MS Voice Sept 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 Page 10

Yoga & MS Page 26

Understanding thebrain-body dialogue

Page 20

Issue 34 June 2011

voiceIssue 35 Sept 2011

Dine@Mates Rates Culinary kings complete their dining experiences to raise funds for the MS Society Regional Voice page 6

Electioneering With elections closing in it is important to question politicians about the issues that matter Feature page 32

Outward Bound “Outward Bound to me, was an opportunity to really let go and enjoy life as it was.” Feature page 15

Relationships at home, work and in our communities

We care campaign Page 16

Care giverRelationship Page 20

MS Voice Issue 35 Sept 2011

Contents

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

Regional Voices Latest local news and events

Research A selection of recent research into emerging treatments and

therapies

Work life baance Charlotte Hinksman how we can balance life and work.

Outward Bound A new fundraising project coming soon

We Care TJoin the campaign to improve the rights of care givers in New Zealand

Carer relationship It is important that carers take care too

Parenting & MS Becoming a parent is difficult and MS brings with it unique challenges

Electioneering With the election nearing we need to put pressure on MP’s to consider the issues that matter to us.

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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.

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Research NewsLatest research into

treatments and therapies

Care givers Understanding the needs of care

givers

Parenting & MS Guide to parenting: Managing

the challenges of MS

Features

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32

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

This year is election year and it is so important that our voices are heard. Inside this issue of the Voice, you will find a list of questions we feel are pertinent to those with MS and their carers/families – please feel free to use them, and/or add your own issues and take them down to discuss with your local candidates. You can find out who’s who in your local electorate online at www.parliament.nz or, call National Office on 0800 MS LINE (0800 67 5463) and we’ll be happy to help.

“Dine @ Mate’s Rates” was a great success and I am happy to be able to announce the winners on page XX . Congratulations and enjoy your wonderful prizes from our generous sponsors, Kitchen Things. Spot prizes have also been finding their way out across the country since

August. Enjoy and thank you for participating in our inaugural event, we hope you will continue to

support us through “Dine @ Mate’s Rates” next year.

Our next fundraiser, the “MS Wine Auction” has had a fabulous response from many generous vineyards from all over the country and I look forward to being able to bring you more on this event in the December issue.

So, with Spring around the corner, take care and don’t forget to make yourself heard come

November’s election. Your future, your issues, your voice.

‘Til next time...

Rosie

Crock’s Chronicles

I recently went to the wedding of one of my former students. At the reception I was seated at the head of a table of strangers. Two men were on my left and a sixty-something man on my right; always a nice ratio to begin an evening. While the men on my left and I were busy discussing global warming, (as you do) I was aware the man on my right was studying me. As we hadn’t yet spoken I was surprised when he interrupted me mid-sentence. His gruff tone made it sound like an accusation.

“What’s wrong with you?”

Was it my perception or did the other chatter around the table suddenly diminish in volume? Despite my natural instinct to answer a question regardless of whether the answer is on a needs-to-know basis or I’d need to kill them afterwards, (I’d have made a terrible spy,) this time I resisted the temptation. “Nothing,” I replied. He could at least have begun

with: “Do you mind me asking….?” I turned back to solving the world’s problems, hoping Mr Retirement-age would understand. He did not.

“Yes, there is, you’re in a wheelchair.”

I looked back to the weathered face demanding an answer. “No, there’s nothing wrong with me, but I do have MS.”

“That’s a bugger!”

I smiled, forgiving him his earlier blunder. “I’m okay, I’m fine the way I am.”

His expression showed complete confusion at this, clearly having me pegged as a complete nutter. I left him to his assumptions.

Our choices around language, fascinates me. His use of the words ‘wrong with you’ is a prime example of what has been an acceptable expression in the past, but now implies negativity. Of course what’s wrong with me may be that I’m plain argumentative, but it’s the why things

change that’s intriguing. Do we get tired of hearing the same old words used, and with the arrogance of new generations assume we can do better? Or, like everything subject to the process of change, is there some other subtle shift in cultural acceptance that hastens the words’ used-by date?

I use the term cripple for a reason. The shock response engendered from many allows me to explain that I dislike the word disabled, beginning as it does with the prefix dis meaning lack of. Would any non-disabled person choose to be defined by what they can’t do?! “Hello, I’m John, I’m hopeless at intimacy.” I can’t see that happening this side of the next millennium. Using differently-abled might be more accurate but aren’t we all? Even John with his intimacy issues can relate to that so I’ll pass on that one too if you don’t mind. But nothing changes if we are afraid to challenge established practices. Some just take a while to catch on.

What’s in a word?by Melanie Trevethick

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 Sept 2011 Page 5Page 4 ms. voice Sept 2011

MS West Coast

Celebrating the opening of their new office

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.

Pauline Peterson.

Orange MS RibbonsThese hand spun glass orange ribbons are available from National Office for just $22.50, inc. P&P.

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!

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

Family Camp at the Totara Ms Waikato held its Family Camp at the Totara Springs Christian Camp in Matamata on April 8 – 10

63 people attended which included – People with MS, Family members and children, we also had 2 staff and 1 day volunteer

The weekend consisted of Top Town Challenge, kayaking, shooting, rock climbing, archery, crate climb, bmx, go karts, hydro slide and the list goes on

A wonderful weekend was had by all children and adults alike all participating in the activities regardless of ability.

