EditorialIn the last newsletter, we included in the section titled “Inspirational”, a piece by Cathy Alen, a mixed media artist from Santa Fe. She gave us her 8 titbits for the road. Jenny Simpson (committee), challenged me to come up with my own top three.

Jenny shared hers:1. Enjoy standing in the sun, especially when it

suddenly comes out.2. Even better, let the moon light wash over you.3. Laugh with delight.

I found this hard. Not thinking of things that are important and give me pleasure and satisfaction in life; but which three are most important. I think these are my top three (well for now anyway).1. Every day, remember to treasure those close

to you2. Kindness is one of the greatest gifts we can

give and receive3. Find at least one thing to laugh about each

day

Sometimes in the midst of the busyness of living, we forget to reflect and enjoy the things that are important to us. I know that I have to remind myself to stop hurrying forward and just live in the now. If anyone has a magic formula to achieve this, I would love to hear from you.

Some of you eagle eyed readers will have noticed that my name and picture have appeared on the MS Wellington website as the new field worker for the Wairarapa. I just wanted to reassure you, that even though for 12 hours a week I will be devoting my time to assisting the PwMS in the Wairarapa, that everything I write in the newsletter is done as a person with MS. My aim

Multiple SclerosisWellington

Wellington Multiple Sclerosis Newsletter

Winter Edition 2019

is to help give MS a voice in the Wellington region.

Be well. Shona

P.S. For those of you who cannot find Cathy Alen’s 8 titbits for the road in the last newsletter, and wish to be reminded of them:1. Stay curious.2. Asking for help does not mean anything other

than you need some help. Let people be heroes.

3. By all means live with a dog.4. Connect in small ways with those you don’t

think need it or want it even. There are worlds there.

5. Try so hard you fail often enough not to fear it.

6. Your purpose is just to exist. Anything else is extra.

7. Judge profusely for 5 minutes, max then soften back into yourself- nothing/no one can reach you if you are hardened into defense-mode.

8. Falling is just a new perspective. Look around. Find the gold. Bring it back.

In this issue:1. Have you seen our TradeMe Auction?2. Collection Week – we need your help -

see the back page3. What’s for dinner – page 14 and share

your recipes – page 134. Naltrexone and MS – page 85. Readers contributions – pages 5, 9, 12

AGMThis year’s AGM was held at the Red Cross Rooms, Lower Hutt on 25th May. The AGM was well attended. Following the meeting we all had a great

time catching up with each other over lunch. Many thanks to Catherine, Gillian and Katherine for organising a delicious lunch.

The new committee was voted in for 2019. Excitingly, two new members have been added – Alarna Sharratt and Vish Viswanathan. Bill Pitt was confirmed as President, Ross Judd as Treasurer and Vish Viswanathan as Vice President.

was in spired move and added a real depth to our discussions and learnings.

The Carers Workshop was held over two days at the Home of Compassion in Island Bay from 10am – 3pm. An excellent venue with great facilities. Nineteen people attended. The first day focussed on many aspects of caring. For some I think it was quite confronting and emotional but this seemed to balance out during the day. Informal feedback on this day was positive. The second day focus was on self-care, how to help yourself to cope as a carer for a loved one. The first day established a comradery that was evident on the second day and this made for a rewarding and useful experience.

Overall the feedback I received and the reactions I noted said that the concept was good and helpful to most if not all of the people involved.

This was in effect a pilot. You start with what seems a good idea and then work hard to make it work. It is a learning process, and feedback is vital.

William PittPresident

The Committee (L to R) Steve McCloskey, Bill Pitt, Laura Dempsey, Alarna Sharratt, Ross Judd and Vish Viswanathan… Absent : Jenny Simpson and Sam Fisher

Andy Woodside Award

This year’s award was presented by Anne and Alan with Maria Woodside to Noeline, Barry, Belinda, Abbey and Lisa Clark.

Carers WorkshopSome years ago, I attended a Carer’s Workshop. I found it very helpful to mix with other carers and share their experiences. The workshop was organised by an external organisation and involved a range of illnesses; cancer, muscular dystrophy, intellectual disability, severe physical disability and I was the sole representative from MS. It was for me an eyeopener on the role of a care giver, its challenges tribulations and perhaps, surprisingly, rewards. I got some good tips and a mental ‘tool kit’ to help me in the future. The biggest lesson was that I am not alone and that by reaching out I can get meaningful support and help.

I was so impressed I became an advocate for a similar workshop for people caring for PwMS. Our Field Workers shared my belief and have worked hard to bring it to fruition.

