is too important to treat

like an American Idol or X Factor.

There is a striking similarity between sport and politics. Both are a turbulent game of scoring points; the ball nervously tossed about with varying degrees of skill and bravado. Sometimes it’s dropped altogether accompanied by boos and cheers, other times we’re treated to brilliant back-line/back-bencher running. Blood gets spilt as egos and policies are defeated until the triumphant are sworn in with a group photo on the steps of Parliament. After that, much like in the America’s Cup, the winning team decide how the game will be played from then on. And politically speaking, that’s when ordinary New Zealanders kiss their democratic input goodbye until the next election.

And is our version of democracy really what New Zealanders want? We’ve been asked to vote on the electoral system, but personally I’d extend the question even further. Is our one day per three years

of being heard, enough? When it comes to major issues such as asset selling, a binding referendum is justified, (note the referendum/referee similarity.) Such radical decisions to sell state assets have been tried before by both main parties, costing many times the sale price when buying them back a few years later. Will we ever learn from history?

Our All Black forward pack rucked and mauled themselves to a standstill in the pursuit of the Cup and I’ll never forget our semi-final win against Australia. But it’s not just sport where we punch above our weight. New Zealanders have long been far more innovative, diverse and successful on the world stage in science, business and technology than countries far larger in population. Sir Ernest Rutherford kicked us off and we are still doing it. Perhaps we have the mentality of the Chihuahua, a big dog’s attitude in a small body. A bit of mongrel never hurts, either.

The Goal to Successby Melanie Trevethick

ms. voice Dec 2011

The new book by internationally published NZ author Patricia Wilcox tells the inspiring story of how a diagnosis of MS opened the doors to exciting new opportunities, both for herself and others whose lives have subsequently been touched by her learnings.

When Patricia was diagnosed with MS over twenty years ago, the prognosis was bleak. Bedridden and confi ned to a wheelchair, with previously rewarding occupations in teaching and graphic design reduced to ashes, her world became confi ned within the narrow walls of a sickroom. The family was quietly advised that no eff ective treatments were available and that alternative arrangements should be made for the children‘s future. Rejecting the fi nality of this view, in the days - and eventually months and years - that followed, Patricia began to explore new methods that might off er hope and fresh possibilities for the future.

The exciting progress that gradually unfolded built on her previous practices such as meditation, yoga, and various cognitive therapies developed

over years of experience as a counsellor. Over this same period, more and more health practitioners around the world were contributing to a growing body of knowledge about how the progress of diseases like MS could be benefi cially aff ected by these types of therapy.

Patricia has since used these understandings to assist people experiencing a wide range of life crises, including grief and loss, anxiety and depression. Her book “Change Your Life - One Thought at a Time” (available from George Ronald publishers http://www.grbooks.com and also Amazon) focuses on the process of change and transformation, outlining practical methods that enable people to fi nd new purpose and meaning in the midst of adversity.

In appreciation of the work of the MS Society, Patricia would like to donate copies of her book to the fi rst 3 readers who contact her website http://www.patriciawilcox.com quoting the email address of their MS Society.

Change your life by Patricia Wilcox

RegionalVoice

ms. voice Dec 2011

Local fundraising

Daniel Brown and Scott Savage, Taieri College students who helped set up and man a stall for the Otago Multiple Sclerosis Society at Otago Farmers Market on Saturday 27 August as part of the MS Awareness Week events. They did a great job as they both got up at 6am on a Saturday without grumble as the stall had to be set up by 7am!!

Both students actively engaged with the public most of the morning and helped us raise approx $300 from donations, raffl e tickets and the sale of MS pens. A good result.

Are any of you paying too much for your van registration? We were....annual cost of $597 for a Toyota Jumbo Van with Hoist...

As our van is only used for transporting me in my wheelchair I thought this cost was too much!

After phoning the NZTA[New Zealand Transport Authority] I was assured that this is the cost for a 3L Diesel van, no matter what it may be used for.....

I phoned Rosie Gallagher, National Director of the MS Society & explained our situation...To cut a long story short, the Associate Minister of Transport was contacted by Rosie Gallagher...he then contacted the

NZTA, who personally phoned me & advised us this was incorrect costing for us.

Our van had previously been used as a Commercial Vehicle

& even though it had ‘private passenger’ on our account, it still had to be re-assessed.

All we had to do was take our van to the local VTNZ [Vehicle Testing New Zealand] with our last Registration account, have our van inspected & changed to Type 7, from Type 8..on their computer files....our cost is now $417 per year..

The good news also is we received a payment from NZTA....with the full deduction amount..

Thanks to Rosie of MS Society, The Associate Minister of Transport, & Mr. Hayden Sinclair of NZTA..[phone 0800 108 809]. Hope this helps others.

Local News & Events

ms. voice Dec 2011

Advoacy in action Orange MS RibbonsThe MS Society are selling these hand spun glass orange ribbons to raise awareness for our cause.

They are a great awareness tool - and very pretty too! They come with a magnetic clasp, which is great for fingers that don’t always listen!

They are available from National Office for just $22.50, inc. P&P.

Please contact Marie on 0800 67 5463 (0800 MS LINE) or email [email protected] to secure yours now.

Scandinavians get a lot more vitamin D from their diet than other Europeans.