The noise of laughter could be heard throughout the camp and the beaming smiles brightened up the day.

The Totara Springs Camp Staff were very accommodating, the lodgings were brilliant, we came away totally exhausted but looking forward to the next camp.

Dine @ Mate’s Rates for MS was held for the first time this year and proved to be a fun event that all participants really enjoyed being a part of.

We had entries from all over New Zealand and it was a close finish for the winners of the top fundraising prizes provided by Kitchen Things. Top fundraiser was Jennifer Venimore from Auckland who won a $10,000 shopping spree at Kitchen Things, second was Helen Benard from Palmerston North who won a $3,500 shopping spree and third was Peter Tutty from Auckland

who won a $1,500 shopping spree from our wonderful sponsors Kitchen Things.Special mention must be made to Brenda McCreedy from Whangarei who finished a very close fourth and she won a Staub cast iron 31 cm Cocotte & 2x 10cm mini Cocottes donated by Kirkaldie & Stains, worth an impressive $649!

thank you to all our sponsors and everyone who participated and we hope to make Dine @ Mate’s rates for MS bigger and better in 2012.

Dine @ Mates Rates for MS !!

Regional Voice Local News & Events


Advoacy in action

MS Society funds major international stem cell research

Scientists in the UK have received £1 million funding for three new studies which will test whether stem cells can be safely used to slow, stop or reverse the damage caused to the brain and spinal cord in people with MS.

Dr Paolo Muraro and his researchers at trial sites in Edinburgh and London will take stem cells from the bone marrow of 13 people with MS, grow them in the laboratory and then re-inject them into the bloodstream. The stem cells will make their way to the brain where it’s hoped they will repair the damage caused by MS – including targeting ‘active’ lesions, where damage is currently happening.

Scientists believe that this unique international collaboration will reduce, by a number of years, the time taken to test whether stem cells could be a safe and effective treatment for people with MS.

cells could not develop into oligodendrocytes.

The researchers needed to find a way of ensuring Axin 2 was present within these stem cells. They did this by using a molecule called XAV939 to stabilise the protein during tests in the lab.

This was effective at ensuring the stem cells were able to convert into oligodendrocytes, offering hope that the molecule could lead to the development of a drug that replicates the effect in clinical trials.

Dr Steve Fancy, lead author of the study said: “This work identifies Axin 2 as a molecule which seems to be important in myelin repair. Our hope is that we’ll be able to use this knowledge to develop treatments that repair damage caused by MS.”

Moving towards a more effective treatment

The study was led by Dr David Rowitch of the UCSF Eli and Edyth Broad Centre for Stem Cell Research and Regenerative Medicine and Howard Hughes Medical

Researchers part-funded at the University of California San Francisco and the University of Cambridge have made a discovery that has the potential to lead to a drug treatment to repair damage caused by multiple sclerosis.

They discovered a molecule that is capable of stimulating the body’s own stem cells to repair myelin. There are currently no treatments that can repair the damage caused by MS.

Researchers hope that this, as well as other discoveries, will lead to a treatment for people with MS within the next 10-15 years.

What did the study show?

The study focused on a specific set of stem cells in the brain that can turn into oligodendrocytes - which in turn go on to make myelin. The researchers found that when a protein called Axin 2 was present in the stem cells, they were able to convert into oligodendrocytes.

But this protein can degrade within cells and is therefore not always present - and when missing, the stem

Researchers discover new approach that may repair MS damageNature Neuroscience (June 2011)

Research News

Researchers based at the Institute of Neurology published results of a phase II clinical trial in the journal Lancet Neurology this week.

The trial involved 120 people with secondary progressive MS who took a tablet of lamotrigine or a placebo treatment for up to two years. Researchers measured effects on brain volume, disability accumulation and numbers and size of lesions as well as safety of the treatment.

Lamotrigine was associated with complex brain volume changes over the course of the trial and the reasons for these changes remain unclear. Surprisingly, lamotrigine caused shrinkage in brain volume over the course of a year but this stopped after a year of treatment and brain volume had rebounded by the end of the trial.

Lamotrigine also appeared to cause a temporary worsening of symptoms in some trial participants which was overcome by

lowering the dose of the drug. This phenomenon has not been seen in previous trials of lamotrigine in MS and may be due the fact that participants in this trial had higher levels of disability at the start of the study than participants in previous trials.

Despite these seemingly negative results, lamotrigine did appear to have a positive effect on walking. It cut the deterioration in walking by half in people taking the drug. Trial organisers concluded that longer-term clinical trials may help to evaluate the safety and effectiveness of lamotrigine in people with secondary progressive MS.

Trial organisers remained positive about the outcomes of the trial. Dr Raj Kapoor, the trial’s leading researcher said, “Our study on lamotrigine has appraised its value as a therapy in secondary progressive MS and has paved the way for further trials to evaluate the use of similar drugs in MS.”

Phase II clinical trial for lamotrigine

Research News Research News

Institute.

Today’s results follow ground-breaking research published last year from the Cambridge Centre for Myelin Repair and the Edinburgh Centre for Translational Research, which showed that targeting a different molecule promoted myelin repair in laboratory models of MS.