Coincidently WellElder the Wellington based Counselling Centre for Older People, were of the same opinion and offered to organise and facilitate a Workshop. They also suggested including other groups, Parkinson’s and Stroke Foundation. This

ResearchEffect of high-dose simvastatin on brain atrophy and disability in secondary progressive multiple sclerosis (MS-STAT): a randomised, placebo-controlled, phase 2 trialThe Lancet , 28 June 2014Jeremy Chataway, Nadine Schuerer, Ali Alsanousi, Dennis Chan, David MacManus, Kelvin Hunter, Val Anderson, Charles R M Bangham, Shona Clegg, Casper Nielsen, Nick C Fox, David Wilkie, Jennifer M Nicholas, Virginia L Calder, John Greenwood, Chris Frost, Richard Nicholas

Summary Background Secondary progressive multiple sclerosis, for which no satisfactory treatment presently exists, accounts for most of the disability in patients with multiple sclerosis. Simvastatin, which is widely used for treatment of vascular disease, with its excellent safety profile, has immunomodulatory and neuroprotective properties that could make it an appealing candidate drug for patients with secondary progressive multiple sclerosis. Methods We undertook a double-blind, controlled trial between Jan 28, 2008, and Nov 4, 2011, at three neuroscience centres in the UK. Patients aged 18–65 years with secondary progressive multiple sclerosis were randomly assigned (1:1), by a centralised web-based service with a block size of eight, to receive either 80 mg of simvastatin or placebo. Patients, treating physicians, and outcome assessors were masked to treatment allocation. The primary outcome was the annualised rate of whole-brain atrophy measured from serial volumetric MRI. Analyses were by intention to treat and per protocol. This trial is registered with ClinicalTrials.gov, number NCT00647348. Findings 140 participants were randomly assigned to receive either simvastatin (n=70) or placebo (n=70). The mean annualised atrophy rate was significantly lower in patients in the simvastatin group (0·288% per year [SD 0·521]) than in those in the placebo group (0·584% per year [0·498]). The adjusted difference in atrophy rate between groups was −0·254% per year (95% CI −0·422 to −0·087; p=0·003); a 43% reduction in annualised rate. Simvastatin was well tolerated, with no differences between the placebo and simvastatin groups in proportions of participants who had serious adverse events (14 [20%] vs nine [13%]). Interpretation High-dose simvastatin reduced the annualised rate of whole-brain atrophy compared with placebo, and was well tolerated and safe. These results support the advancement of this treatment to phase 3 testing.

Excerpt from a paper written and published by Gregg G Libby, BS, DC (USA) High Omega-6 to Omega-3 Ratio Increased Inflammatory and Autoimmune Disease Fatty acids (fats and oils) are among the most studied nutrients in human metabolism and health. An individual’s fatty acid status, influences health and disease via multiple mechanisms at all stages of the life cycle. Interest has focused in recent years on modern diets high in omega-6 and low in omega-3 fats associated with increased inflammatory and autoimmune disease. Types of Fatty Acids in the Diet Our diet contains a mixture of different types of fatty acids which are classified as saturated, monounsaturated and poly-unsaturated. Role of Fatty Acids in the Body: Burned / Stored / Cell Membranes / Signal Molecules The body uses fatty acids in many ways including burning for energy, storage in fat depots, and as a major structural component of all cell membranes. In addition, specific polyunsaturated fatty acids are converted to signaling molecules. Cell Membrane Fatty Acids Fulfil Many Functions Fatty acids are the main building blocks of cellular membranes making them critical for cell membrane structure by forming a protective barrier and to facilitate cell-to-cell communication. Cell membranes also serve as a reservoir for fatty acids. Specialized enzymes extract long-chain fats from the inner side of cell membranes and convert them to signaling molecules. Essential Fatty Acids (EFA) Cannot be Made in the Body Only two fatty acids are Essential Fatty Acids (EFA). The omega-6 linoleic acid (LA) and omega-3 alpha-linolenic acid (ALA). LA and ALA are ‘essential’ because they contain carbon–to-carbon double bonds that cannot be made in the body and therefore must be consumed in the diet. Only Long-Chain AA, EPA, DHA can be Converted to Signal Molecules Long-chain Omega-6 and omega-3 are converted throughout the body to signaling molecules called, prostaglandins and leukotrienes, which act as local hormones regulating metabolism and immune activity. Two Families of Essential Fatty Acids (EFA) LA Parent of the omega-6 family of poly-unsaturated EFAs ALA Parent of the omega-3 family of poly-unsaturated EFAs Omega-6 Family Short-chain Omega-6 (EFA) LA 18 carbons Long-chain Omega-6 (converted to inflammatory signals) AA 20 carbons Omega-3 Family Short-chain Omega-3 (EFA) ALA 18 carbons Long-chain Omega-3s (converted to anti-inflammatory signals) EPA 20 carbons DHA 22 carbons Insufficient Conversion to Long-Chain Fatty Acids in the Body Among individuals consuming Western diets, interconversion of short-chain ALA to long-chain omega-3s, EPA and DHA, is insufficient and does not produce adequate long-chain omega-3s. Omega-3 Sufficiency Requires EPA / DHA Foods & Supplements

According to the National Institutes of Health, “ALA can be converted into long-chain EPA and then to DHA, but the conversion is very limited. Therefore, consuming EPA and DHA directly from foods and/or dietary supplements is the only way to increase levels of these essential fatty acids in the body.

