Wellington Multiple Sclerosis Society Spring/Summer 2013 Newsletter

From the Editor

Disclaimer: The views and opinions expressed in this newsletter are those of the authors and not necessarily those of the Wellington Multiple Sclerosis Society. The Wellington Multiple Sclerosis Society accepts no responsibility for accuracy of information contained within this newsletter.

Wellington Multiple Sclerosis Society Inc. Office Details Wgtn Ph (04) 388-8127 PO Box 15024 Kapiti Ph (04) 298-8887 Wellington 6243 Wairarapa Ph (06) 372-3414 Fax: (04) 976-1232

Email [email protected] Website www.mswellington.org.nz

W elcome to the Spring/Summer bumper edition of the Wellington Multiple Sclerosis Society newsletter.

We’ve had a busy few months since our last newsletter. Our annual Charity Spring Fling Ball was held on the 31st of August and we received fantastic support for the event, page 5 has a selection of photos from the event. Also the great people from Works Wonders ran a charity clothes swap on the 21st of September another fantastic event.

Other articles of interest in this edition include a very inspirational story by Janette Keown on traveling with MS and an informative article on ‘Money Matters’ by Rachel Stevenson. Research news and two book reviews are also in the line-up.

With Christmas quickly creeping up on us I would just like to say thank you from the committee to everyone for your support over the year. Wishing you all a very safe and merry Christmas and new year.

Until next time, happy reading.

Regards

email: [email protected]

Hamish

We are on facebook www.facebook.com/mswgtn and click on the ‘Like’ button, that way whenever we post something new to the page you’ll see it.

SPRING/SUMMER 2013 EDITION

Thanks To Our Supporters

+ Jack Jeffs Charitable Trust

Contents

From the Editor 1

Fieldworkers Report 2

News and Events 3 - 5 My Personal Story 6

Money Matters 7 - 8

Wellbeing Information 9 - 10

Emergency Planning Guide 11

Research Information 12 - 14

Book Reviews 15 - 16

Insurance Advice 16

Wellington MS Society Inc.

President: Hamish Bockett- Smith Vice President: Carrie Philliskirk Secretary: Carrie Philliskirk Treasurer: William (Bill) Pitt

Committee Rachel Pentecost

2

There are glimpses of summer

ahead as we transit out of what

has been a long cold winter

exacerbated with storms and

earthquakes. I hope that you

have all organized yourself well for

emergency preparation after many were without power in

June’s storm and a lot of people literally quite shaken by the

mid-winter earthquake episodes. These events which are

out of our control highlight the importance of being prepared

for the unknown and having a through emergency kit and

plan in place. It is a good idea to have a list of family and

neighbours phone numbers on the wall that is easily visible,

especially if you live by yourself.

Community networking is also a good idea. Some people

don’t know their neighbours very well. The people next

door are the most accessible to you and it is a good idea to

have some sort of contact with those who live within close

proximity so that they are inclined to check on you in a state

of emergency.

Congratulations to the disability advocacy group who

successfully rallied the Kapiti District Council to provide a

ramp for wheelchair and disability access at the new Aquatic

Centre. The ramp is forecast to be fitted and operational

by October this year and disability support groups are being

offered a celebration ceremony when it has been installed.

As swimming and aqua jogging are excellent forms of

exercise for multiple sclerosis it wonderful that you will have

a new facility with safe access. Well done to all those who

spoke up and motivated others to urge the council to obtain

the ramp!

Sue, Gillian and myself have all been active in the

community responding to calls and referrals throughout the

area. As we are client driven within our work this means

if you need to see us send an email or give us a call. We

would really like to see you at the support groups, new

participants are always welcome.

The Kapiti group meets with Gillian on the second Monday

of each month at the Paraparaumu Community Centre

for morning tea and local speakers are invited. Sue has a

A note from your Fieldworkers…support Groups in Wairarapa at MetLife care in Masterton

at the end of the month on a Friday for afternoon tea. She

is also wanting to start up a group in South Wairarapa. If

you live in the area and are interested please phone her (06)

3723414.

The Aotea Group meets on the second Tuesday of each

month at Café Devine in Aotea Summerset. Charlotte

attends this group and you buy your lunch and we eat

together. It would be really great to have new members

come to this group. If you are living in the Porirua area and

are at home during the day why not come along?

Support groups are an excellent way to maintain regular

contact with your fieldworker. It is a good opportunity to

meet other people who live with MS and to find ways to

support each other and have a laugh together. We invite

speakers to provide relevant information to help assist you in

various aspects of MS symptom management.

The Upper and Lower Hutt groups continue to have high

attendance. The Moose Group also is active with speakers

on alternative evenings. If you are working and live in the

Wellington area and would like to meet with other motivated

people with MS then this is the group for you. Gillian has

begun a similar evening group in Kapiti on the second

Thursday of the month for working people with MS in the

coastal region held at Montheith’s; please contact her if you

are interested in coming along.

The Yoga group in Johnsonville is also highly attended.

This group meets every Thursday morning at 9.30. You are

welcome to come to this group if you can get up and down

from the floor. Give Charlotte a call to find out more.

Wellington MS has recently become involved in a research

trial conducted by Otago University and MS-PD Canterbury.