This second discovery increases the likelihood that researchers will be able to tranlsate their findings into treatments that repair myelin in people with MS.

Robin Franklin, Professor of Neuroscience at the University of Cambridge, who was co-author of the study said: “There are currently no treatments that repair myelin caused by MS, which is a missling link in the treatment of the condition. This discovery means we now have even more credible opportunities to promote myelin repair, which is a really promising step forward. Our efforts will now be focused on translating these findings into treatments for people with MS.”


Neuro-linguistic programming (NLP) is a therapy which uses the brain’s natural processes to make changes in the way we think, feel and behave. This article will look at how to be living your life in a continuously balanced way to get the maximum health and wellbeing benefits.

Having had the benefit of contrast recently (i.e. being significantly out of balance and then putting myself back in it again) I can answer this question wisely:

You feel physically well, or as well as you can feel, you feel rested when you rise in the morning, you have time for things - yes, time - for activities and people you really enjoy.

Your lifestyle allows you to take regular exercise that

works for you, and on what you eat and how you eat it.

You feel alert and energised when you

are going about your daily “work” - referring to anything from paid employment, voluntary employment and/or looking after your home and family.

Affairs are organised and up to date and you have a sense of being able to manage what is required of you and what you are committed to.

You are comfortable at the pace your life is

moving forward.

When you are at rest, relaxation and play, you

are 100% focussed on this, switched off from your work. When you are going about your work, you are 100% focussed on this. You are therefore happy at work and happy at rest.

You have surplus energy available for what

is required and what you choose to do in your life and a feeling of wellbeing.

How idyllic does this sound? How reachable and achievable does it feel from where you are at the moment? Does it seem unachievable and unreachable? This will give you some idea where you are at right now. Speaking from careful personal and professional experimentation, observation and consultation over the last

five years, I can safely say it is absolutely possible for anyone to get themselves there: it simply takes awareness and continuous adjusting based on you knowing yourself well and it is easier than you think. It involves paying very close attention to what is going on in your life, how you feel - physically, mentally and emotionally - and the ability to make adjustments at any given moment to put yourself back into a balance: a feeling that is now defined and familiar. People are operating under the illusion that “work-life

balance” is destination or a goal that you will reach one day - this is a misunderstanding. When you jump on a bike and start peddling, you are achieving balance, the ability to keep yourself upright and moving forward. If you stop peddling you end up wobbling and landing in a ditch somewhere! It becomes balancING therefore: continuous paying attention to where you are and adjusting yourself to stay balanced. Sometimes you cruise downhill, and sometimes

it takes effort to get uphill, yet your feet stay on the peddles. Working-living-balancing is a therefore a continuous process - not a destination - it is something you are doing, through awareness and adjusting, now, and for the rest of your life.

The answer to this question is something I would like YOU to get better at answering for yourself - as doing this balancing business

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

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

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

Once the life-threatening

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

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

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

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

ms. voice June 2011 Page 11

How to be

successfully

working-living-balancingby charlotte Hinksman

How do you know when

you are in balance?

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How do you know when you

are not in balance?


successfully is going to take self-awareness. Some generalisations of signs and symptoms can include:

• If you are a woman - hairy legs (this is the answer I get most often in workshops when I ask this question!) - a sign of neglecting those things which make you feel good, or neglecting the simple things because you simply “don’t have time”

• Feeling overcommitted or overloaded by the tasks required of you and therefore unable to meet these commitments or meeting them under a considerable amount of stress

Physical and emotional symptoms of stress and / or fear and anxiety (see previous article on the mind-body connection). Includes losing sleep, poor digestion, mind busy with invasive thoughts, unable to relax properly, illness and/or physical symptoms showing

up in the body

To do list too long and unable to complete the essential things

Feeling overwhelmed and feeling like you simply “don’t have time” or “how am I ever going to get this done?”

A feeling of hastiness in the chest, or rushing when going about tasks - just wanting to get on to the next thing...

Serving everyone else, with little or no downtime for yourself - leading to resentment of others

Not making enough time to pay attention to your diet and not making enough time to do the exercise you know works for you

You never get to do the things that you want to do, the things you enjoy

Not focussed in the present moment - when you are resting you are thinking of work, or when you are working you are longing for rest or play

Going about your daily tasks but feeling unfulfilled or dissatisfied, as if something is missingIf these signs continue

long-term you are at risk of burn out and the long term physical and mental effects of prolonged stress - both of which are major and can cause serious issues.

When we are overloaded or there is “not enough time in the day”, or we are stressed and therefore tired, we neglect those good balancing behaviours that make us feel good; like shaving, taking a walk, spending time with our animals, exercising, eating the things that are right for our body. We instead get into short-term stress relief patterns like watching TV, eating bad food, drinking more alcohol, smoking more cigarettes. Short term of course, this might be fine i.e. you get a big project out of the way and then you put things back to balance once time returns to you. However, sometimes these short-term stress relief habits become difficult to change and therefore problematic in themselves.

Many work places are still operating under the illusion that stress and working under continued pressure is good motivation for people

- and it can be - if only short-term. The problem is that once one big deadline is out of the way, the next one comes along and we continue on this pattern of short-term stress relief. It is well documented by research now that when people are well rested, relaxed, balanced and happy they perform significantly better at work. This is our aim.