This piece of research, published in the Journal of Neurology Neurosurgery and Psychiatry, strongly confi rms the trend and improves our understanding of the role that environmental factors may play. However, researchers highlighted that MS is likely to be caused by a combination of genetic and environmental factors and that more research is needed into the role of vitamin D in MS.

In a study published this month researchers have found a consistent relationship between latitude (distance from the equator) and the prevalence of MS (the number of people with MS in a population).

Smaller studies have suggested this for many years, but this recent work is the largest and most comprehensive study of latitude carried out to date - comparing results from 321 individual studies from around the world.

They found MS became more prevalent in countries further from the equator. The cause for this is likely to be linked to exposure to ultra-violet (UV) light and vitamin D, which the body makes when exposed to the sun.

There were some exceptions to the trend – for example, the prevalence of MS in Scandinavia is much lower than would be expected for countries at that latitude. A possible explanation is that despite low exposure to sunlight during the winter,

The infl uence of geography on the prevalance of MSInternational Journal of Neurology, Neurosurgery & Psychiatry

Research

News

ms. voice Dec 2011

Researchers identify cellular pathway to potentially block disease-inducing infl ammationSource:Lerner Research Institute.

October 2011

Researchers have discovered a cellular pathway that promotes infl ammation in diseases like multiple sclerosis. Understanding the details of this pathway may provide opportunities for tailored treatments of infl ammatory and autoimmune diseases.

http://bit.ly/qzbi50

http://www.lerner.ccf.org/

Biogen Idec announced that the experimental oral therapy BG-12 signifi cantly reduced the average number of annual MS relapses in a two-year, Phase III clinical trial of more than 1400 people with relapsing-remitting MS. Although its exact mode of action is not

known, BG-12 is thought to inhibit immune cells and molecules involved in MS attacks on the brain and spinal cord. Data analysis is ongoing and the company expects to provide a full report at an upcoming medical meeting.

http://bit.ly/sX12M9

Positive Results Announced from Phase 3 Study of Oral BG-12The Lancet, Volume 372, Issue 9648

Teriflunomide drug reduces relapse rate of people with MSSource: The New England Journal

of Medicine (2011;365:1293-303)

A recent trial published in The New England Journal of Medicine has reported that oral teriflunomide reduced the average number of MS relapses in a year significantly more than inactive placebo.

The therapy also reduced the volume of tissue damage and active areas of damage in those who were taking teriflunomide compared to placebo at the end of the two-year trial.

In the TEMSO trial, 1088 people with relapsing MS were randomly assigned to receive 7 mg teriflunomide, 14 mg teriflunomide, or inactive placebo for 108 weeks; 796 (73.2%) completed the study. The primary endpoint measured was the average number of relapses in a year, and secondary endpoints included disability progression using the EDSS disease activity scale, disease activity on MRI scans, and measures of fatigue.

Research News

Findings from an MS Research Australia funded project have been published in the International Journal of Neurology, Neurosurgery & Psychiatry by Prof Michael Pender and his team. The researchers conducted research on the way that the immune system attacks cells infected by Epstein-Barr virus (EBV) and how this may influence MS.

There is a great deal of scientific evidence showing that EBV has a role in MS susceptibility. After infection with EBV, the virus remains in the body for a long time and can be found in infected B cells, one of a number of different types of white blood cells. It has been shown that a certain group of white cells called CD8 T cells are important in eliminating these virus-infected cells. Research has shown that people with MS have less of these special CD8 T cells in their blood.

In the newly published

research, Prof Pender and his colleagues at the University of Queensland, School of Medicine have studied the blood from 64 people with MS and compared it to age and sex matched controls without the disease. Using a technique called flow cytometry, which allows rapid study of large numbers of white cells, they have investigated the relationship between CD8 T cells and Epstein-Barr virus. They confirmed that people with MS have significantly less CD8 T cells and that the number of special CD8 T cells gets lower with age, something that did not happen in the controls. The scientists believe that people with MS may have a genetic deficiency which means they are unable to make a sufficient CD8 T cell immune response. These findings could lead to new drug treatments or vaccinations to control or prevent Epstein-Barr infection leading to prevention of MS.

Research News

ms. voice Dec 2011

T cells hold more clues in the MS Epstein-Barr virus mystery International Journal of Neurology, Neurosurgery & Psychiatry

The Joy of Water

ms. voice Dec 2011

Aquatic exercise refers to exercise performed in or upon water. Water can be a particularly good environment for many exercises as water supports the body, reducing the risk of falls and lessening the stress placed on joints and muscles.

Aquatic exercise is often recommended because its unique properties can be used to gain a range of exercise benefits which provides optimal exercise

conditions for the person with MS.

Water exercise offers physical benefits such as improved balance, flexibility and strength. Many water exercise enthusiasts also enjoy decreased stress, better circulation and more energy. You may also lose weight, depending on the intensity of the workout and your caloric needs. There as lots of different types of water exercises you can enjoy and they can be adapted to match your physical capabilities.

Aquatic exercise can bring a lot of physical benefits and may be the perfect environment for people affected by Multiple Sclerosis.

The effects of buoyancy in water, caused by the upward pressure of water on the body, mean that the effects of gravity is reduced. This weightlessness helps a person with weakened limbs attain a greater range of motion and reduce pressure on joints. In addition, chest-high water can provide support, enabling many people with MS to stand and maintain balance for exercises with less effort than normally required.