This trial is called Minimising Fatigue Maximizing Life. The

trial involved a six week practical course to PwMS who

experience fatigue. A local Physiotherapist was been

trained to facilitate the course which we hope will be offered

to the Wellington MS community on a regular basis. The

course covered understanding your specific fatigue triggers,

how to maximize your energy, covering such topics like

from wellington’s Fieldworkers: By Charlotte Hathawayf

Page 2 Wellington Multiple Sclerosis Society Inc. Spring/Summer 2013 Newsletter

3

wellington ms societyNews and Events:

Charlotte

➚

NEWS: Take Note - A Dance Extravaganzaimproving sleep, exercise, managing heat, body mechanics,

nutrition and meals, improving mood, health professionals

and equipment that can help you. The only criteria for

this course are that the participants experience fatigue

and that you are motivated to take steps to learn fatigue

management strategies. If you think you will be interested in

future courses please advise your fieldworker.

As always take time to look after yourself. Ensure that

you are taking increased doses of vitamin D and omega

oils. Keep your protein levels high through regular healthy

snacking. Maintain a regular gentle exercise regime,

practice conscious breathing and meditate (in whatever form

is suitable for you). These simple practices of wellbeing

will support your immune and nervous system. I encourage

you to foster an element of kindness towards yourself to

take care of your body as you would an infant or a loved

one.

Sue, Gillian and I are available to offer you support

information, education and advocacy. We can assist you in

redirecting you to various health professionals and work to

connect you with the appropriate social services. We aim to

assist you to be active in your wellbeing and increase your

quality of life. Please contact us either by phone 3888 127

or online at either charlotte, sue or gillian@mswellington.

org.nz

Be well, be safe and stay connected

Kind regards.

Produced and directed by Jo Marie Mills in conjunction with Whitireia New Zealand was held on the 14th and 15th of June at the Whitireia Performance Centre. The performers put on a fantastic and entertaining show performing many wonderful acts which include, Tap, Jazz , Circus, Musical Theatre.

All proceeds from ticket sales and donations went to the Wellington Multiple Sclerosis Society and $1700 was raised, and fantastic result!

Many thanks for Jo and the performers for such a great event and for helping us to raise the profile of MS in the Wellington region.

NEWS: Southern Cross Charity of the Month

Passionate about supporting and growing its local culture The Southern Cross is delighted to present the Charity of the Month! Each month they help a different local Te Aro or Wellington charity by putting a donation box beside our Free BBQ each Friday, Saturday and Sunday.

The Wellington Multiple Sclerosis Society was selected as their Charity of the Month for May and a total of $611 was raised. Many thanks to the Southern Cross for supporting us.

We are pleased to announce that Rydges Hotels & Resorts New Zealand have established an accommodation commission partnership with the Wellington Multiple Sclerosis Society.

The Rydges Hotels New Zealand includes Rydges Auckland, Rydges Wellington, Rydges Rotorua, Rydges Latimer Christchurch and Rydges Lakeland Queenstown Resort.

Booking your accommodation at any one of Rydges Hotels will not only gives you access to the best available rates but also earns Wellington MS a 10% commission.

This offer is open to anyone who wishes to stay at a Rydges Hotel. Please feel free to let friends and family know about this deal as it is another great way of support Wellington MS.

To take up this offer bookings must be made via www.rydges.co.nz using the Corporate ID: MLPWEB

Note: Room rates are dynamic and will fluctuate with availability.

NEWS: Wellington MS Rydges Hotels Partnership

Wellington Multiple Sclerosis Society Inc. Spring/Summer 2013 Newsletter Page 3

4

wellington ms societyNews and Events:

WorksWonders inspires women to achieve a better work life / balance through their workshops, coaching and online products. And, as part of a give back to the community, they host Clothes Swaps for a Cause. www.workswonders.co.nz

On Saturday 21 September WorksWonders ran a Clothes Swap in Pukerua Bay with all proceeds of $928.30 going to Wellington MS. It was a great day with a real vibe, lots of successful outfits swapped, some fabulous raffles and a delicious afternoon tea.

NEWS: Clothes Swap for a Cause

EVENT: 2013 Wellington MS Spring Fling Ball

Our 2013 Spring Fling Charity Ball held on Saturday 31st August and was a fantastic event! This year we raised $12,500 from the night nearly 3 times as much as we did the previous year. Each year our charity ball seems to get better and better!

The Dufraines provided the music for the night and kept the dance floor jam-packed throughout the night with their tunes. The raffles and auctions were well supported with some amazing prizes from local and national business. The food provided by the Rydges Wellington was yummy with just the right amount of everything.

Two other highlights from the night was the Lolly Buffet and the Photo Booth which at times had a lengthy queue while everyone was waiting to get their entertaining shots with friends.

A big thank you to all our sponsors for supporting us the Wellington Multiple Sclerosis Society, we really appreciate your support. Also a big thank you to Sally-Ann Moffat and More FMs Justin Rae, you guys rock!

EVENT: South Wairarapa Support Group

Sue Johnston our Wairarapa based fieldworker is looking to start a support group in the South Wairarapa, a coffee at a local café and if anyone is interested.

Please contact Sue on (06) 372-3414 or email [email protected] if you are interested.