Reference: U.S. National Institutes of Health: Office of Dietary Supplements Omega-3 Fatty Acids: Fact Sheet for Health Professionals, Nov 2018

Lifestyle Modification in MS - Dr Jonathan White MBChB MRCOG ‘Researchers in Buffalo, New York took 175 people with MS or clinically isolated syndrome (CIS), and 42 “healthy controls”. Over a period of 5 years, they aimed to test whether factors known to be associated with cardiovascular disease; such as obesity, smoking, poor diet, lack of exercise and the presence of other health conditions such as diabetes or high blood pressure, might also have an effect on MRI findings and clinical progression rates in MS. Journal of Neurology

In a well-conducted study, using extremely robust and widely-accepted computing models and statistical analyses to establish cardiovascular risk and diet quality (Healthy Heart Score and Framington Coronary Heart Disease Risk Score), the team found some very interesting results regarding the effects of diet and lifestyle on MS.

OutcomesOne of their key outcome measures was that of brain atrophy rates. This refers to the amount of shrinkage of the brain over time due to loss of tissue, which is an area of increasing interest for MS researchers and pharmaceutical companies. As we age it is normal to lose between 0.25 and 0.4 percent brain tissue annually, but in MS this can be increased by two to three times. It is felt that much of the disability accumulation could be due to these accelerated rates of brain atrophy, and this is now a key measure in monitoring disease activity and testing the effectiveness of various new drug treatments.

MRIs were performed at the beginning and end of the 5-year follow-up period, and specifically looked for new MS lesions and several markers of central brain atrophy (white matter volume, grey matter volume and lateral ventricular volume). They found that those with MS who had the least healthy lifestyles had significantly more brain atrophy, and significantly more new lesions over the 5-year period than those with MS leading a healthier lifestyle.

Interestingly, brain atrophy rates were even worse in the healthy control group than the MS group when

they were matched for diet and lifestyle. So someone without MS had more brain atrophy if living an unhealthy lifestyle. This means that the partners and supporters of OMSers that also follow the program have much to gain in terms of disease prevention. We know that conditions such as Alzheimer’s disease and other forms of dementia are closely related to brain atrophy. It also alludes to the fact that there are likely to be other factors at play in the neurodegeneration seen with MS, other than just someone’s diet. The importance of the holistic OMS approach then, and the need for further research into the disease process, are paramount.

In conclusion, this research again demonstrates how lifestyle-based factors and cardiovascular health contribute to brain atrophy rates in people with MS, and also that unhealthier diets are associated with greater MS lesion accumulation over time. The authors deduced that lifestyle-based modifications may provide a beneficial effect on reducing brain atrophy in people with MS. If atrophy rates relate to long-term disability in the way that it is currently thought, then this should be viewed as hugely important to the health of all people with MS .

Dr Jonathan White MBChB MRCOG

Reference:Jakimovski, D., Weinstock-Guttman, B., Gandhi, S. et al. J Neurol (2019) 266: 866. https://doi.org/10.1007/s00415-019-09208-0

Reader ContributionsThree years ago, whilst changing the hand control from left to right on my wife Carole’s hand control on her electric wheel chair, I realised how important it was to her to maintain this last piece of independence. Her right hand had just become too weak to operate her chair. I wrote this poem.

Russell Fortune, Waikanae

Multiple SclerosisBy Janette Keown

Like a bird confined to its cage,My body feels the limits imposedWith legs all stiffened and arms very weakenedI long to fly free to wherever I chose

Like a lump of concrete, I sit in my wheelchairMy mind is still active and normal, I feelHow does one handle this frustrating illness And keep on living, staying bright and carefree

Things could be far worse, my daughter informs me‘Just think of your friends who have since passed away.Imagine the living that they have missed out onWith not having grandchildren coming to stay’

So I live for today and don’t dwell on the futureDelight in what I can use and don’t mourn for the pastLife is too short, to be angry and bitterEnjoy all the good things and hope they will last

Carole surrounded by her grandchildren. Sadly, Carole passed away in February 2019.

Editor’s NoteYou may remember in the last two newsletters we have been asking for all the writers out there to send it their poems, stories etc. so we could create an MS Wellington Poetry and Stories Book. We received some wonderful contributions, but unfortunately not enough for a book. With the permission of the contributors, instead of a book we will be including these poems and stories in this and future newsletters. If you would like your story or poem to be included in one of our newsletters email me at shona@mswellington.org.nz, or post in to P.O. Box 15024 Wellington 6243

Even if you are not a follower of Prof George Jelinek and the OMS Program, this article is well worth reading and considering. Ask yourself – does your view of MS make your life even more challenging?

Lucy Noble – Blogger 4 June 2019

Pessimism becomes a self-fulfilling prophecy; it reproduces itself by crippling our willingness to act.” Howard Zinn

How can we stop ourselves from being pessimistic? Language used about illness is more important than you might think. Professor Jelinek talks about this at length in step 4 of the book Overcoming Multiple Sclerosis (p.258). The way we feel about the illness, and how we refer to it, has an influence on our outcomes. Positive outcomes through positive thinking can start with positive speaking.

Words have power and emotional connotations - exploring these connotations can help us to explore our feelings. Why do we choose to use certain words? Why do we avoid other words? Choosing to use alternative words can help us to reframe negative thoughts.