As water is denser than air it provides greater resistance to movement. The more surface area that you present in the direction of the movement, the more resistance you create, and the more force needed to overcome that resistance. The resistance that water provides can be used to strengthen muscles.

Turbulence, the irregular motion or swirling agitation of water, can also provide an environment for static and dynamic balance training with minimal risk of injury. The level of challenge can be raised by increasing the water agitation (perform faster or larger movements of the body within the water).

Taking these properties of water into consideration when designing an

aquatic exercise program can facilitate movement and vary the intensity of the exercises. Strength, fitness, balance, stretch and relaxation exercises can all be done in a pool, and you can tailor activities to your own needs.

Increasing StrengthStrengthening exercises can help build your muscles so they can absorb shock and protect your joints from injury, as well as help you get around better. These exercises use the resistance of the water, body, or floatation devices to make your muscles work harder, thereby helping them get stronger. An example of this types of exercise would be slow leg kicks or arm movements through the full range in flexion, extension, abduction.

Exercises can be adapted by using dumbbells, hand paddles or aquatic ankle weights to increase resistance or increasing repetitions and amplitude of movements (e.g., jump higher or further).

Alternatively you can decrease resistance by slowing movements, eliminating body weight (by supporting the body with floatation devices such as pool noodles, floatation mats or buoyancy vests,

ms. voice Dec 2011

Why is water good

or by exercising in deeper water) or performing movements close to the surface of the water.

Even if you are unable to maintain a standing position independently due to weakness or balance impairment, many exercises can be performed reclining instead of standing using a floatation device.

Turbulence created by exercise movements can make it difficult to maintain

balance . In this situation you can stabilise the body more effectively by leaning against the pool wall during upper limb exercises, holding a rail during lower limb exercises or by exercising in shallower water.

Better Fitness Cardiovascular (aerobic or endurance) exercise is any physical activity that

uses the large muscles of the body in rhythmic, continuous motions. The purpose of these exercises is to make your heart, lungs, blood vessels and muscles work more efficiently. They also can result in improved endurance, stronger bones, improved sleep, controlled weight and reduced stress, depression and anxiety.

Fitness exercises involves a variety of exercises that increase the work rate of the heart and lungs such as swimming, kicking, running, walking, cycling and jumping. You can adapt these exercises by adding resistance such as hand paddles during swimming or flippers during kicking, increasing speed of movement or increasing duration of activity.

Decrease intensity by minimising resistance, slowing movements, reducing activity duration or reducing body weight by exercising in deeper water.

If you have difficulty swimming due to impaired coordination or weakness in upper or lower limbs you could support your legs or arms with floats during exercise or hold onto a pool edge rail or a floatation device. Cycling and kicking exercises can be performed in supine or prone positions using floatation devices.

ms. voice Dec 2011

Evidence of Benefits

Evidence for therapeutic benefit of aquatic exercise

among people with Multiple Sclerosis is limited as few

of the studies in this area have looked specifically at the

effects upon people with Multiple Sclerosis.

While there has been some limited research into the

effects of aquatic exercise on people with Multiple

Sclerosis that indicates that it can improve muscle

strength (6), motor function (1), fitness (7), as well as

improving gait and mobility (8), reducing fatigue (2) and

generally increase quality of life or sense of wellbeing.(3,

9) However, while the research provides some evidence

of the benefits of aquatic exercise, due to the small scale

of the studies the evidence is not conclusive.

There is wider evidence of benefits of aquatic exercise

from studies involving people with spinal cord injuries,

traumatic brain injuries and other neurological

conditions. This growing body of evidence provides

useful guidance for the safe application and potential

beneficial outcomes of aquatic exercise for people with

Multiple Sclerosis.

Some Good Water Exercises

Laps

Lap swimming helps you strengthen your leg muscles, builds your upper body as you continually pull your arms through the water and helps you improve lung function by developing a regular breathing pattern. If you want to focus on your lower body, you can walk or run laps in a pool. The more of your body that’s underwater as you move, the more impact the workout will have.

Toning BallToning ball exercises use the buoyancy of a beach ball and the resistance of the water to build muscle. There are many toning ball workouts, but they all use the same basic mechanics. Grip a beach ball in both hands and pull it beneath the surface of the water. As you move the ball --- you can use lines, figure-8s or other patterns --- the buoyancy and resistance create the load you need for your workout.

Free Weight Exercises

Other kinds of hand-held water weights called water dumbbells or water barbells help individuals to accomplish many different kinds of aqua activities

based on traditional free weight routines. From curls and lifts to other more specialized exercises, these handy foam weights help to make sure that different parts of the body get challenged during a routine.

Rows

Rows will define the muscles in your shoulders and back. Hold your water weights up close to your chest as you did with the karate punch. Put your arms out in front of your body with your palms facing down. Now pull both of your arms forcefully back to your chest using your arms and shoulders. Make sure that you use your shoulders in this exercise. It should feel like you are trying to touch your shoulder blades together.

Underwater Jumping Jacks

Jumping jacks and other fitness exercises are tough enough in a normal environ,emt, but if you try them in the water, you find yourself in for a different level of a workout. As your limbs move through the regular range of motion, the water resistance makes each move work your muscles that much harder.