Then, of course, the excuses we have found for not giving ourselves permission to do those things that feel good:

We feel guilty if we are doing something for ourselves (“I can’t go for a walk when I should be doing the washing...”)

We put others before ourselves (“If I don’t call Anne, she will be annoyed”)

Unable to say no to people - usually because of fear they will be upset with us or dislike us

Making decisions about how we spend our time that consider other’s needs above our own

Not taking responsibility for taking adequate breaks during and after work

Believing that you just “don’t have time”Thus the vicious cycle continues.

This is about YOU getting to know YOU. You must create awareness about:

What are your earliest signs that you are out of balance? What are you main stressors or triggers for stress in your life? What are your personal dysfunctional patterns - do you find it hard to say no? Do you over-commit, take on more than you are capable of? Are you good at ignoring what your body is telling you?

Do you know the stuff that balances you out and makes you feel better, or even better, the stuff that makes you feel great? Are you an Active Relaxer (you need to be doing an activity in order to relax, like knitting, playing chess, gardening or exercising)? Or are you a Passive Relaxer (you need to be doing nothing in order to relax, lying down, watching a movie, having a bath)? What, or who, drains your energy and what gives you energy?

Exercises that work for working-living-balancing:

1) Buy an A3 pad of paper, or a big notebook, you will need one.

2) Catch your earliest warning signs: write a list of how you know you are stressed or out of balance (this is different for everyone). It is good to do this when you are actually in the moment - so you are aware and can notice your earliest warning signs. Mine are a feeling of hastiness in the chest and finding it hard to relax my thoughts before bed. As soon as I get the slightest hint of either one of those signs I jump on it like a dog with a bone and am on to the next exercise.....

3) Your Energy BucketWrite down all the things you can do

What stops us from paying

attention and adjusting

appropriately?

What can you start doing,

instead, now and in any

given moment?

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ms. voice Sept 2011 Page 13

that you know energise you or replace your energy. For example: 8 hours sleep, yoga, planting the garden, salsa dancing, time with my grandchildren, reading, good conversations with friends...and so on. Write each one with a big arrow going IN to your Energy Bucket.

Write down all the things that you know drain your energy. For example: not disconnecting from work, not taking breaks, draining conversations, working long hours, too little sleep, school meetings, washing...and so on. Write each one down the bottom of the bucket as a HOLE in your bucket, with

an arrow coming OUT for your Energy Bucket.Now that you can see it all, what are the HOLES you can PLUG UP? You don’t have to plug them up forever, they can be short-term plugs! And some of them you may “semi-plug” - i.e. do less of. And how can you do MORE of what needs putting in? This will help decide what you put your time into and what needs adjusting at that given moment in time. You will come here again and again as you continuously adjust in response to your awareness to be balancing your life.

I am still working out my spiritual beliefs - and, there

is one thing I am certain of - you are not on this planet to “get it all done” at the cost of your health and wellbeing. Remember, your life doesn’t exist without YOU, so look out for you, you are important.

Charlotte Hinksman is a certified master practitioner and life coach of NLP. She has a private practice in central Wellington and also conducts sessions over SKYPE. More information can be found at:www.charlottehinksman.com, chinksman.blogspot.com or at www.nzanlp.org.nz.

About Charlotte

I would like to use this opportunity to thank the NZ MS society for my financial support enabling me to attend an Outward Bound course.

At Outward Bound you do so much in one day. You wake up, do PT (physical training), run 3.2km and have breakfast all before 7.30am, the time I usually wake up. We then getourselves ready for whatever we have been told that we are going to do that day. One day, near the start of the course, we were told to get into PT gear and meet our instructorsnear the beach. We then proceeded to run onto the muddiest part of the beach they could find and lay down and rolled around,

making sure we were completely covered in mudthe instructors then spoke of how the mud that was on us was the mask that we wore at home and when we jump off the wharf we would be washing away that mask and be ready to embrace the full effects of Outward Bound.

This is a classic example of Outward Bound’s teaching style. There is always a reason behind an activity and behind thatreason is a metaphor.

Outward Bound to me, was an opportunity to really let go and enjoy life as it was. I was able to really appreciate the environment around me and how fortunate I am to live in such a beautiful place. Through

Outward Bound’s teaching technique’s I learnt howrewarding service to others can feel and how easy it is to make small changes in your lifestyle to become environmentally friendly.

I have come away from this fantastic experience feeling richer for meeting such a variety of people and a greater understanding of how important it is in life to be able to get onwith others and together we are stronger than being on your own.

Once again I want to thank you for this fantastic life experience and I feel very privileged to of been selected to attend this Outward Bound course with your financial support.

Outward BOund by Genevieve Saunders

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The We Care! national aareness campaign, supported by more than 40 national not for profits, is asking the Prime Minister, John Key, to lead a new era of positive change for New Zealand’s 420,000+ carers of ill, elderly, and disabled friends and family members. Carers NZ, the national peak body for carers, and the NZ Carers Alliance have organised the campaign to unify the large but often invisible community of carers, and give them a direct voice to the Prime Minister, government, and wider society. The organisations are

concerned that the Carers’ Strategy, launched in 2008 with a five year Action Plan, has lost momentum within government agencies in the wake of budget constraints, restructurings, and health spending that is focused on facilities rather than community supports. Community based care is unsustainable without first ‘caring for the carers’.

