EditorialMy dear friend Jenny and I often debate the question “to tell or not to tell”. Jenny takes the stance that even though she has had MS for a considerable number of years, she has chosen to only tell a few people that she has MS. Jenny is of the opinion that if people know that she has MS she will always be judged as a person with MS. I, however take the opposite view that if people know I have MS, then I don’t have to waste energy on pretending otherwise. I believe people should judge me on my actions not my MS.

This is a question that everyone with MS faces. Despite our friendly and often robust discussions, Jenny and I have never come up with a “one size fits all” solution.

I believe the most important thing is to be comfortable with your decision. It is important that the benefits of whatever decision you make,

become evident to you. We all know that stress is the enemy of MS. Hopefully we are all able to make a decision for ourselves that lessens rather than exacerbates our own stress level.

Be well. Shona

Multiple SclerosisWellington

Wellington Multiple Sclerosis Newsletter

Spring Edition 2018

From the PresidentThat this is our last newsletter for the year simply reminds me how quick the year has gone. It has been I believe a very good year for the Wellington Society. A successful collection with donations just over $17,000, a 7% increase on last year. A very successful AGM with increased attendance, new members for our committee and an enjoyable networking occasion. Three newsletters all of good quality and most importantly informative and useful. A culmination of the years activities has been the highly successful, based on your feedback, series of road shows featuring Professor Anne Le Flamme, an

exercise physiologist and yoga experts. A resurgence of interest and activity in the Wairarapa is also a standout for me.

These good results have been achieved through having committed staff, a supportive committee, but most importantly a membership, which is responding to the opportunities presented, and supporting the society.

I would like to wish you all, the very best for the upcoming festive season and hope you can share this with those people who mean the most to you. Please keep safe. I look forward to sharing this message with many of you at the support groups Christmas meetings.

I would love to wish you improving health in the New Year but will hope instead for remissions and stabilisation.

Thank youGreetings and I hope you are well and recovered from the collection days and the road shows. It has been a full - on time and the last two weeks has provided a good opportunity to wind down and, in my case to reflect on what has been achieved.

I have just finished writing personal notes to our presenters and discussion panel participants. I have thanked them for their help and support and how their input contributed to an excellent event. I was going to write to you similarly but have opted to write to you collectively because in my opinion it was the collective aspect of the road shows that made them stand out and be as successful as they were.

Our four staff members, Catherine, Gillian, Janet and Katherine stood out with their planning, organisation and successfully running the event. Shona as a panellist and support person at each of the events. Steve helping in the Hutt and Laura as a panellist with Alarna supporting us at Kenepuru. What more could you ask for.

The formal feedback from each event was excellent. What stood out for me was the informal feedback I got at the conclusion of each event. People did not

Our FundingAt our AGM in May we abolished membership fees; Not memberships just the fee. This does not negate the need for members and we must encourage people to join MSW. (Further details about this are on the front page of the Winter ’18 edition of our newsletter).

A strong membership base is essential. It demonstrates that the Society is needed by PwMS and that they support the Society's activities. Funding providers always take into account community support and a strong membership base can readily show this. Please encourage family and friends to demonstrate their support and interest by joining. We believe that removing the cost of membership will mean that in lieu of a membership fee people will donate to the Society. MSW needs donations to continue to exist. Donations of $5 or more can be provided with a receipt to claim tax back. We are a charity and only get about 15% of our required funding from the Government.

We already have many unsung heros who regularly donate, this can range from as little as $5 - $20 per month and every contribution makes a difference to PwMS, their family/whanau and support networks. Funding also assists PwMS with educating health professionals, the general public and advocating for PwMS.

There are several other ways you can assist

Regular Donations by internet bankingThese go to our day-to-day running costs of our Field Worker service

BequestsA bequest in your will can go towards our day-to-day work or a specific project.

Donations to our general fund will ensure that our services continue for PwMS.orSpecific project donations can fund a specific project, one that already exists or one you would like to develop.