Some lateral motion aerobics can also be done with ankle and foot water weights for increased resistance and training for the foot, leg and hip muscles.

Water AerobicsWater aerobics workouts resemble normal aerobics classes, but benefit from the water’s cushioning effect. Water also provides resistance in all directions. This differs from floor-based aerobics moves that rely on resistance from gravity, your body weight and, in some cases, fitness equipment.

The spaghetti tube

The spaghetti tube, also known as a pool noodle, expand the variety of exercises that can performed in a pool. Because it provides buoyancy, you can place it across your chest, lie on your stomach, and kick, working the leg muscles. You can lie on your back with the spaghetti tube wrapped around your torso and kick, working your leg muscles. Place the spaghetti tube behind your back, providing you with support while you perform crunches. Push it underwater to provide resistance for various arm exercises. Tie it around your waist and run through the water --- it will provide added resistance.

ms. voice Dec 2011

1. Community-based group

aquatic programme for individuals

with multiple sclerosis: a pilot

study

Eleven people with Multiple

Sclerosis took part in the study

which involved taking part in 60

minute aquatic exercise sessions.

The group sessions were held

twice weekly for for five weeks

and included a variety of different

exercises encompassing aerobic

activity, strength and flexibility

exercises, walking and balance

activities.This small study reported

that the aquatic exercise improved

motor function.

This small study reported that the

aquatic exercise improved motor

function. Improvements were

found in areas of grip strength,

gait speed and balance. The

authors suggest that this aquatic

training programme is appropriate

and beneficial for individuals with

multiple sclerosis. Salem Y, Scott AH,

Karpatkin H, Concert G, Haller L, Kaminsky E,

Weisbrot R, Spatz E. Department of Physical

Therapy, Long Island University, Brooklyn,

New York, USA. [email protected] PMID:

20726740

2. Impact of aerobic training on fitness and quality of life in multiple sclerosis

This randomised controlled trial assessed the effects of land-based aerobic training (combined arm and leg cycle ergometry) among people with MS. The exercise group demonstrated significant improvements in maximum aerobic capacity and some improvements in strength and function. The exercise group also showed significant reductions in factors related to quality of life, such as depression, anger, and fatigue. From these findings it may be hypothesised that aquatic exercise of similar aerobic intensity (five-minute warm-up, 30 minutes of exercise at 60% Vo2 maximum, followed by a five-minute cool-down) may produce similar effects in people with MS. Petajan J,

Gappmaier e, white A, et al. Ann

Neurol 1996; 39: 432–441

3. Exercise, functional limitations, and quality of life: a longitudinal study of persons with multiple sclerosis

Stuifbergen et al.10 conducted a five-year longitudinal study to identify patterns of change in functional limitations, exercise behaviours,and quality of life in people with MS. A total of 560 participants completed the study. The main findings were that people who reported more frequent exercise behaviours tended to have lower functional limitations and more positive quality of life responses. These results suggest that people with MS who participate in regular and on-going exercise (land-based or aquatic-based) will have a slower accumulation of functional limitation and will maintain a higher quality of life. Stuifbergen A, Blozis S, harrison T, et al. Arch Phys Med Rehabil 2006; 87(7): 935–43

Further Read

ing AND

current

reseach

benefits of Aquatic

3. Exercise, functional limitations, and quality of life: a longitudinal study of persons with multiple sclerosis

Stuifbergen et al.10 conducted a five-year longitudinal study to identify patterns of change in functional limitations, exercise behaviours,and quality of life in people with MS. A total of 560 participants completed the study. The main findings were that people who reported more frequent exercise behaviours tended to have lower functional limitations and more positive quality of life responses. These results suggest that people with MS who participate in regular and on-going exercise (land-based or aquatic-based) will have a slower accumulation of functional limitation and will maintain a higher quality of life. Stuifbergen A, Blozis S, harrison T, et al. Arch Phys Med Rehabil 2006; 87(7): 935–43

4. Evidence for effective hydrotherapy

A systematic review by Geytenbeek looked at the clinical effectiveness of hydrotherapy among a range of populations including people with rheumatoid arthritis, osteoarthritis, lower back pain, and some neurological conditions such as MS. Moderate-to-strong evidence for improvements in pain, strength, flexibility, functional ability, selfefficacy and affect, as well as lower evidence for improved balance and fitness were reported. Geytenbeek

J. Physiotherapy 2002; 88(9): 514–29

5. Evaluation of an aquatics programme on fitness parameters of individuals with a brain injury

Driver et al.conducted a small randomised controlled trial with an experimental group of eight brain-injured people. The experimental group completed an aquatic program (aerobic and resistance exercises) and achieved improvements in fitness, range of movement, and muscle endurance. Driver S, o’connor J, lox c et al. Brain Injury 2004.

18(9): 847–59.

6. Effects of an aquatic fitness program on the muscular strength and endurance of patients with multiple sclerosis. Gehlsen GM, Grigsby SA, Winant DM. Phys Ther 1984; 64(5): 653–7

7. Outcomes of an aquatic exercise program including aerobic capacity, lactate threshold, and fatigue in two individuals with multiple sclerosis. Pariser G, Madras D, weiss e. J Neurol Phy Ther 2006; 30(2): 82–90.