“We have an ageing population that is living at home for longer with higher support needs than past generations,” says John Forman, Chair of the NZ Carers Alliance. “This is happening at a time of other big social

shifts, particularly the need for carers to work in paid employment to keep their families afloat.”

Carers are New Zealand’s biggest health workforce and their unpaid work has an annual economic value of more than $7 billion. Caring is something we can all expect to give or receive during our lives. Caring can be for a short time or for a lifetime. Any of us can become a carer overnight (after an accident or health trauma) or over time, as a loved one’s needs increase. Caring is an unsung role, something Kiwis have always provided for family/whanau and friends, but

More than 420,000 New Zealanders care for ill, frail, injured or disabled family members and friends.

carers are New Zealand’s biggest health workforce, and their unpaid work has an annual value of more than $7 billion. We will all give or need family care during our lives. Despite their important role in family life and society, carers don’t always receive the support they need.

carers don’t always get the recognition and help they deserve. Mr Forman says the caring role has priceless social and family value, and significant economic value that can no longer be taken for granted.

“We have to do better for carers. they give a lot and they deserve more. it’s as simple as that. ”Although 90% of carers

are of workforce age, and a majority work full or part-time in addition to their

caring duties, inadequate support for carers is forcing many out of their paid jobs. A study by Auckland University last year found that of 300 carers interviewed, only eight have been able to continue in paid employment, a trend that is not sustainable for families or the national economy.

Add your voice to ours to call for genuine support and good decision-making for carers! To learn about and participate in the We Care! campaign visit:

www.wecare.org.nz Facebook: We Care NZ Twitter: #wecarenz

Messages

“Don’t you think it is ridiculous that I have to leave my home and go and do a “babysitting” job for a friends child to earn money to support my family while I have someone else coming into my home to look after my disabled daughter. She deserves the best care and the best care is what we can give her at home.” Leesa Ross 21 Jul 2011

“We are among the most undervalued, underpaid, over worked over stressed people in the workforce. I challenge you to come do my job for one week.” Jenny 11 Jul 2011

“It seems to me to be contrary to natural justice that carers who are related to their charges should be treated differently to any other carers. “Kate Mahoney 07 Jun 2011

“My wife and I sold our house to build/move in to look after my mother. We don’t qualify for any help yet my wife gave up her full time job to do it. Not fair - give us some help. “ John Kitson 25 Jul 2011

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For many of us, taking on the identity of ‘carer’ is by no means natural or even welcome. We are first and foremost husbands, wives, sons, daughters and so on. We do what any of us would do, providing care and support to someone close to us. It is when caring responsibilities begin to have too great an impact on our lives that taking on this ‘label’ can prove useful, as it is often the first step to getting the support that we may need.

We use the term ‘carer’ to refer to anyone who looks after or supports someone else who needs help with their day-to-day life, in this case because of their multiple sclerosis (MS). While this is most often a partner or spouse, the primary care giver may also be an adult child, parent, or friend. Whoever you are, remember that paying

attention to your own health and well-being is essential to being able to care for someone else.

Being a carer can mean many things, from simply supporting and keeping a check on someone, to carrying out a complex range of tasks, sometimes day and night. With MS, someone’s caring role can change from one day to the next, with many varied and complex symptoms influencing the support they need.

THE IMPACT

Many family members and friends willingly provide significant care and support over the course of many years after someone they care about is diagnosed with MS. This can be a positive and rewarding

experience for both the caregiver and the person with MS. Relationships may be strengthened as family and friends can be drawn closer together to face the daily challenges of living with MS.

But being a care giver can also be very demanding and challenging work that significantly affects a caregiver’s life and health and the very person you turned to in the past for support and guidance could be the person you are now caring for.

While many family members welcome and adjust very well to the caring role, the responsibility produces some level of physical stress and emotional strain. The physical stress can result from the activities of caring, including helping with transfers or the fatigue that comes from lack of sleep.

The emotional strain often begins with the sorrow that the carer experiences at the changing relationship with the person with MS and their grief at the constant losses in physical

and cognitive ability their loved one experiences as MS progresses. Many carers believe that it is much easier to deal with the physical changes than it is with the cognitive losses that “take away” the person they love. Other sources of emotional strain are the multiple responsibilities that the carer must manage and the social isolation that results from these many demands.

Caregivers may also become isolated as they have less time to devote to friendships

Care giver Relationship

Ten Tips for Family Caregivers

1. Choose to take charge of your life, and don’t let your loved one’s illness or disability always take center stage.

2. Remember to be good to yourself. Love, honor and value yourself. You’re doing a very hard job and you deserve some quality time, just for you.

3. Watch out for signs of depression or stress, and don’t delay in getting professional help when you need it.

4. When people offer to help, accept the offer and suggest specific things that they can do.


and leisure activities. At times, the demands may seem overwhelming as caregivers juggle many caregiving and household tasks, often along with parenting and employment responsibilities. Given these realities, it is not surprising that caregivers frequently report that their caregiving role has had a negative effect on their own health and quality of life. Without support and opportunities to re-energise, a caregiver’s physical and mental health can suffer. Withotu the correct support a caregiver’s health may worsen to the point that he or she can no longer care for their friend or family member

CARERs TAkE CARE

If you are a family caregiver, you know that much of your energy is focused on meeting the needs of the person you are caring for, and that focusing on your own needs may seem selfish. But preserving your health, getting a break, having time for yourself, none of these are selfish desires.