Christmas GiftWe all have people in our lives who now say they do not want ‘more stuff’ but you feel you still want to

seem to want to run off but preferred to stay around just to chat. I believe the supportive environment had much to do with this and the sense of sharing something with people that really understood.

Thank you all so very much.

Regards and best wishes,

Bill Pitt (President)

MSW 2018 Road Shows During September, MSW ran 3 Road Shows. One each in the Hutt, Wairarapa and Porirua. Each Road Show had a similar focus but with a local flavour. There were three sessions at each: the latest MS research on medications presented by Professor Anne Le Flamme, followed by either Kylie Chapman a clinical exercise physiologist or Odette Rowe an experienced yoga teacher. The final session after an OMS friendly lunch was a panel with a MSW field worker, a local PwMS (person with MS), someone who had received HSCT (stem cell therapy), an OT (Occupational Therapist) and NASC (Needs Assessment) professional. The key of all the sessions was to discuss current research, therapies, treatments and lifestyle factors that can help with MS.

The feedback received on these sessions was very positive and encouraging

“Prof Anne La Flamme – She made her topic really interesting at a level that everyone understood”

“The opportunity to mix with others with MS, to meet some of the committee members and listen to all the speakers – all in all very informative”

“All of it was captivating stuff”

As our President, William Pitt, said one of the stand out aspects of the Road Shows the support and energy of the MS community. People with MS were to the fore, they not only attended the Road Shows

they also participated through the panel discussion and the questions and answer sessions. Our Executive Officer and the Field Workers put in a huge amount of work to make the Road Shows a success with admin, structure and logistical support and amazing lunches.

give them a gift. Why not a donation to Wellington Multiple Sclerosis?

A donation as a Christmas gift has many benefits. Both you and the recipient are improving the lives of others, its quick and easy, and means the ‘difficult’ or ‘do not need more stuff’ people still get something. Everyone feels good about their gift due to the difference they have made to the lives of others. Also a card reminder on their mantle piece will keep the warm fuzzes flowing well after Christmas and into the New Year.

For more information or to purchase a Christmas Gift please contact Catherine on catherine@mswellington.org.nz or phone 04 388 8127, or if you prefer post send a note to PO Box 15024, Wellington 62243.

Red Cross AngelsFor over 30 years these wonderful ladies each month have been hosting, baking and serving morning tea for the Lower Hutt MS Support Group at the Red Cross rooms in Lower Hutt. Not only are they the best bakers in town but they always have a smile and a chat for everyone in the Group.

We do so appreciate everything they have done for our Lower Hutt Group and The Wellington MS Society.

Here they are pictured with some flowers from The Society to celebrate National Volunteer week.

Left to right Joyce, Judy, Vivienne, Sheila. Absent Molly and Dawn.

When I saw Dr Graham Gulbransen in Auckland regarding a prescription for MC, he also suggested that I try Low Dose Naltrexone (LDN). After reading up on it we were surprised that none of the medical professionals I have had the pleasure to meet over the last seven years had ever mentioned it as a possible therapy. In many Scandinavian countries, it is one of the first things that is prescribed. 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.

This drug was originally used to treat drug and alcohol addictions at 50 mg per day and its’ been around since the 1980’s. So, it is no longer under patent protection which means it’s very cheap - $35 per month. Repurposing drugs is becoming quite

Follow up report on Medicinal Cannabis (MC) by Nick Brandon

common, but as there is no money in it for Big (Pig) Pharma it is not promoted and few doctors know about it. If you want to try LDN start by asking your

MysteriouS MSTo draw attention to MSW collection period in August for September we ran a Facebook campaign so people with MS can share their stories and encourage a greater awareness of the disease.

MS is not well understood. It affects New Zealanders of all ages and backgrounds. And for those that have it the onset is quite devastating. It is not genetic, although genetics play a part. It may not progress, but sadly in some cases it does, and dramatically. It’s not, at this stage curable- but scientists are working

• Since succumbing to a wheelchair 11 years ago, my favourite past-time of shopping has turned into a nerve-wracking logistical exercise of precision steering and good luck! This has been even more so since I recently moved to Petone where the shops are old; some have a step up inside with narrow doorways.