8. Exercise in 94°F water for a patient with multiple sclerosis. Peterson c. Phys Ther 2001; 81(4): 1049–58.

9. Effects of an aquatics exercise program on quality of life measures for individuals with progressive multiple sclerosis. Roehrs TG, Karst GM. J Neurol Phys Ther 2004; 28(2): 63–71.

10. A single blind randomized, controlled

trial of hydrotherapy for

varicose veins. ernst e,

Saradeth T, Resch Kl. Vasa 1991;

20(2): 147–52.

11. Edema of pregnancy:

a comparison of water

aerobics and static

immersion. Kent T, Gregor J,

Deardorff l, et al. obstetrics and

Gynecology 1999; 94(5 Pt 1):

726–9.

12. Ponichtera-Mulcare

JA. Exercise and multiple

sclerosis. Med Sci Sports Exerc

1993; 25(4): 451–65.

13. Driver S, o’connor J,

lox c et al. Evaluation of

an aquatics programme

on fitness parameters of

individuals with a brain

injury. Brain Injury 2004. 18(9):

847–59.

14. Kesiktas N, Paker N,

erdogan N, et al. The use

of hydrotherapy for the

management of spasticity.

Neurorehabil and Neural Repair

2004; 18(4): 268–73.

Each year the MS Society of NZ presents the annual Esme Tombleson awards at the AGM for ‘Person with MS of the Year’ and ‘Caregiver of the Year’.

This year MSSNZ was proud to present Karen Leatham with the ‘Person with MS of the Year’ award, and Bruce Cameron with ‘Caregiver of the Year’ Award

The Multiple Sclerosis Society of New Zealand AGM 2011 presents the Esme Tombleson annual awards for

person of the year and care giver of the year

A Timaru woman was awarded the “person of the year” award by the Multiple Sclerosis Society in recognition of her work in the community as an active member of South Canterbury MS Society.

She was nominated for the award by Fiona Pierce, the field officer in South Canterbury, who felt she deserved recognition for the many years of hard work involved with supporting people with MS.

Karen Leatham, who was diagnosed with the Multiple Sclerosis 18 years ago, flew to Wellington to receive the award, which acknowledged her “outstanding and inspirational” achievements.

Karen Leatham

Person of the year

The annual awards were established in 2002 to firstly recognise people with MS who have demonstrated that they are an outstanding example to the MS community, and secondly those people who are or who have been exceptional caregivers to people with MS, demonstrating outstanding commitment and devotion in their support.

The awards are also an opportunity to honour Esme Tombleson for the many years of valuable work and commitment she invested in people with MS.

Esme Tombleson was the co-founder of the national Multiple Sclerosis Society in 1961 and from 1975 was president for many years. She was also founder and president for many years of the Gisborne branch and on the International Federation of the Multiple Sclerosis Society’s executive. In 1987 she received the rarely awarded gold medal for distinguished services to Multiple Sclerosis.

Esme Tombleson Awards

She discovered she had MS after she lost sight in one eye for a week during a netball tournament in her 20s.

She said her MS was slow to develop but it worsened after she was diagnosed with breast cancer in 2008 which meant that she had to undergo surgery, radiotherapy and hormone treatment.

The treatments were unable to prevent the cancer from spreading and as a result she was told that she has a limited life-span.

After winning the Esme Tombleson Person with MS of the Year Award for 2011 she felt proud and honoured saying:

“It feels really good to be acknowledged for what I’ve done over the years.”

“I was put in a wheelchair. I’m retired now. I

don’t have a good prognosis [for the

cancer] so I haven’t got very long here.”

“I have not only learnt a lot from Karen but find her a very motivating and inspirational person.”

Bruce Cameron, an influential member of the Multiple Sclerosis Society of Auckland and North Shore, was awarded the “caregiver of the year” award in recognition of the support he has given his wife over many years and for his work in the community.

His wife Margaret, who was diagnosed with MS some 20 years ago, worked as a primary school teacher up until 8 years ago.

The impact of Multiple Sclerosis eventually meant that she had to give up her job due to fatigue and an increasing lack of mobility. Since then her condition has

gradually worsened so that she now uses a wheelchair.

As her needs have increased her husband Bruce, now aged 64, had to manage the pressures of working and the increasing needs of his wife and home. In 2008 Bruce gave up his career and became a full time care giver looking after his wife’s needs and doing voluntary work in the community.

Bruce has been a committee member of the MS Society for 15 years and has been the Secretary for the local MS Society in Auckland for the last 10 years, where he was even appointed the manager for a brief period. During this time he has been involved with an incredible range of activities supporting our charity.

Bruce Cameron

Caregiver of the year

ms. voice Dec 2011 Page 23

Ahoy Captain!

Kate Thompson has faced more challenges than most teenagers. The 15 year old from Whitby was diagnosed with multiple sclerosis at the age of three. Hospital visits have become a part of her everyday life. She is spending less time at school and is now 80 per cent blind.

Kate’s attitude and outlook on life however, have not diminished, and her passion is being on, in or under the water. She has her diving certificate, is a proficient water-skier and attends the Sea Cadets in Mana whenever she can.

When her parents asked her

what her one wish was she replied without hesitation “I want to be the captain of a navy ship.”