MS is a disease that lasts a lifetime. The need for care seldom, if ever, is reduced over time. In order for family members to continue their

caring it is essential that they take care of themselves just as well as they care for the person with MS. This includes open and honest communication with all of the family about the care-giving situation and the need for help if that arises.

Maintaining one’s own physical and emotional health is a key to sustaining positive caring. Carers should know when to ask for help, make sure that they have ways of keeping themselves refreshed and take advantage of the services offered through their local chapters of the MS Society, such as peer support groups or respite services.

LETs TALk

Sometimes care givers can feel guilty about negative feelings they might have about handling this often difficult situation. This can lead to hiding away your feelings and hope they will go away. As a result, caring can feel like quite a solitary existence. But do remember that you are not alone, there are a great many carers in similar circumstances, feeling similar emotions to you.

It is important as a family

care giver to be able to talk openly with the person with MS. This could involve the ability to have potentially difficult conversations, about the practical aspects of dealing with the MS as well and the emotional consequences both family members experience.

In some circumstances it may be necessary to talk to a professional who can assist with developing good communication techniques, such as identifying the best time to have potentially difficult conversations, not blaming the other person for one’s own feelings and the most positive way to frame what needs to be said. Some times these professionals are helpful in facilitating especially difficult conversations, for example about the need for outside, paid help, the need for adult day care or the possibility of a nursing home.

It is also important that caregivers ask for help when they need it instead of trying to do everything themselves. While may be difficult to admit that you can’t do everything alone, you may discover that friends and family are not only willing, but even eager to help. Sit down with family members or friends

in person or find a quiet time to talk to them on the phone and discuss specific areas in which you think they could help.

WoRk & CARIng

Most family care givers have many responsibilities in addition to the help they provide to their family member. One of the biggest conflicts that carers face is the need to work. This is essential to meet the needs of their family and to pay for all the MS-related expenses.

Because of this need to work for pay, many carers find themselves managing two full-time jobs, their paid employment and the caring, with too little time for being with other family members, seeing friends or participating in church, social or political activities. This leaves them with too many responsibilities and no chance of doing any of them well.

Trying to balance work and caring can be stressful, particularly if your caring responsibilities are unpredictable from one week to the next, as is so often the case with MS.

Sometimes, when caring

responsibilities increase too much, it is not possible to maintain existing work arrangements. In such cases it is important to talk to your employer about your home commitments and if necessary make changes to your work. It is in your employer’s best interest to explore how changes to your work arrangements can help you continue work and caring. Depending on the type of work you do some changes to consider might be working from home, flexible hours, reducing the number of days you work or job-sharing.

AVoID BURnoUT

Being a care giver can bring great emotional and physical demands which mean that carers can often feel that they have no time for themselves. Care givers can often feel drained and frustrated because of the many physical and emotional demands placed upon them which can often mean that they have no time for themselves.

It is important to take steps to avoid becoming burned out. Below are some tips to help you along the way.

1. Set boundaries. As a

5. Educate yourself about your loved one’s condition. Information is empowering.

6. There’s a difference between caring and doing. Be open to technologies and ideas that promote your loved one’s independence.

7. Trust your instincts. Most of the time they’ll lead you in the right direction.

8. Grieve for your losses, and then allow yourself to dream new dreams.

9.Stand up for your rights as a caregiver and a citizen.

10.Seek support from other caregivers. There is great strength in knowing you are not alone.


carer you have enough to do already. Don’t feel like you have to say “yes” to the requests of others.

2. Set realistic limits. Accept that you cannot do it all. No one should expect you to. You should not expect it of yourself.

3. Delegate responsibility and create a care team.. If you have others around you who are willing to help, take advantage of it.

4. Seek and accept help. If you have realistic limits you’ll know when it is time to ask for help – ask before you find yourself in a crisis. If someone offers help, take advantage of it.

5. Celebrate success. Celebrate your own success, no matter how seemingly small. Celebrate the successes of your loved one.

6. Take breaks. Taking periodic breaks to do something that gives you enjoyment and peace, even if it’s only a 10-minute break. It can help recharge you for the rest of the day.

7. Utilize respite care and adult day care. Accept that getting away from the care-giving situation helps you and your loved one. If you feel guilty about leaving

your loved one talk your feelings over with someone.

8. Identify what external resources are available, including carers training courses and physical aids

TIME oUT

The demands of caring may make it difficult for you to have time for yourself and have your own interests.

All caregivers need regular opportunities to relax and have a break from their care giving responsibilities. Taking time out for yourself, even if it is for a few hours a week, can make a big difference.

In some cases, it may be a physical break or time away, while in other cases it might simply be a chance to do something which they enjoy which is completely separate from their responsibilities.

Having time to relax, catch up with friends and family or learn a new skill can be beneficial to your wellbeing.