5Photos by Daniel Panter - PictureThis Photography www.picturethisnz.com

Photo Booth photos by Photo Booth Fun www.photoboothfun.co.nz

6

It was only four months ago that I lay in bed on a Sunday night reflecting on what I had missed out on because of my health. Travel had always been on my wishlist and in 1997 my then husband and I travelled around the UK and northern France. At that stage I was able to walk for short distances with a stick. We hired a manual wheelchair this end and it made a lot of difference to my fatigue level and the amount of sightseeing done.

A Mediterranean cruise appealed to me and so the next day I found myself sitting in the travel agent’s office listening to the various options available. A lot of planning was needed as everything from the neck up still worked for me (some would debate this!) but my right hand is the only mobile part of the rest of my body.

I had a very capable caregiver who was only too happy to come with me and so our planning started. My travel agent was very good with suggesting which airline to fly with, which cruise line to go with, and why. He requested assistance for us at each airport and this certainly made things easier for us.

We flew to Dubai where a taxi van was waiting to take me in my electric chair and caregiver to our hotel (disabled facilities) for a couple of nights to break our journey. We then flew to Venice where we met up with our cruise ship. We left the next day, arriving at Split, Croatia the following. From then on, we cruised at night arriving at a different port each morning; we visited Dubrovnik (Croatia), Corfu (Greece), Naples, Civitavecchia (Rome), Livorno (Florence), Monaco, Marseilles and ending the cruise in Barcelona. We spent a further three nights in a hotel there, and then flew to Dubai for two nights before coming home. We were away 22 days and were pleased to be home.

On board our ship we had a verandah stateroom which was wheelchair friendly and a big wet area bathroom. I rented a lifting hoist from an American company which was in our room when we arrived and was collected after we left.

I had found another American company that specialized in travelling for disabled and it was through them that I organized three separate one-day tours

for our three Italian ports. A van with a hoist/ramp to transport me in my powerchair as well as an English speaking guide was provided with each tour. I felt that the money spent on these individual tours were well worth it. Transfers from airport to hotel/ship and reverse were all organized by the travel agent

The whole experience has given me such a boost and I am now thinking about where I might like to go next year!

If there are any PwMS who would like to discuss travelling as a disabled person, please feel free to either email me at [email protected] or phone me at 04-9700867.

Don’t Let Multiple Sclerosis Put You Off Travelling!My Personal Story.by Janette Keown

It just goes to show that even with Multiple Sclerosis you can still live your dreams with a little planning.

Well done, a truly inspiring story Janette!


7

Mmoney Matters:

Money Matters: Part One By Rachel Stevenson

Money stresses are one of the least mentioned side-effects of MS. They affect us very personally and limit us in what we do every day as well as our future plans. Loss of income and earning potential, often at a young age, put as at a significant disadvantage and may mean we have to rely on financial assistance from the government, family and friends. Yet sound financial management can put us in good stead for whatever the future brings and help us maintain our independence.

This is the first in a series of articles on money matters. Whether you lack confidence in this area or are already fluent in financial matters we hope you’ll gain something from it. Here are some pointers to start with:

1. Know that you are the best person to decide the right approach for your unique circumstances. Listen to others’ advice but consider for yourself whether it is appropriate.

2. Learn a bit about money every day; read the business section of the newspaper, listen to the business news on the radio, follow web-sites such as interest.co.nz. In time you will gain a sound understanding and develop your own “smell test” for good and bad investment decisions.

3. Never act in haste. Most financial decisions are for the long term (five years or more), so should be given proper consideration. Gather information, let ideas percolate and only take action when you are fully comfortable that you understand what is required of you and what the risks are. If someone tries to hurry you into a decision it’s probably more in their interest than yours.

4. Don’t be intimidated by financial speak. If you don’t understand an offer, keep asking questions until you do, and if you still don’t understand it then don’t go there.

5. Never pay interest on a credit card or hire purchase. But you probably already knew that...

In this issue we have asked Trustees Executors to provide a brief overview of the main things you should consider when planning your personal finances.

continued on next page

We will have other financial topics we'd like to cover in the future issues, however please feel free to write in if"

• There is a particular topic you’d like us to cover

• You have a question about money that you’d like answered

• You’ve learnt something that you’d like to share with others affected by MS

Summary of Estate Planning

• Generating a regular cashflow from your accumulated investment assets;

• Preserving your capital and assets;

• Ensuring your wishes and circumstances are adequately reflected in a Will;

• Retaining your dignity if you are unable to manage your own affairs;

• Managing the orderly transfer of assets to chosen beneficiaries;

• Setting up a fund to meet funeral costs.

Do I need a Will?

A Will provides you the peace of mind that your wishes for the transfer of assets are captured in a legal manner. To die without a Will can mean unnecessary expense and stress for those left behind.

Your Will should show:

• How your estate is to be distributed;

• Who is the executor of your Will;

• The legal guardians of dependants;

• Other important issues such as charity bequests, distribution of valuables, funeral instructions.

A Will needs to be reviewed regularly, particularly if:

• Your relationship, financial situation or assets change;

• You wish to alter beneficiaries, executors or trustees named in the current Will;

• A change to beneficiaries/children’s marital or personal situation.


8

Mmoney Matters: continued

What is an Enduring Power of Attorney (EPA)

An EPA is the Living Will – it allows you to legally appoint another person or entity (the attorney) to manage your affairs, should become unable to do so. There are two types of EPAs– one specific to your welfare and the other for your property.