The Make-A-Wish Foundation were able to make that wish come true. Kate, mum Carole and a friend from Sea Cadets attended the

After a difficult twelve months Kate Thompson was overjoyed to be made captain for the day

Page 24 ms. voice Dec 2011

“Thanks to Make-a-wish for granting Kate’s wish and to the NZ Navy for making it happen.”

70th anniversary celebrations of the navy, and then boarded a navy ship in Wellington Harbour

They spent three days and two nights on the HMNZS Otago. On the second day the captaincy was handed over to Kate. As captain she considered the recommendations of the

crew and decided what action to take. However Dave had to step in at one point when she would not allow the disgruntled crew to test the ammunition for the 50 caliber gun training.

Dave, the real captain, gave up his personal cabin for the day. She repaid him by raiding his fridge and

scoffing his cheese and crackers (she did allow him to come and have a mellowpuff though).

She made ship announcements, chose the morning songs that were played, the menu for that evening and oversaw the training exercises within the fleet which included man overboard drills, flag signal drills, light signal drills and fire drills.

They described the trip as “an absolutely fantastic experience and the crew were superb. Everyone of them was friendly and helpful and went well beyond what was expected to accommodate Kate’s wishes and ensure she enjoyed herself.

Kate’s father described the past 12 months as rough, with Kate spending time in intensive care fighting the condition. “It’s been pretty hellish, just continuous hospital stuff and treatments. Kate always looks for the bright side and something like this has come at the right time.”


As a therapist and coach working in private practice for nearly six years, I’ve worked with thousands of clients one on one and in groups. No matter what people come in with, It is very rare that we don’t end up working on the level of self-esteem. For some reason most of us need to improve the way we feel about ourselves.

Speaking personally, my own journey with self-esteem has been a long, significant one, and is absolutely continuous; I fully expect I will always be on this path to improving my relationship with myself. I hope to play a role, albeit brief, in your own journey.

Ask 10 different people and you will get 10 different definitions! I find the simplest way to think of it as self-regard, your regard for yourself:

Which includes:

How much you think you are worth

How valuable you think you are

Which is based on: What you believe about yourself (capabilities, attractiveness, intelligence)

How much you like and love yourself

How much you accept and approve of yourself

When our regard for ourselves is low, there is a pervasive feeling of not being good enough. This not-enoughness affects our choices in work, relationships, hobbies, finances and health and fitness. We either aim too low, or, are plagued with feelings of not doing a good

How we can

improve

our self esteemby Charlotte Hinksman

What is self esteem?


enough job.

When our regard for ourselves is higher, we feel whole inside, we accept ourselves for who we are - quirks and all. We approve of ourselves and take actions which honour and respect ourselves and our wellbeing. We know ourselves, and we like, and even love who we are. We know how much we are worth in our work, relationships, finances, health and fitness and make decisions and choices that reflect this worth.

A fresh perspective

A colleague of mine tells her story about being diagnosed with an eating disorder as a teenager: Anorexia Nervosa. She saw a therapist who told her “you need to get some self-esteem”. She left the session with a bit of paper that had self-esteem written on it. She stared at it for some time, trying to work out where she would get it from. The question for her was, how do you love

yourself, when you don’t? The answer is, of course, you can’t. However, you can learn how to DO it. There are many things you can do to start building a bridge between how you feel now, and how you want to feel.

This fresh way of thinking stops the delusion of viewing self-esteem as a thing that you either have or don’t have and need to get from somewhere. There is no solid part in your brain called “self-esteem”! It is therefore the process of self-esteeming that we need to put our attention to

Charlotte Hinksman is a master practitioner and life coach of NLP. She runs a private practice in Wellington.


and learn how to be doing it. Let’s learn how to be self-esteeming:

The self esteem cycles

As we now appreciate that self-esteem is a process - a combination of dynamic things that we do inside our heads as we interact with the world - the main three aspects of this process are:

Self-beliefs

Self-talk

Self-feeling

They work as a Cycle. A Cycle means a loop of thinking that ends up self-fulfilling. Let’s go through one example:

If I have a deep-rooted belief that no one cares about me, especially men, my behaviour and thinking in my relationship will stem from this. My behaviour might be I withdraw and hold back intimacy to stay safe. This would then feed into some negative self-talk, thoughts I have about myself: he prefers to hang out on his own, I am not attractive enough for him. This kind of thinking

would bring up certain feelings: worthlessness. These feelings and thoughts would change what I focus on and pay attention to: I notice strongly when he doesn’t text when he said he would and forget all the 10 times that day when he did text me. This focus would lead to some kind of other behaviour: I push him away further. This leads to a result: he says he gets frustrated, and if this carries on it will be too stressful to continue the relationship. This result then leads me to confirm my own belief to myself: see, I knew he didn’t care about me!

There are two different cycles - and only two - when it comes to self-esteem. You are either in:

an Esteeming Cycle - increasing your regard for yourself, or;a Desteeming Cycle - decreasing your regard for yourself

The best news about this, is that as soon as you notice you are in a Desteeming Cycle as in the example above, you can make a choice to bring it back to a more useful Esteeming Cycle. Plus, there is no word called other-esteem, there is only self-esteem, it is

about how you feel about you -which is totally and completely in your own power to change.