Different caregivers often want and need different types of breaks and support. Caregivers can be encouraged to think about creative approaches that

respond to their unique preferences, situations and needs. Some approaches used by caregivers of people with MS include:

A holiday or break away (together with, or separately from the person with MS)

Household help such as home cleaning or garden maintenance

Fitness programmes and sports activities

Hobbies such as crafts, gardening, woodworking

Individual or family counselling

Taking a course or learning a new skill for fun

support LinksIf you are felling worried or anxious, talking to someone about your situation can help. In many areas carer support groups can keep you in touch with other people who share similar experiences. See www.carers.net.nz or phone 0800 777 797 to find your nearest carer support group.

If you are finding your thoughts and emotions overwhelming, you may need extra support. Options include: * Talk to your doctor or another health professional about how you are feeling. * Call Lifeline 0800 543 354 * Call Youthline 0800 376 633 * Call Healthline 0800 611 116 * Call the Depression Helpline on 0800 111 757

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Page 24 ms. voice Sept 2011

Since it is unpredictable condition, many people with MS may have concerns about caring for a new born baby and the long term responsibilities of parenting. While parenting for someone diagnosed with MS requires more planning and preparation for the future, like all parents, with or without MS, you need to be able to provide a secure environment for your growing children.

Over time you may find that the responsibilities of parenting change to accommodate your changing abilities. You and your partner may need to take on different roles and change the way you do things. This is also true for parents without MS such as single parents. Having a financially sound plan and a good support network can also keep things running as smoothly as possible.

The important thing is to provide children with a secure and loving environment in which to grow. Sometimes this can mean being creative and thinking about other ways to support your children to participate in the activities they enjoy.

Many of the practical problems of being a parent with MS are limited to the child’s early and dependent years. This is the period when special equipment may be needed and alternate methods of child care may be employed to meet needs.

Planning and organisation

are needed to enable the parent to cope with additional demands on time and energy. As a result, adequate rest periods need to be a part of each day. The need to set priorities is important because of the extra demands a baby will place on energy levels. Energy can be conserved by identifying those tasks which the parent does not need to do. These can be accomplished by willing helpers. The parent should not be afraid to accept or ask for offers of help.Most importantly, a predictable and reliable

Parenting & MS

routine should be established. This routine needs to be flexible while still maximising efficiency. Energy, can be conserved by: having regular rest periods, simplifying work procedures and using the correct equipment.

Although much baby equipment is used for relatively short periods of time, it is worth selecting equipment to suit particular

needs. Furniture and equipment must be chosen with limitations in mind. It should be safe, sturdy and durable, and it should encourage the child’s early independence. With correct equipment, most of the tasks related to child care can be accomplished safely and with relative case.

When purchasing a crib the following considerations should be kept in mind. A crib with castors enables easy relocation. Such a crib can be simply positioned next to the parent’s bed for the baby’s personal

Bringing up children is not

an asy task, amd Multiple Sclerosis can add extra

challenges

PArenting Tips

Lifting & carrying

Until a baby begins to crawl and even for some time after that, it must be lifted and carried from place to place. Parents who have difficulty bending can minimise lifting by having as much equipment as possible at waist or wheelchair height. The child should be free of restrictive clothing so it can assist by holding onto the parent.

The strain of carrying can be reduced by the use of prams and baby carriers, by strapping the baby to the parent’s body and by encouraging independent mobility in the child.

Highchairs

When the baby is able to sit with support, a highchair is needed for feeding. A baby should be harnessed securely into the chair. Some parents find it convenient to have the highchair on castors so it can be wheeled to the area where the parent is working. Before buying a highchair the parent should trial the options available. Consider the height, weight, stability

It is important

energy

to conserve your

Selecting the right

equipment can

help


attendance. Lifting a baby from a crib is much easier if the mattress can be raised to a comfortable working height and the side rails can be lowered to mattress level. A lightweight foam mattress is easier to lift than one with inner springs. A plastic mattress cover will make cleaning up easier. Make sure the plastic coverings have plenty of padding on top so the baby does not suffocate or get hot. Fitted sheets will make for less work as they can be slipped over the corners of the mattress with one hand and need little smoothing.

Children who have a parent with MS can become confused and scared. Often this is due to lack of communication from the parents as they are worried about how to explain MS to the child.

Research has shown that most parents tend to talk to their children about MS on a “need-to-know” basis. In other words, they begin to talk about MS when the parent has a symptom that the children can clearly see, when the parent goes into the hospital for treatment, or when the parent begins

to use a new mobility aid. However, there is no right or wrong way to speak to your children about MS. How you tell them or how much you tell them is an individual decision – no two families are the same. You know your children best.

When choosing how to discuss your MS with your children it is important to recognise that children notice what goes on around them – they pick up on changes in atmosphere, emotions and what is not being said. The reasons conjured up by a child’s imagination are almost always far more dramatic and frightening than the reality. Therefore, it is usually a good idea to begin talking about the MS and its symptoms early on, so that a child’s understanding of it can grow and develop over time. Children will be less frightened by a reality they can talk about openly with their parents

Giving your child information about MS also allows for questions to be asked and reassurances to be given and reassures children that it’s okay to talk about MS. This also helps set the stage for good

communication about other issues.