Three elements George talks about in the book:

Sufferer, patientPatients are ill. If people see themselves as ‘suffering’ they will allow themselves to suffer. Don’t allow the illness to dominate you and become a sufferer.

At Overcoming MS we use "person with MS" or "pwMS". We avoid using words like "disease" or "illness" and prefer to refer to multiple sclerosis as a "condition" to live with. This encourages you to take a more active stance and make necessary lifestyle changes.

"My" illnessTaking ownership of MS by referring to it as "my illness" or "my MS" can be problematic. Think of MS as a condition about which you are actively doing something. You don't want to end up adopting it or needing it. Focus on other more productive areas of life.

FightingMS is a manifestation of an imbalance in your body. It is not some outside invader like malaria or a virus. All the cells involved in MS are your cells and part of you. It makes no sense to fight yourself. It’s not about fighting, it’s about healing.

We also discourage thinking of words such as hopelessness, impossible and decline. This encourages feelings of powerlessness and diminishes a sense of control.

Some words and phrases we encourage instead: hope, recovery, doing whatever it takes, better health, improved quality of life and healthier living. Think of our name and our tagline: Overcoming MS is possible. You need to be the captain of your own health ship. Take a positive and proactive stance to improve your outcomes. Using the mind-body connection is a critical part of getting well, of recovering, after a diagnosis of MS.

We asked ‘Which words would you like others to avoid while speaking to you about MS?’

This was in response to a poll that a cancer charity in the UK had shared where respondents expressed their dislike for terms such as "hero", "battle" and "warrior".

• I find "suffer" challenging. It is disempowering and suggests that the word "sympathy" or "pity" goes along with it instead of "empathy" or "manages", "lives well with". It's also about being kind to yourself. "Fighting" for life in general doesn't help anyone. It's actually perceived as a negative. Also with MS, you simply don't always have the energy to "fight". Do the best you can with what feels best for you and your body. Have compassion for yourself. It also depends on the context with MS in relation to which descriptors are used. Being that its an invisible disease makes some, without the knowledge of the disease, disbelieve the diverse discomfort and life changing challenges that are/can be experienced as an individual living with a chronic condition.

• It’s good to feel into how language makes us feel and respond but I don’t think we can censor words in general use as it is so individual isn’t it?

How do you view your MS?

When we embody words that feel powerful and inspiring to us, that can really connect us to our inner strength and previously untapped energies inside us. Personally, I find the word “warrior” powerful. Warrior energy has been described in all sorts of ways throughout time as an energy which says “I may get beaten down, but I rise again” or “I will stand up for myself and what is true to me”. Everyone, I believe, has this spirit inside them but when we are ill we may have to dig deep to find it. I have found my warrior spirit very empowering and it has allowed me to nurture myself in ways I could not before I found it. But it is very personal. I don’t personally like the MS-Monster type language I have seen written which vilifies MS. I live with MS 24-7 - I don’t live with a monster, I live with it as my teacher and guide to my self care, self nurture, self compassion and thriving.

• Personally, I don't like any of those "fighting" words. Like others, I think those type of aggressive words paint a negative picture... I prefer something like, "Living well with ms".

• I agree with that - the "fight vs cancer" line is great for fundraising but unhelpful as a healing metaphor. I remember being strongly drawn to the title of "Taking Control of Multiple Sclerosis" because the idea of taking some control over the disastrous, damaging process that I could feel harming me was very powerful. I recently had a shift in thinking about how I live with my MS. Like others, I am "living well with MS" and am taking a compassionate attitude toward this dis-ease. I am engaging in diet and lifestyle (& taking medication) changes to put my body at "ease."

• I'm living with MS. There's no cure, so I'm not fighting anything. I'm dealing with it the best I can and adapting as I need to. I can't even really say I'm "living well with MS" because I'm not. I'm on disability, I have what used to be called progressive relapsing, I know I'll continue to get worse and my list of everyday symptoms is very long. So I'm just living. Some days are ok, even great, and others in definitely struggling. I just roll with the punches.

• I don't see myself as a particularly strong person, I would never call myself a "fighter". Honestly, I don't even feel like I'm coping... With that in mind, I kind of feel like I am being put down or shamed by people who use these words... Sort of like I'm not good enough because I am weak, or lesser than them because they have a strength that I do not possess?

• I "work" with my MS. It’s so debilitating to fight it. I find it far more positive and calming to accept

that it is what it is, and then to say to oneself “ok, so what can I do about it. How best to make the best use of it.

• This all feels very constructive and useful. Seems we all like to think of living with MS, managing MS, controlling MS, understanding MS.

• I like the terms "overcoming" and "recovering from" to describe my relationship with the disease. I don’t like to call it "my MS" either - it is not a possession or a pet!

• I hate it when people say “sorry” when I tell them I have MS. I don’t see my MS as negatively as they do. I live with it and manage it as best I can. It’s not the end of the world.

• I find that ‘consciously controlling my multiple sclerosis’ works for myself and my limitations.

• Personally I find the word "fighting" negative. Fighting against something, whatever it may be, takes a lot of energy. My body needs all its energy. I also really don’t like to call it "MY MS". Whilst I understand MS is different person to person and that is why it gets this My. I feel MS still is MS and I don’t feel like I want to own it like a car.