How to join the Esteeming Cycle

Just to be clear, we are not talking about a grandiose arrogant sense of self where we go around telling ourselves we are the best thing since sliced bread all day! For this may not be genuine self-esteem. More that we have a realistic, balanced and overall positive view of ourselves, we accept ourselves. Instead of beating ourselves up we are more generous towards ourselves; we forgive ourselves for mistakes, allow ourselves to be learning and evaluate ourselves fairly. We make choices respect us, as well as others.

I will be honest about this, this takes almost continuous awareness of what we are thinking to ourselves and a courage to own our behaviours and emotions: it is very easy to blame others for our low self-esteem, which is part of the Desteeming Cycle - you don’t text me enough, you don’t care about me, my boss doesn’t respect


me, she doesn’t notice my good work often enough. This outside focus is due to our brain’s powerful ability to focus on all those things that confirm our own limiting beliefs. Some of those things may be true, perhaps there was one time where your partner didn’t text or call when he/she said she was going to, or perhaps your boss forgot to praise your recent hard work. Yet, when we have a process of increasing our own regard for ourselves, these outside things seem to matter less and we can let them go. Whilst feedback from others is crucial to our growth and development, it no longer injures who we are deep inside - for this remains whole.

How to change track

Here is a very simple exercise which takes a bit of courage, awareness and the ability to make adjustments along the way. It will help you notice exactly what you are thinking and interrupt you in a Desteeming Cycle, before it gets you too low. You can then change track back into a fairer Esteeming Cycle again.

Here’s what you do

You will either notice you are feeling bad, or you will notice the Desteeming self-talk itself - which is likely to be a critical tone of voice in your head, telling you that you are stupid, not good enough, that you should’ve known better, etc.

So, once you notice either, or both, write down: The situation or context:

i.e. waiting for my partner to come home from work The self-feeling:

i.e. insecure, worthlessnessThe self-talk: what is the voice saying and what tone is it using?

i.e. of course he doesn’t want to spend time with you, you’re not attractive enough for him

A harsh, disappointed tone, quite loud If you took a guess, what’s the limiting self-belief underneath all of this?

i.e. No man has ever cared about me and therefore never willWhat would you prefer to

say to yourself and believe at this time? What tone of voice?

i.e. he is with you for a reason! Notice all those caring things he does for you every day! Everyone else has got a partner, you deserve one too, you are a good person.

A friendly, light, supportive tone, quiet

The more and more you interrupt this Disesteeming Cycle and and change track to a more Esteeming Cycle again, the more effective neural pathways you will be building in your brain, and the more you will get used to supporting yourself and befriending yourself. Don’t expect it to happen over night, it takes awareness and practice and it can be hard work. And it is totally worth it. You are totally worth it, remember?

About

Charlotte

Charlotte Hinksman is a master practitioner and life coach of NLP. She runs a private practice in Wellington.

Please go to:

www.charlottehinksman.com.


ms. voice Dec 2011

The summer heat can be unwelcome for many people with Multiple Sclerosis who experience a temporary worsening of symptoms when they have an increase in body temperature. It is thought that these temporary changes occur because the nerves, lacking insulation from the damaged myelin sheath becomes highly sensitive to heat. The temperature effect is often described as Uhthoff’s phenomenon,(1) after Dr. Wilhelm Uhthoff who first described it in 1890.

This worsening of symptoms, however, generally disappears when body temperature returns to normal. There are also solutions to minimise the impact heat has on your ability to do what you need and want to do.

Choosing the right type of clothing can help keep

you cool. Some people with MS experience both heat and cold sensitivity. If warm clothing is put on in the morning, it is important to monitor the temperature during the day and adjust clothing to avoid overheating as the day gets warmer.

Wear lightweight, loose and open around the neck. Select clothing which is made of materials which are ‘breathable’ and choose light-colours which reflect the light rather than black or dark colours which

Keep your body

cool

the

Managing the effects

of temperature sensitivity

during the summer

Beat Heat

the

absorb heat. Wear a wide brimmed hat or use a sun umbrella to keep shady.

There are lots of cooling products such as cooling neck ties, hats or vests on the market but you can just as easily freeze a washer or scarf overnight and take it out with you.

It is important to drink plenty of fluids. Fill a reusable drink bottle half way and freeze it. Top it up with water just before you head out.

Using a small personal fan can help to keep you cool, but is even more effective if combined with a spray bottle or cooling garment

An important part of keeping out of the heat is to be prepared and plan ahead. Listen to the weather reports ahead of time so that you can plan your day or week. Be flexible in your plans on really hot days and be prepared to be able to

1. Keep your feet cool by rolling a frozen bottle of water backwards andforwards under your feet.

2. Make sure you have various sizes of cooler bags and bricks, suitablefor all occasions.

3. Personal misting fans are useful, as is a simple spray bottle.

4. Have a cool shower in the hottest part of the day and another one justbefore you go to bed.

5. Avoid exercising or activities during the hottest part of the day

6. Avoid hot environments like kitchens or very sunny rooms and avoid long car trips where possible

Ten Tips for staying

cool

Escaping the heat


ms. voice Dec 2011

do less on these days.

If possible plan to go out in the cooler part of the day or plan rest periods during the warmer part of the day. If you are out all day if you need to plan to rest somewhere cool during the hottest period of the day.