Explaining an invisible symptom of MS such as fatigue or visual problems, will take some ingenuity on your part. You may like to try to give your child the experience of the symptom in a very concrete way. Examples of this might include walking for a few minutes with weights on both feet to give the experience of MS fatigue, looking through a mesh screen to experience one kind of visual distortion, or wrapping a bandage around the knee to mimic the stiffness caused by spasticity.

Once you have begun discussing the MS openly within your household, you might want to consider giving your child the opportunity to talk with other children who have a parent with MS. The MS Society in your region may offer or know of family programs where children can meet other kids and learn more about MS. It may also be beneficial for you to talk to other parents with MS for peer support.

Unfortunately, there is no single, correct answer to this question. How you tell them or how much you tell them is an individual decision – no two families are the same. Each child has a unique learning style. One may be fascinated by a picture book about MS while another responds best to small bits of information at a time. Some children enjoy going along when Mum or Dad visits the doctor, while others find this too upsetting.

The important thing is to answer your child’s questions as simply and honestly as you can. It is important to recognise that children notice what goes on around them – they pick up on changes in atmosphere, emotions and what is not being said. This can lead to MS becoming a ‘monster in the wardrobe’ – the child knows it exists but the parents tell them it is their imagination. Children imagine the worst

if things are not out in the open. Giving your child information about MS allows for questions to be asked and reassurances to be given. Open communication not only reassures children that it’s okay to talk about MS, but also helps set the stage for good communication about other issues.

For some families it may be helpful to have all of the family together when talking about MS with the children. A shared experience may make it easier for the child to confide in other family members with whatever thoughts and worries may arise in the future. Other parents may prefer to speak individually with each child.

Facts about MS should be presented a little bit at a time without too many details, and without talking about possible, future consequences – as they are, in fact, unpredictable. It is not negative for the child to witness the parent’s feelings. On the contrary, this may help the child feel more comfortable about

What is the best way to talk about

MS with children?

and manageability of the chair. Ensure the baby can be put in or taken out with ease.

Bathing

It is ideal for the parent to have a continuous work surface on which to change nappies, dress, undress the baby and bathe the baby.

A continuous surface will enable the parent to slide the baby rather than lift from one area to another. The height of the work surface must be right for the parent. A wheeled serving table or tea wagon with height adjustment makes a good portable dressing area. Nappies and other change equipment can be kept on a lower shelf and, if necessary, reached with tongs.

Play

An important piece of equipment is the toy box or bag. A box on castors will roll out of the way easily. A “helping hand (long handled pick-up stick) can be useful to assist with picking up toys and reduce the amount of bending. They are also good for retrieving things that have rolled under tables or chairs.

“Children imagine the

worst if things are

not out in the open.”

Should I talk about

my children?

MS with

“There is no right or wrong way to speak to your children about MS.”


sharing his or her own feelings.

Children may not ask questions spontaneously or talk about their thoughts and feelings. If this is the case, questions from the parent can be helpful in better understanding what the child is thinking, as well as whether he or she has understood the explanation about MS. However, it is important not to push too hard. Children typically do not need long explanations, and often respond and ask questions gradually when they feel the need to know something.

This, too, is a difficult question to answer and each family needs to assess its own needs and priorities. There are two main reasons why young children should not be asked to keep secrets. First, they are usually unable to do so. Second, being told that something needs to be kept a secret from others usually makes it seem shameful or bad. It is particularly important over the long run that children (and parents) not think of MS in this way.

In deciding whether or not to talk openly with children about the MS, each family must evaluate the potential consequences. For

example, a parent might not want the MS to be talked about outside the family if it poses a threat to employment. Balanced against this concern is the fact that children sense very clearly when one or another parent is ill or distressed and may develop their own worries about what is going on. These worries may be exhibited outside the family home, such as in the classroom or within their circle of friends. As you sort out your own priorities and concerns in this area, stay alert to your children’s signals. While they may not come right out and ask: “What is the matter?” they may demonstrate that they are curious, worried or upset in other ways.

Over time, information about MS is useful to children in a variety of ways. The information provides reassurance and helps them feel more secure. It creates a boundary around their fears so that overactive imaginations don’t make things more frightening than they need to be. Information provides children with a vocabulary for asking questions and helps prevent children from blaming themselves unnecessarily for turmoil or changes in the household. Most importantly, it reduces the need for secrecy and thereby promotes an atmosphere of openness and trust within the family.

Dressing

As the child gets older the parent can encourage him/her to dress independently. In the early years the parent will be required to do all of the dressing. It is therefore worthwhile to shop carefully for clothes, looking for features which will be the most manageable. Carefully selected clothing will prove to be an enormous time saver. Upkeep and ironing is reduced with wash and wear clothes.

Clothes chosen should have long or full length openings or ribbed necks that simply pull on over the baby’s head. Garments with raglan sleeves have larger arm holes, so are easier to get on and off than clothes with set-in sleeves. Buttons and fasteners can be replaced with Velcro closures for case of management.

Eating

When the baby begins to cat soft foods, an electric blender will save time and energy. Fruits and cooked vegetables can be pureed in bulk amounts and frozen in meal sized plastic containers. (Ice cube trays are a good size for those first meals). Enough can be prepared to last for a week at a time.

What if MS hasnot been disclosed

outside the family?

Page 30 ms. voice Sept 2011

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

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

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

So much living to do

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

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

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MS Voice Sept 2011