By having an EPA in place, you can avoid difficulties and costs that may be involved should you lose mental or physical capability. You can retain a degree of control and dignity by ensuring a trusted third party will act on your behalf in your best interests, and in the manner that you would expect.

Is a family Trust right for me?

A family Trust will provide confidence and certainty – peace of mind that your assets will pass on to your nominated beneficiaries in an efficient manner.

A properly structured Trust allows you to;

• plan the management of your assets during your lifetime;

• ensure these assets will go to the people you want, in the way you want, when you want – all while you are still living.

Some reasons for establishing a Trust, that you need to consider:

• Safeguarding assets – protection against personal and business related claims or relationship breakdowns;

• Avoiding claims against your estate;

• Providing for family – education costs, or assisting those with a physical or other disability;

• To provide for funeral costs;

• To provide long term support to a charity.

It is therefore essential that you choose a trustee with specialist knowledge, experience, continuity and reliability. It is important to seek advice from an organisation that offers comprehensive advice and different trust structures to cater for a wide range of circumstances.

Do I need to review my Investments?

When did you last review your financial plan? Are your financial assets adequately preserved and protected? Will there be sufficient cashflow to support your chosen lifestyle in the future?

Planning the additional cashflow for the future can be tricky. It therefore becomes even more important to ensure your portfolio is positioned correctly to provide for your required outcomes. It is also paramount for a financial plan to be implemented in harmony with other Estate Planning affairs –Wills, Enduring Powers of Attorney and Trusts.

Your security comes from knowing your affairs are being handled by professionals in a professional trustee company, where the heart of the trustee’s duty is to always act in the client’s best interest.

Please Note: This article was written with help from The Trustees Executors.

Advertisement The Trustees Executors reputation has been built on the quality of personal advice and service for over 130 years.We understand the emotional and delicate nature of estate and financial planning. We provide the right facilities and advice necessary to manage your affairs throughout your lifetime and beyond.

Our specialist professionals include legal, accounting and investment services. The convenience of this gives you total estate planning requirements with one reliable, reputable, cost efficient provider.


9

wellbeingInformation:

WELLBEING: Olive Leaf - Olea europaea by Gillian Fry

gWinter is often a time when we are more susceptible to coughs, colds, flu’s and so on. Add in the complication of multiples sclerosis and we wonder what type of natural remedy could be beneficial?

Olive leaf could be a useful supplement to discuss with your primary health care provider. It has a number of properties including:

• Anti-viral,antibacterial,antifungal • Antioxidantpropertiestopreventoxidativestress

Olive leaf was believed to be first used medicinally in Ancient Egypt where it was considered to be a symbol of heavenly power. Its oil was extracted and used it to mummify their kings. Over the time, there is evidence that it was a popular remedy for treating fevers and malaria. Today it has become known for boosting the immune system, with a number of studies underway investigating the extract's full properties. As well as supporting the immune system, the reported benefits of olive leaf extract include promoting increased energy, maintaining healthy blood pressure and improving circulation.

Antibiotics may be necessary in some instances however their action is indiscriminate of whether the bacteria is “good or bad” which means your intestinal flora is compromised creating susceptibility to further infection/imbalances, and some bugs are becoming resistance to antibiotic therapies. Olive leaf, sometimes termed “nature’s antibiotic,” works at the cellular level to strengthen the body's immune response. The oleuropein compound in olive leaf is a natural wide-spectrum antibiotic, anti-bacterial, anti-viral, and anti-fungal. Olive leaf searches out “bad bacteria” and inactivates it by dissolving the outer lining of the bug and then penetrates the infected cells, inhibiting the replication of bacteria. From a viral perspective, Olive leaf interferes with the establishment and reproduction of a viral infection.

When a person has a chronic illness, they will be experiencing a level of oxidative stress through free radical damage. Free radicals are formed as natural by-products of metabolism, which (in excess) can harm the walls and structure of cells, damaging the genetic material inside a cell, and cause disease. Antioxidants are required to

‘mop up’ free radicals. Olive leaf extract contains some powerful antioxidants, phytochemicals, tannins and calcium, which may not only be beneficial in supporting the immune systems but also in managing chronic illnesses.

Some evidence suggests that olive leaf extract may help improve multiple sclerosis and other conditions related to degeneration of the nerves. A study published in June 2009 in "Clinical Nutrition" found that olive leaf extract reduced the severity of nerve damage in a rat model of multiple sclerosis (Called EAE). The results presented in this paper strongly suggest that a Dry Olive Leaf Extract (DOLE)-enriched diet has a beneficial effect in EAE in rats. Further studies in humans are required in order to investigate if DOLE could be a useful supplement for patients suffering from multiple sclerosis and other neuroinflammatory disorders.

Supplements may interact with other supplements, medication and/or foods, or be inappropriate for some health conditions, so it is important for your own health and safety that you discuss your supplements/medication with your GP, or primary health provider.

References http://www.ncbi.nlm.nih.gov/pubmed/19386399 Nutritional Healing – Phyllis A. Balch, pages 88, 118, 220 Lani Lopez – Natural Health A New Zealand A-Z Guide pages 70, 112, 114, 164, 176, 233, 263

Do you buy from Organic Boxes?

http://organicboxes.co.nz

If so you can now help the Wellington Multiple Sclerosis Society raise funds.

Simply add WELLMS2013 into the voucher code field when you are making your order.