When you are planning trips enquire beforehand as to whether locations are air conditioned.

Try to ensure that you have an air conditioned vehicle and have your air conditioning checked on a regular basis. If parking outside find a spot undercover if possible, or use a sun shield on the windscreen to keep the heat out.

Cool Foods

Although eating or drinking something that is cooler than actual body temperature will initially produce a cooling effect, the digestion, absorption, transportation and metabolism of nutrients all require energy, which generates heat.

Eating cold foods alone will not necessarily lower your body temperature

for a prolonged period as the body is physiologically programmed to respond to energy (heat) loss by increasing blood flow to the part of the body being cooled and raising the temperature back to normal.However, a meal that combines lean protein foods (lean meats, poultry, fish, eggs, legumes or nuts) with the right amounts and types of fats (mono-unsaturated and polyunsaturated), plenty of vegetables and just the right amount of wholegrain carbohydrates (wholegrain breads and cereals,pasta and rice), will keep your nutrition levels up, and won’t over-work the body during digestion.

Overall, it’s important not to skip meals. If your appetite is affected by the heat try to have small, frequent meals. Some ‘cool’ snacks include smoothies, fruit and sorbets, or, for an ice cold snack, freeze some grapes or berries. In hot weather foods such salads and sandwiches are a good alternative to cooked meals.

It is very important to stay hydrated during summer. As well as replacing fluids

lost through perspiration and evaporation, core body temperature can be affected by how much water you have in your muscles, blood and cells.

Many symptoms of excess summer heat (e.g., dizziness, fatigue) can be attributed to chronic dehydration, so aim for eight glasses (or two litres) of fluid per day.

Make sure you get plenty of water during the day, no matter what else you drink. Drinks can include milk, tea, diluted fruit juices or vegetable juices, however, sport beverages (laden with sodium and sugar) can actually make dehydration worse, as can alcohol. Limit caffeine, which can interfere with sleep and consequently add to feelings of fatigue. To make water a bit more interesting, try adding a quarter of a cup of fruit juice or a dash of cordial.

Exercising during the summer can be challenging due to the increased risk of overheating and it may be tempting to avoid physical activity altogether in the warmer months. However

Stay

Cool foods

hydrated

Exercise &

physical activity

ms. voice Sept 2011 Page 33

it is important to stay active all year round to maintain general health and fitness, as it can help manage fatigue, improve your mood, and minimise the impact of MS. Nevertheless, it is important to make a few adjustments to any exercise regime in summer to avoid overheating.

When you exercise find the right time and place. Find a cool environment in which to exercise. If you are exercising outside avoid the middle of the day when it is hottest.

Pace yourself by starting to exercise gently and and stop and rest if you start to feel overheated. You might also consider using cooling scarves or keeping a water spray bottle handy should you need it. It is also important to cool down and rest after exercise.

Some activities such as tai chi and swimming are also more suitable for warmer weather.If exercising in a pool consider the surrounding environment. Indoor pools may have humid surroundings that could contribute to feeling overheated and fatigued.

1. Keeping Cool – Managing Multiple Sclerosis Fatigue. A handout compiled by Amanda Meos and Amber Nicholson, Multiple Sclerosis SocietySA and NT, May 2004.

2. Compston, A. et al. (2005) McAlpine’s Multiple Sclerosis(Fourth Edition). Churchill Livingstone, Elsevier, p465-6.

3. Summer’s Coming: Plan to Cool it! Inside MS, National Multiple Sclerosis Society, April-June 2004, Vol.22, Issue 2.

4. Managing Heat Sensitivity –Information about CoolingGarments, compiled by Julie Becke, MS NSW/VIC Lifestyle Services, September 2006.

5. Body Cooling and SymptomReduction in People with Multiple Sclerosis, compiled by Jo Fairburn, Enhanced Lifestyle Service Manager, September 2003.

6. Brown, T. R. and Kraft, G. H. (2005) Exercise and rehabilitation for individuals with multiple sclerosis. Physical Medicine andRehabilitation clinics of North America, 16, 513-55

7. Karpatkin, H. I. (2005) Multiple sclerosis and exercise. A review of the evidence. International Journal of MS Care.

8. Compston, A. et al. (2005) McAlpine’s Multiple Sclerosis(Fourth Edition). Churchill Livingstone, Elsevier, p639.

9. Polman, C. et al. (2006) Multiple Sclerosis, The guide to treatment and management

7. Wear light-coloured, cotton clothing

8. Keep your head covered

9. Avoid direct sunlight

10. Look for air-conditioned places

11. Increase your fluid intake

12. Keep a hand-held mini-fan in your bag

13. Moisten clothing using a water spray

14. Sports sweat bands dipped in cold water and put on both wrists

15. Drinking cold liquids & sucking ice cubes

16. Freeze a water bottle or a clothe to take out with yourself.

Further reading


Esme Tombleson Awards

Your perfect travel companion.t t l i

Serviced Apartments

Call 0800 944 400 or visitwww.questapartments.co.nz

The Quest to serve andaccommodate personal needs.

Quest Serviced Apartments offers far more than just comfortable accommodation. We provide accessible apartments which feature kitchen and laundry facilities along with spacious living areas. Our apartments provide our guests with a private and fl exible environment with the option to enjoy the guest services that are available.

ms voice dec 2011

Documents