• I tolerate it. Changed my lifestyle because of it. It is an inconvenience (big time) and I make the best of it. Inspiring

• We "manage" so many health ailments, why not MS? Manage makes me think taking control, taking stock of what’s working, what could improve. Moving forwards positively

What do you call a dog with no legs?

Doesn't matter what you call him, he's not coming.

Low Dose Naltrexone In our spring 2018 newsletter, Nick Brandon wrote the following:

When I saw Dr Graham Gulbransen in Auckland regarding a prescription for Medicinal Cannabis, he also suggested that I try Low Dose Naltrexone (LDN). So, I have been taking LDN for 3 months now and have found it very helpful. It’s mainly a mood therapy, tricking the brain into releasing naturally occurring endorphins into the bloodstream. The feeling is similar to a runner’s high which I used to enjoy before the MS stopped me from running.

The main benefits from LDN for me are better mood, a little more energy and better concentration to the extent that I am reading novels again

To read more about what Nick said in his article, look at the Newsletter on the MS wellington Website.

Nick’s Latest report:Update on Low Dose Naltrexone (LDN) – Nick Brandon

I have been taking LDN for about 9 months now. The dosage is a 4.5mg pill once a day. The benefits to my mental wellbeing are very positive. I think that almost anyone with depression or melancholia should ask their GP about this medication. It is relatively inexpensive at just over $1.00 per day.

For those of us living with MS there is another possible additional benefit from taking LDN. Over the longer term, it may trigger the release of a neurological repair agent called Brain Derived Neurotrophic Factor (BDNF). This is the body’s own natural means of healing and is usually released after strenuous exercise. It’s probably too soon to make a call on whether I’m experiencing any improvements, so I will report back at a later time.

There is a lot of information and a limited number of trials on the internet on the use of Low Dose naltrexone for the management of many autoimmune conditions including MS. If you are interested and feel you may benefit from this treatment, check it out – and talk to you Doctor. This medication requires a doctor’s prescription. - Editor

Naltrexone and MS - Medical New today By Jenna Fletcher Last reviewed Wed 12 June 2019 Reviewed by Alan Carter, PharmD

Low-dose naltrexone causes the body to release endorphins over an extended period. Endorphins are hormones that the body usually releases during stress or pain. They interact with the opiate receptors in the brain, which helps reduce the feelings of pain. Naltrexone may work for MS because endorphins help reduce inflammation. Inflammation is the underlying cause of MS symptoms.

Some anecdotal evidence supports using low-dose naltrexone for treating MS symptoms. This evidence is primarily from people who report noticing a reduction in symptoms after taking naltrexone.

However, clinical evidence is lacking, and what does exist appears to point out that naltrexone may not do much for people living with MS.

For example, a study published in 2017 looked at whether people taking naltrexone for MS reduced their use of other medications. This would suggest that naltrexone was working. However, the study found that few people reduced their use of other medications. Researchers found similar results in another study. They collected 10 years of clinical data and lab reports specifically looking at people who used naltrexone. They found that naltrexone is generally safe but likely does not have a significant effect on treating MS symptoms.

Still, doctors need more research to understand the effects of naltrexone on MS symptoms better. Specifically, studies need to look at the direct use of low-dose naltrexone to treat MS symptoms.

MS IN THE NEWSWellington woman's life-changing recovery after controversial multiple sclerosis treatment

JULIE JACOBSON April 18 2019

This story was originally published by Woman's Day and is republished with permission.

"I always knew I'd try everything before I'd let that happen."

Encouraged by stories of several other Kiwi women who'd received HSCT in Russia, Nicky spoke to her neurologist and GP about it. Her specialist said it wouldn't work as she'd had MS for too long and her doctor asked if she had someone to look after Zac if she died.

It took Nicky a year to pluck up the courage to take the first step – contacting renowned Russian haematologist Dr Denis Fedorenko from the National Pirogov Medical Surgical Centre.

"Initially, I was looking to go in May 2020," Nicky says. "I was scared and dreading it, but I thought, 'No, I'm getting worse – I have to go sooner.' So I bit the bullet."

Her family and friends set up a Givealittle page, and held movie nights, a breakfast and a charity dinner, then sold merchandise to raise the money needed for treatment, airfares and accommodation. Zac's school chipped in with a karma keg (where proceeds from drinks sold go to charity), while a very generous local businessman, who wished to remain anonymous, donated $25,000.

At just 44, Nicky Tooley was facing the reality of life without her mobility.

Having been diagnosed with multiple sclerosis at 22, her condition had grown progressively worse over the last seven years.

The once energetic single mum, who used to run 45 minutes each day and who thought nothing of hiking for hours around her home in Lower Hutt's western hills, had reached the stage where even walking around the supermarket was unbearable

Her feet were numb and sore, she suffered from chronic headaches and pins and needles, and she had become partially blind in one eye. Plus, memory loss, fatigue and an inability to concentrate were affecting her work as an account manager at her brother's packaging company.