Wellington MS receives $3 from each box delivered each week.


10

With so much emphasis on what to eat, the ‘how’ can get left behind. But the full process of digestion – breaking down and absorbing food is significantly benefited by a calm and relaxed demeanour both before during and after you eat. When this is compromised, partially digested food in the gut can cause gas, bloating and contribute to aggravated colon symptoms.

Time, stress and habit often see us bolting food or eating on the go without much thought. Optimal digestion needs energy resources fully directed to the gut and any moment quickly re-routes it out into the muscle: including just standing and using postural muscles. Stress also sends a signal to prepare for protective physical movement, and again, muscle wins out. We feel a tense body, often including gripping and tightness in the belly as digestive process are halted. Our digestive tract has nervous system activity of its own and you really can trust ‘gut feelings’ as a measure of stress.

It is the parasympathetic or calming nervous system – often known as ‘rest and digest’ that needs to be set in place for us to feel ready to receive and process food put into our moths. Sitting down is the first step, but then all of the awareness, breathing space and being in the here and now is the best guide towards more mindful eating patterns.

If you have become used to rushing your meals, reconnecting with the art of chewing is an important part of your overall health. Full mastication means food is lubricated by saliva that starts off the digestive process and gets your gut in the mood to receive and breakdown food. It also sends signals to the brain to start feelings of satisfaction, thus helping to regulate the appetite.

How to eat:

Connect to your body – particularly if you have been stressed before, move assay for the busy brain state that can get in the way of considered chewing. Before you pick up your fork, palsy your hands onto your belly (a little apart to not impede its movement) and allow full exhalations to let it settle and soften, ready to receive food.

Just eat – our brains love distraction and will commandeer energy whenever they can, using up to two-thirds of our energy output at any given time. Make you digestion the main focus by eating away from TV, computer and phone.

WELLBEING: Mindful Eating by Charlotte Hathaway

wellbeingInformation: continued g

Mindful eating – mindfulness means experience every present moment with all of our senses, so when eating this is not just the taste of food but how it looks, smells and fells in your mouth. Slow right down and you can feel all the rich subtleties of your meal rather than ‘didn’t touch the sides’ feeling.

Allow time for digestion – don’t just get up and rush off after a meal: digestion is a process that takes several hours and the more space you can create for little competition with other activities, the more efficient the process. If you tend to fell tired after meals, this can be your body telling you to stay put and give your digestion some attention.

Are you or someone you know into cycling in a big way, if so we might just have the challenge for you! The annual BDO Wellington to Auckland Corporate Cycle Challenge on 9-15 February 2014 has nominated Multiple Sclerosis New Zealand as the chosen charity for the event.

Departing from the main street in Lower Hutt and finishing in Pukekohe, each day is divided into one or two stages covering anywhere from 38km – 122kms. All abilities are welcome to participate – elite riders, competitive masters, weekend warriors, cycling tourists, and social or corporate teams – this is a fun week with a great bunch.

The overall winning team wins the grand prize of $100,000 of products and services gifted to their chosen charity.

We are looking for riders to make up a team or an corporate to battle it out with other firms on behalf of the Wellington Multiple Sclerosis Society.

If you are interested or know of any cyclists that may be interested in forming a team, please contact Hamish on 974-5530 or email [email protected] for more information.


11

WELLBEING: Emergency Planning Guide Are you prepared? by Charlotte Hathaway

wellbeingInformation: continued g

With recent earthquakes, severe storms around the country now is the time to ensure that you are prepared as best as you can to remain safe in a natural disaster. The Wellington Regional Civil Defence provide an in-depth emergency planning guide. If you have not already we highly recommend that you obtain a copy of this planning guide and take active steps to ensure that you have some safety plans in place.

HOUSEHOLD EMERGENCY PLAN

A household emergency plan is a personalised action plan that lets each member of a household know what to do in a particular emergency situation and how to be prepared in advance. One you know what emergencies are possible in your area, have a house hold meeting to talk about how to prepare and how to respond if an emergency should occur. Plan to share responsibilities and to work together as a team.

MAKE SURE YOU KNOW THE FOLLOWING:

What to do in case household members are separated. Keep it simple:

• Pick two places to meet

• Pick two out of town contacts.

SENIORS AND PEOPLE WITH DISABILITIES

People with disabilities need to ensure that support plans are set up in place.

Set up a Personal Support Network:

Create a network of relatives, friends and neighbours to check on your in and emergency and to help with evacuation or sheltering-in-place. By having a larger number of people identified you will increase your chances of someone being available to assist when the emergency occurs.

Essential items – maintain a list of important items and store in an easily accessible place. Give copies of the list to those people you have identified to assist you.

Important items might include:

• Special equipment and supplies e.g. hearing aide batteries

• Current prescript name, sources and dosages

• Names addresses and telephone numbers of your doctors and pharmacists

• Detailed information about the specification of your medication or medial regime.

Personal Care Assistance – if you receive assistance from a home healthcare agency or home support provider, find out how the prove will respond in an emergency. Designate back up or alternative provides that you can contact in an emergency.

For Persons Using a Wheelchair – plan for how you will evacuate in an emergency and discuss it with your care providers. If you use a motorized wheelchair, have a manila wheelchair as a backup.

For Persons who are Blind or Visually Impaired – keep an extra cane by our bed, even if you use a guide dog.

For Persons who are Hearing Impaired – keep extra batteries for your hearing aids with emergency supplies.

For Person with Communication Disabilities – store a writing pad and pencils as part of your emergency items and in your Getaway Kit.

Identification – wear a medical alert tag of bracelet to identify your disability in case of an emergency. These may save your life if you are in need of medical attention and unable to communicate.

People with disabilities have the same choices as other community residents about whether to evacuate their home and where to go when an emergency threatens. Decide whether it is better to leave the area, stay with a friend, or go to a public shelter.

By Charlotte Hathaway adapted from the Civil Defence Booklet.


12

research Information:

C. perfringens, found in soil, is one of the most common bacteria in the world. It is divided into five types. C. perfringens type A is commonly found in the human gastrointestinal tract and is believed to be largely harmless.

C. perfringens types B and D carry a gene (epsilon toxin) that emits a protoxin -- a non-active precursor form of the toxin -- which is turned into the potent "epsilon" toxin within the intestines of grazing animals. The epsilon toxin travels through the blood to the brain, where it damages brain blood vessels and myelin, the insulation protecting neurons, resulting in MS-like symptoms in the animals.

While the D subtype has only been found in two people, based on prior studies by other investigators, the B subtype had never been found in humans.

Nevertheless, Rumah and the research team set out to see if subtypes B or D exist in humans and if they are associated with MS. They tested banked blood and spinal fluid from both MS patients and healthy controls for antibody reactivity to the epsilon toxin. Investigators found that levels of epsilon toxin antibodies in MS patients were 10 times higher than in the healthy controls -- the blood of only one out of 100 control participants showed an immune reaction to the toxin.

The team also examined stool samples from both MS patients and healthy controls enrolled in the HITMS clinical study, and found that 52 percent of healthy controls carried the A subtype compared to 23 percent of MS patients. "This is important because it is believed that the type A bacterium competes with the other subtypes for resources, so that makes it potentially protective against being colonized by epsilon toxin secreting subtypes and developing MS," say Rumah and Vartanian.

The search by investigators for evidence of C. perfringens type B paid off in the case of a young MS patient. Co-author Dr. Jennifer Linden, a microbiologist at Weill Cornell Medical College, isolated the actual bacterium from the patient's stool.

A choice of approaches for treatment

The authors suspect that once a human is infected with C. perfringens type B or D, the pathogen usually lives in the gut as an endospore, a seed-like structure that allows some bacteria to remain dormant for long periods. "The human gastrointestinal tract is host to approximately 1,000 different bacterial species, but is not a hospitable environment for

A research team from Weill Cornell Medical College and The Rockefeller University has identified a bacterium it believes may trigger multiple sclerosis (MS), a chronic, debilitating disorder that damages myelin forming cells in the brain and spinal cord.

Their study, published in PLoS ONE, is the first to identify the bacterium, Clostridium (C.) perfringens type B, in humans.

The scientists say their study is small and must be expanded before a definitive connection between the pathogen and MS can be made, but they also say their findings are so intriguing that they have already begun to work on new treatments for the disease.

"This bacterium produces a toxin that we normally think humans never encounter. That we identified this bacterium in a human is important enough, but the fact that it is present in MS patients is truly significant because the toxin targets the exact tissues damaged during the acute MS disease process," say the study's first author, K. Rashid Rumah, an MD/PhD student at Weill Cornell Medical College, and the study's senior investigator, Dr. Timothy Vartanian, professor of neurology and neuroscience at Weill Cornell Medical College and director of the Judith Jaffe Multiple Sclerosis Center at New York-Presbyterian Hospital/Weill Cornell Medical Center.

"While it is clear that new MS disease activity requires an environmental trigger, the identity of this trigger has eluded the MS scientific community for decades," Dr. Vartanian says. "Work is underway to test our hypothesis that the environmental trigger for MS lays within the microbiome, the ecosystem of bacteria that populates the gastrointestinal tract and other body habitats of MS patients."

Connection to MS in grazing animals

The study describes discovery of C. perfringens type B in a 21-year-old woman who was experiencing a flare-up of her MS.

The woman was part of the Harboring the Initial Trigger for MS (HITMS) observational trial launched by Dr. Vartanian and K. Rashid Rumah, who works both with Dr. Vartanian and with co-author Dr. Vincent Fischetti at The Rockefeller University.

RESEARCH: Toxin-emitting bacteria being evaluated as a potential multiple sclerosis trigger

Source: Health News Digest (26/10/2013)

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research Information: continued

C. perfringens type B or D, so it does not grow well there. It hibernates in a protective spore. When it does grow, we anticipate it generates a small quantity of epsilon toxin, which travels through the blood into the brain," Dr. Vartanian says. "We believe the bacterium's growth is episodic, meaning the environmental trigger is always present, and it rears its ugly head from time to time."

He says researchers do not know how humans are infected with C. perfringens type B or D, but they are studying potential routes of exposure. The scientists are also in the first stages of investigating potential treatments against the pathogen.

"There are a variety of approaches we can take. A vaccine for humans is possible -- there is already a vaccine available for farm animals, but it requires repeat immunizations," say Vartanian and Rumah. "We are also investigating the possibility of developing small-molecule drugs that prevent the toxin from binding to its receptor.