Feeling that she was being robbed of a normal life and a future with her 13-year-old son Zac, Nicky pinned her hopes on an emerging but controversial therapy, hematopoietic stem cell treatment (HSCT), which uses a patient's stem cells to "reboot" the immune system and halt the progression of the disease.

But first there was the seemingly insurmountable matter of cost to tackle. HSCT is publicly funded in the US, UK, Mexico and Japan, but is not yet available in New Zealand. It comes with a huge $100,000 price tag and no guarantees of a cure.

However, Nicky, who tragically lost a sister to a brain tumour just over three years ago, was determined she wasn't going to end up in a wheelchair.

"He came to one of my fundraising events and saw me break down," says a very grateful Nicky.

"It reduced him and his wife to tears. He said he'd done well in business and wanted to help someone.

"I don't think I would have been able to do it without them."

Nicky landed in Moscow in October last year with her older sister Janine, 54. It was minus-two degrees and two weeks before her scheduled "stem cell birthday" on November 14.

The first step was an MRI, which revealed 50 lesions on her brain and that 95% of her spinal cord was blocked.

"Dr Fedorenko was amazed I was still able to walk. He thought it was only a matter of time before I would be in a wheelchair and he expected without treatment I'd be a quadriplegic within five years."

A raft of tests to ensure Nicky was well enough to have the treatment followed. She was then given drugs to stimulate stem cell growth before the cells were harvested via a catheter in her neck. She underwent four days of intensive chemotherapy to kill off harmful immune cells, with few side effects other than nausea, "which was managed", and hair loss.

The stem cells were then returned very slowly in order to minimise any negative reactions. Nicky spent the next nine days in isolation, until tests showed her white blood cell levels were high enough to prevent infection.

With her Russian medical team, including Dr Fedorenko (right)

Back in NZ, Nicky's anxious mother was looking after Zac.

Janine recalls, "Mum was the most worried. But being able to chat to Nicky every day and watch a lot of the procedures via Facebook Messenger really helped allay her fears. She felt that she was part of it all."

Today, Nicky is counting her blessings as she looks out over a tranquil Wellington Harbour.

She's on a recommended wheat, gluten and dairy-free diet, and has started going to the gym. She has also become an advocate for HSCT and is part of a group of MS sufferers involved in a video campaign calling on the Prime Minister to look into funding HSCT.

"I want to help other sufferers know about this treatment and to question our health system that doesn't allow it here. Basically, I want people to know that there's hope.

"I'm so thankful I had it," Nicky smiles. "I can walk for longer, my leg is stronger and my eye is better. I'm actually blown away with the results.

"I know there are no promises that my symptoms will continue to improve, but I also know I'm not going to get any worse. I no longer live with constant worry about what's going to happen next or how disabled I might become."

Adds Janine, "I have no doubts that it will work for Nicky. She's determined to get as fit and well as possible. I think it has changed her whole attitude to life. She is a much more positive and happy person now. It's been well worth it."

Helpful ToolsRecently at the Wairarapa Support Group, we had this amazing lady and her van from Easie Living, come to visit us. The van is full of gadgets and equipment to make life easier. No matter your level of disability, or even if you have no visible disability, there are heaps of assistance aids, and general household gadgets for you. Their shop is in Palmerston North, but they do have a website to do online shopping.

http://easieliving.co.nz/ 06 353 2743 or 027 551 7948

My favourite purchases – the best can opener ever, it’s so easy to use, a nifty gadget for pulling the tear tags on tins without breaking the tear tag, and a gadget to release the seal on a jar making it so much easier to open

Treatment Update – Stem Cell treatment in New Zealand

deployment – i.e stem cells derived from your own fat.

Your stem cells are your body’s natural healing cells. They are recruited by chemical signals emitted by damaged tissues to repair and regenerate your damaged cells. Stem cells derived from your own tissues may well be the next major advance in medicine.

NZ Stem Cell Treatment Centre (NZSCTC) has the technology to produce a solution rich with your own stem cells. Using SVF therapy protocols, these can be deployed to treat a number of degenerative conditions and diseases.

If you would like to find out more about this treatment, check out their website: http://www.stemcell.co.nz/

We have all heard about the stem cell treatment available in Singapore, Russia and Mexico. There is now a form of stem cell treatment available at NZ Stem Cell Treatment Centre (NZSCTC) . There are two clinics – Whangarei and Queenstown. The process appears to be similar to the overseas treatment with the exception of the chemotherapy component. A person’s own stem cells are harvested, processed and injected back at a higher potency. Unlike the overseas treatment, a course of chemotherapy is not given between the harvesting of cells and the reintroduction.

This is what Stem Cell Treatment New Zealand say on their website: Early stem cell research has traditionally been associated with the controversial use of embryonic stem cells. New Zealand Stem Cell Treatment Centre uses adipose derived stem cells for

Janette Keown, from Petone, recently received this form of Stem Cell Treatment in AucklandJanette Keown has always been up for a challenge and is never one to give up. She has had progressive MS for a long time now but doesn’t let it interfere with what she wants to achieve. This ranges from overseas travel, to university study and most recently Stem cell therapy in Auckland. Jeanette went in to this latest adventure with her eyes wide open. She did not expect a miracle cure but would be happy with the smallest improvements. She kept a diary so she could track any changes and is happy to share these with others.

Janette states that she is feeling better in everyway; “I have lost a lot of fluid around my legs and ankles while still tolerating the hot temperatures a lot better. I have also lost some belly fat! A sideline bonus of the treatment! My skin has definitely improved with the rashes on my face clearing up. The restless legs that I have been experiencing have now completely gone along with the spasticity in my left leg. I do not need any pain killers. My Digestive and urinary systems showing marked improvements. One week after treatment and I am thinking more clearly, more motivated and feeling in fingers on right hand has improved.” Janette feels less fatigued and has a lot more energy.

“12 days since treatment, I have felt a few subtle changes such as no hot feet by late afternoon; co-ordination much improved; what I used to regard as bladder nerve pain has gone. Yesterday I had my normal weekly ration of cashew nuts and noticed I was picking up one nut at a time without fumbling or dropping any. It was the same this morning. I was able to take the score at scrabble – have not done that for two years.”

Well done Janette. Thank you for sharing your story. We are so pleased you have experienced a good result and continue to wish you well. For more information Janette has shared the following websites.https://www.stemcelldocuseries.com/optin/ http://www.stemcell.co.nz/what-can-be-treated/

Gillian Fry, Fieldworker Porirua and Hutt Valley

Truly InspirationalBy Lucie Williams

I was diagnosed late 2014. I learnt about OMS at a workshop organized by the MS Society for newly diagnosed people early 2015, where we were given George Jelinek’s (the founder of OMS) book. To be given a

tool that enabled me to take back control over the disease was life saving for me. Since then, I eat a whole food plant based diet with sea food, I exercise 4 to 5 times a week and I try to meditate every day. Life tends to get in the way and it takes a lot of discipline to stick to the routine. Attending a retreat at the Gawler Foundation in Australia in 2016 helped with motivation.

Editor - 4 hours and 15 minutes is impressive even without MS!

At the next workshop for newly diagnosed where

I was one of the speakers talking about the OMS program, I heard about a book called “You are the placebo”. In short, it tells you about the self-healing powers of the body and the power of visualization. So after reading it, I visualized myself walking the Tongariro Crossing again (I had done that walk in 2010), which was a totally unrealistic goal at the time. A couple of years later, after a three months training towards that goal, I set myself to walk the Crossing on the 3rd of May this year. It was tough but it was totally worth it!

Kylie from ExerciseWell has been fantastic in helping me. I can walk much better than 18 months or even a year ago so I’m really pleased, even if I’m not symptom free.” Kylie from ExerciseWell has clinics in Tawa and Paraparaumu and can tailor exercise sessions for you individually https://www.exercisewell.co.nz/ . I see from her website that new clients can get a free initial consultation.

Featured in our Autumn 2019 Newsletter Advanced Care Planning

The Health Quality & Safety Commission (HQSC) has launched a national public-facing advance care planning campaign, in the lead-up to advance care planning day on 5 April.

The campaign encourages people to plan for their future health care and features videos of six individuals’ personal advance care planning stories, which will be shared via social media each week leading up to 5 April.

Advance care planning is an important aspect of helping people to take control of their own health. It helps people to clarify their thinking about what’s important to them in the future, including as they

near the end of their life. Knowing a patient’s values and what is important to them can make their treatment approach clearer and easier to follow. The HQSC resources and videos can be accessed on HQSC’s advance care planning website. You can start your own ACP here My ACP or talk to your General Practice staff. For more local information about ACP email acp@ccdhb.org.nz

Helen Rigby Advance Care Planning FacilitatorWairarapa, Hutt Valley and Capital & Coast Districtsddi 04 806 2451 | e helen.rigby@sidu.org.nzmob 027 534 1336

Editor’s note: Our local MS support group had a guest speaker come and talk to us about the value of advanced care planning. Far from being depressing, it was both a lively and insightful session on the value of everyone doing an advance care plan. It is a way to ensure that your wishes on how you would like to be treated and cared for, are carried out, at a time when you are unable to say. It is important for everyone to do one, not just for those who have a chronic illness like MS. No one knows what path their future will take. It is also something kind you can do for your loved ones; relieving them of the task of advocating on your behalf at an extremely stressful time.

Calling all Cooks – your contributions are going well, but we still have space for more

As a Fundraiser, Wellington MS Society is collating your recipes and producing a cookbook.

A great book to sell to those who say that they don’t know what to cook for you when you come around

As a group of people, we have quite diverse dietary needs. Some of us are vegan, some gluten free, others are on the OMS (Overcoming Multiple Sclerosis) diet, and some have no restrictions at all.

BUT What we all have in common is we all love to eat!

So keep sending in your favourite recipes to info@mswellington.org.nz

I have an inferiority complex but it's not a very good one.