"But one of my favorite approaches is development of a probiotic cocktail that delivers bacteria that compete with, and destroy, C. perfringens types B and D," Vartanian says. "It would be such a beautiful and natural way to treat the gastrointestinal system and solve the problem. We are also starting to work on this approach."

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RESEARCH: Worldwide Increase in MS

Author: MS Trust - 04 October 2013

There are now 2.3 million people with MS around the world according to a report that accompanies the new edition of the Atlas of MS published by the Multiple Sclerosis International Federation (MSIF). This figure is an increase of 10% from the previous edition of the Atlas published in 2008.

The new edition found that there are twice as many women as men with MS and the average age of onset is 30, both similar to the figure from five years ago.

The Atlas, which includes information from 104 countries, looks at a range of issues including access to specialist health professionals and treatments, symptoms and quality of life issues.

A separate study suggesting an increase in the number of people with MS in the UK was published last week.

RESEARCH: Functional change in brain as cause of cognitive disorders

Source: Health Canal (14/10/2013)

Over the course of the disease, multiple sclerosis is very often combined with a deteriorating memory and attention deficits. Researchers at the University Department of Radiology and Nuclear Medicine at the MedUni Vienna have now demonstrated by means of a meta-analysis of functional image data that increased activations in

the involuntary attention system in the brain are responsible for these disorders in MS patients.

MS patients generally often have problems with fading out what is unimportant. Says head of the study Veronika Schöpf: "They are practically in continuous alarm mode." The attention system is too highly activated and also notices – for example when watching the television or when talking to someone – completely unimportant extraneous noises. Because of this, concentrating on what is important is completely impossible or only possible to a limited extent. In addition, MS patients find it difficult to look for one specific thing and also find it. This high activation thus also leads to a poor memory and at the same time adversely affects the ability to take in new things.

In a meta-analysis in the top journal Neuroscience & Biobehavioral Reviews (Impact Factor 9.44) it has now been possible to prove that functional changes in the brain are responsible for these disorders and that these can also be depicted by means of functional imaging.

"In most people the centre for these activities lies in the right half of the brain, in many MS patients however it lies in the left side of the brain, as it does in many epilepsy patients," says the PhD student and primary author Kathrin Kollndorfer. This knowledge could now feed into the development of personalised treatments for people with multiple sclerosis in order to counteract these cognitive disorders in good time.

With this, the working group at the MedUni Vienna has also achieved a better generalisability of the research


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RESEARCH: Parkinson’s disease medication shows promise for myelin repair

Source: Multiple Sclerosis Research Australia (27/10/2013)

Researchers from the Scripps Institute in California USA, have discovered that a drug already in use for Parkinson’s disease may provide a means to stimulate repair of myelin in MS. Their findings have been published in the top medical research journal Nature.

In MS, symptoms are caused by an immune attack on the myelin sheath that insulates nerves in the brain and spinal cord. This damage can be repaired when new myelin producing cells, oligodendrocyte precursor cells, move into the site of injury, mature and wrap new myelin around the nerve axons. However, previous research has shown that while oligodendrocyte precursors freely move into MS lesions, the final step of remyelination is frequently inhibited for unknown reasons, leading to progression of disability.

In an effort to identify potential new medications that can overcome this barrier to repair, the US researchers performed a major, automated experiment, known as high-throughput screening, to test thousands of chemicals for their ability to stimulate oligodendrocytes to mature and produce myelin.

Among several potentially interesting molecules detected, the screen identified a molecule called benztropine, which is already in use to treat psychosis and tremor in patients with Parkinson’s disease. Since it has been already tested for safety in patients and is known to pass through the blood-brain-barrier into the brain tissue, it made a very attractive target for further investigation.

In a series of experiments, the researchers showed that benztropine can stimulate rat and mouse oligodendrocyte precursor cells to mature into myelin producing oligodendrocytes in the laboratory dish and can enhance myelin repair in two mouse models of MS-like disease.

In two mouse models of MS-like disease, which use different strategies to damage myelin, the drug was able to significantly reduce the severity of neurological symptoms. Using microscopy to look inside the brains of the mice, they showed that the drug did not block the influx of immune cells into the brain, but it did lead to much higher levels of remyelination.

The research team then used the oral immune-modifying MS medication, fingolimod, in combination with benztropine in mice with MS-like disease, since fingolimod is able to block the influx of immune cells. When used with benztropine, much lower doses of fingolimod were needed to achieve the same clinical effect in reducing neurological symptoms. If this can be replicated in people with MS, it would have significant benefits in reducing the side-effects of immune-modifying treatments whilst also promoting repair.

This research is a very interesting development in the hunt for much needed medications for repair and regeneration in MS. However, as the authors state, successful translation of these findings to people with MS is several years away and will require further laboratory testing before clinical trials could commence.

research Information: continued

Your Committee needs help!On the face of it the Society’s membership is getting a very good, if not excellent, service.

We have a top notch team of Field Workers giving us coverage throughout the region. We have just had our most successful Ball ever, excellent sponsorship, a good turnout with all available tickets sold and a healthy profit. Our finances are stronger than they have been for many years thanks to our Funding Administrator and the Committee. A regular high quality newsletter which is sent to all members.

However, all of this is achieved through a volunteer group of only four people. The only things they have in common are an intimate connection to MS and a desire to help people with MS. The Committee are focussed and committed but there is only so much four people can do. This means that we are stretched and very vulnerable.