Pumpkin, Cauliflower and Lentil Korma Dairy free and suitable for someone on OMS diet

2 red onions, cut into quarters400gms pumpkin, peeled and chopped into 1- 1.5cm cubes½ cauliflower, cut into florets1 tbsp water¼ cup of red curry paste200mls coconut cream, or 1 cup soy/almond milk with ¼ tsp of coconut essence1 tin of cooked brown lentils

Heat oven to 200 C.Put onions, pumpkin and cauliflower in roasting dish with water. Cook 30-35mins until vegetables are soft and cauliflower is brown and crispy on edges. Mix curry paste and coconut milk or soy/almond milk and pour over vegetables and stir through lentils. Return to oven and cook a further 10 minutes.

Sprinkle with coriander if desired. Serve with rice.

If you do not wish to use a commercial brand of curry paste because of added oil, you can find plenty of recipes on line. Here is the recipe I use:

RED CURRY PASTE

Blend together:4 medium red chillies – include seeds if you want extra hot2 tsp ground coriander2 tsp cumin4 stems lemon grass, trimmed and chopped2 level teaspoons grated fresh ginger4 shallots or spring onions6 cloves garlicgrated zest and juice 2 limes2 tbsp paprika

Excess paste can be kept in fridge for a couple of weeks or frozen.

Recipes

Wellington Curtain Bank makes free, made to measure lined curtains for Community Service Card Holders

The Curtain Bank will provide curtains for the living room and the main sleeping areas.

It can be for people who own their home or rent, but they must have a Community Services Card.

Only one person in the house needs to have a Community Services Card for the whole house to be eligible. And the person does not need to be the owner or leaseholder.

Individuals can apply on line at any time!, or complete the form below and send it in I have also attached a form they can print and send in to us.

Because the curtains are made to measure, they do take up to six weeks to make (I know, it’s hard to think about winter when the weather has been sensational).

For more information call the Curtain Bank on Freephone 0508 78 78 24 ext 705 OR check out https://sustaintrust.org.nz/pages/free-curtains

The Alinker “Keep Moving Programme”MSW has two Alinker bikes that you can borrow.

The Alinker is a modified walking bike/trike that can be used for personal exercise or transport as well as rehabilitation.

If you would like to try or borrow an Alinker from MSW you need to be set up by a health professional, as there are limitations and risks for its use for people with restricted mobility. Please contact us if you are interested in trialling the Alinker, phone 3888127 or email info@mswellington.org.nz

Share Your MS JourneyWould you like to share your personal story in our Newsletter? Or provide some tips and hints for other readers – things that work, things that don't.

We are always keen for new contributors.

Please email info@mswellington.org.nz or ring and leave a message 04 3888127

Noticeboard!

TradeMe Auction Wellington MS is running a featured charity auction - with TradeMe.

Over September we will be offering items on TradeMe, they will feature our items and we won't pay success fees.

All money raised will go straight to the services we run, in particular our Field Workers.

What we need are 10 - 15 tidy items for the auctions. So any treasures that you have or know of that we can have, please let us know. BUT we want items we can pick up, mail, and are clean and have some value.

We’ll need to photograph all of them at some point we will have to collect them. Items we have been bequeathed are good, or things lying in the garage gathering dusk.

Nothing broken (even though that would make our point very well). We will try and make links to MS with each item.

Anything to offer or questions send us an email info@mswellington.org.nz

Nothing too large thanks, as we have to mail it!

Save these dates!

Thank YouWellington MS would like to thank the following for their continuing support:

• Pub Charity • Lottery Grants Board• The Jack Jeffs Charitable Trust• TG McCarthy Trust

• Rehabilitation Welfare Trust • Four Winds • Community Organisation Grants Scheme• Walter & Rana Norwood Charitable Trust

We would also like to thank Our Unsung Heros, who regularly donate to Wellington MS, your support is much appreciated.

Disclaimer: The views and opinions expressed it this newslettter are those of the authors and not necessarily those of the Wellington Multiple Sclerosis Society.

The Wellington Mulitple Sclerosis Society accepts no responsibility for accuracy of information contained within this newsletter.

• Ministry of Health• Nikau Foundation • Kaffee eis• RNZB

A lasting Gift A number of families have requested that donations be made to the Wellington Multiple Sclerosis Society in lieu of flowers. We offer our thanks to all those who have made contributions as a symbol of friendship and support.Including a gift to Wellington Multiple Sclerosis Society in your Will can help those affected by MS and their families.People leave bequests of all sizes and no gift is too small to make a positive difference. Seek advise from your Solicitor and ask about adding a simple codicil rather than writing a new Will. Please be assured that any Bequest will directly assist those living with MS and the services the Society provides.

Wednesday 18 September Outside Railway StationWoodward StreetCable Car LaneMetro New WorldThorndon New WorldChaffers New World Carterton New World Greytown Fresh Choice

Thursday 19 September Newlands New World Porirua New World Russell St CountdownUpper Hutt PaknSave Silverstream New World

Friday 20 SeptemberQueensgate Countdown Lower Hutt New WorldPetone PaknSaveParemata New WorldParaparaumu PaknSaveWaikanae New World Masterton New World

Annual Street CollectionWith about two months to our Annual Collection now is the time to let us know when you can help - details below for locations and days. For a successful MSW collection we are reliant on you! Let us know when you can help by emailing catherine@mswellington.org.nz