We have tried at the AGM, through the newsletter and personal contacts to find/identify additional help. All to no avail. Just one new committee member would be great and make a real difference.

No qualifications are needed except common sense, a can do attitude and a motivation to helping people with MS. Meetings are held monthly and usually take up to 2.5 hours. If you are interested please ring Hamish on 974-5530 email [email protected], or just come along to one of our Committee meetings to see who we are and what we do.


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Book Review: Finding peace and happiness

It is with great pleasure that I am taking up an opportunity to spread the positive word about a book I have recently published and which I believe could be of great enjoyment and benefit to people of all ages, including and those with MS.

Entitled My Happy Place, the book is a collection of the happiest thoughts and memories of 54 New Zealanders - some well known, such as actor Sam Neill, musicians Ladi6 and Boh Runga, authors Maurice Gee and Joy Cowley, and others less well known but equally inspiring – with all “thoughts” then illustrated by students at partner schools of the charity KidsCan. This outstanding charity supports Kiwi kids living in poverty through initiatives such as providing meals in schools, clothing, shoes and basic hygiene items.

Acclaimed author Witi Ihimaera wrote a foreword for My Happy Place and award winning designer Vasanti Unka brought everything together on the page.

What I love about this book (and I feel I can love it outright because of the positivity and generosity offered by all those who contributed, from adults through to students) is how it makes me, and others who read it, feel. As Shortland Street actress Amanda Billing wrote about My Happy Place: “I like the way this book makes me feel: contemplative, peaceful, human.”

As someone with MS (I was diagnosed back in early 2002), I know how important it is to find time to reflect on positive and happy thoughts, to focus on ‘mindfulness’ and to allow ones self to relax, both physically and mentally. And this book really helps me to do just that.

I often read over the contribution from veteran Royal New Zealand Ballet dancer, Sir Jon Trimmer, who wrote about a technique he uses to make himself feel “happy and bright”, or the way musician Ladi6 imagines herself “walking on a very sunny day in warm glowing light down a long dusty road lined with rows and rows of blooming sunflowers” to find moments of peace.

I also love some of the precious memories shared in the book, such as artist Dick Frizzell recalling a childhood Christmas holiday in Hawkes Bay, or Maudie Wilson, who is believed to be New Zealand’s oldest person at now 110 years old, recounting family walks in the hills of Central Otago. All of these contributions, brought to life through the

creative artistry of children throughout the country, combine to make me happy every time I re-read My Happy Place.

While I cannot promise that my appreciation of My Happy Place is unbiased, I would encourage everyone with MS to take a look through the book if you have a chance. It is available at many libraries and for sale at selected bookstores throughout New Zealand or online at http://www.smallfish.co.nz/shops/my-happy-place. And it would also make the perfect Christmas gift for friends and family of all ages.

I also feel it is important to thank Wellington MS Society Field Worker Charlotte Hathaway, firstly for being so good at her job and offering me security through her support, and secondly for being so enthused about My Happy Place. Thanks Charlotte!

Take care everyone and wishing you great happiness,

Melissa Mebus

generalinformation:


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Book Review: Decision Time : a guide to choosing an aged care facility in New Zealand

(By Jenny Moloney and Heather Johnston) ISBN : 978 0 9922603 0 9

The choice of an aged care facility may be one of the biggest decisions you, your relatives or your carers may make and this recently published book gives you all the tools you need to make an informed decision.

It is written by two highly experienced Registered Nurses who have specialised in aged care. They have nursed both in New Zealand and the United Kingdom.

This well written and easy to read book is extremely practical and follows a logical sequence from your first visit through to issues such as staffing levels, care standards and

abuse. The detailed checklist of what to look for in an aged care facility is excellent with suggestions such as “if the smell is an issue, don’t waste your time-you don’t need any further information about this facility-leave immediately”

The authors hope that the information provided will assist in safeguarding you (or your relative’s) future wellbeing and quality of life.

An excellent book and highly recommended.

To purchase go to http://decisiontime-thebook.com/Price $28 + 3.50 Postage (NZ)= Many thanks to Celia Bockett for reviewing this book.

Insurance Advice: AdviceFirst

generalinformation: continued

We know that MS can cause a wide variety of symptoms that differ from person to person, making it difficult to understand how this may impact your ability to get insurance.

Alongside our primary sponsorship of the recent Wellington Spring Fling Charity Ball, AdviceFirst is committed to supporting the Wellington MS Society through our ability to provide expert advice on health and life insurance.

At AdviceFirst we know there’s no ‘one size fits all’ solution when it comes to finding a suitable insurance package that protects you, and the things that matter most in your life. That’s why we take the time to get to know our clients, learning their needs and exploring the different options for a solution that best suits their lifestyle.

We provide advice on a range of covers, including but not limited to - Life, Trauma and Health Insurance, Income Protection and Disability Cover. And if you’re in business, we also offer a range of business insurance and support solutions.

If you’d like to find out more about our service, or to discuss your personal requirements, please contact Director Peter Chote on (04) 495 2287 or [email protected]

Alternatively, you can visit the AdviceFirst website www.advicefirst.co.nz for more information.

A copy of Peter’s disclosure statement is available on request and free of charge.


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Wellington Multiple Sclerosis Society Spring/Summer 2013 Newsletter

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