A friend recently gave me a couple of handmade chocolates from ‘The Chocolate Story’ in Petone and was telling me what a wonderful selection of handcrafted chocolates were sold there, when she added “but you wouldn’t be able to go inside as the doorway is so narrow and there is not enough room inside for a wheelchair”. I felt very frustrated about this and so, when the opportunity came to make an issue, I went along to the shop with my photographer in tow!

Imagine my delight and amazement when I found that not only could I get in but there was enough room to slowly move around to look at the stock. Not only that, but the owners had a very conveniently placed shelf near the counter which had proven very useful for wheelchair users.

I left the shop with a little bag of delightful purchases, vowing to return in a couple of months to buy some Christmas gifts.

GP and see if they know about it and if they don’t then ask them to educate themselves.

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. I think this drug is worth a try. It can do no harm at low doses. Of particular interest to MS sufferers is that LDN is said to stimulate the production of Brain Derived Neurotropic Factor (BDNF). This is a natural neurological repair agent and so long term, it may repair myelin damage.

After about 6 weeks on the LDN I started taking the Tilray product prescribed to me - CBD 100. It costs $560 for a 25ml bottle and it is 100% CBD mixed with vegetable oil. You need to take at least 0.5 ml to get any effect and its very subtle. I thought it was not having any effect but then I stopped taking it and noticed immediately.

At 0.5 ml per day the bottle lasts 50 days so quite expensive for little benefit. If you increased the daily dose to 1.0ml which I suspect is the amount needed for therapeutic benefit then it becomes very expensive at over $600 per month.

From my research on the topic, it seems that for MC to be effective for treating MS, it needs to include a quantity of THC (30 - 40 %). Everyone is different and so you need to experiment to find the mixture that works best for you. Unfortunately, that level of sophistication is not available here. In many other countries, a range of products are available over the counter or on prescription, but here in NZ our political leaders and bureaucrats have a very conservative attitude towards MC. The Misuse of Drugs Amendment Bill is still unchanged after the select committee process but there is a chance for meaningful change when the Bill is debated in the house. Meaningful change will only happen if NZ First will bend from their stated position so anything you can do to influence any NZ First MPs would be greatly appreciated.

on it. We don’t know what causes it. We don’t know why some people get it whilst others don’t.

MS is MysteriouS. Explaining to others what it is like to have MS can be difficult. These are four of our stories.

• What MS means to me - When you meet me, you may not realise I have MS. I look well. Most of my symptoms are hidden but like many people with MS, I experience a lot of pain. You cannot see pain. Every day it feels like my feet are on fire. I am a very positive person and like to appear happy all the time, but sometimes I find it hard to pretend that all is well.

Janette Keown • “To me M.S means the “old me” no longer exists and the “new me” isn’t someone I want to be. I miss the physical and mental stamina I used to have, I wish I wasn’t always in pain and needing to fit each day around my illness.

My photo represents my daily struggle with Sensory Overload. Too much noise and visual stimulation makes me dizzy and fatigued and feels like my brain is deflating. My skin is also very sensitive and can feel like I’m burning.

Through all of this though, I try and keep positive and active and remain hopeful of a cure.”

• One of the hidden symptoms of MS is cognitive impairment commonly referred to as “ brain fog” which tends to worsen as the disease progresses. The MS lesions in the brain effectively create a brain injury. This leads to difficulty in understanding or completing quite simple everyday tasks, and poor decision-making. When faced with choices which have been easily dealt with in the past, reasoning and decision making become confused and ill-considered. This can detrimentally affect personal relationships as our power to comprehend the words and actions of those closest to us is distorted and our behaviour appears to becomes unpredictable and even destructive. Frustration and irritability tend to result from the reduced ability to function as before.

I was a commercial property consultant for over 30 years involved with negotiating and managing large scale development projects. At the age of 56 I found I could no longer perform my work at a satisfactory level. I have been medically retired for 4 years.

From the time of diagnosis, I mentally prepared myself for the physical deterioration that would probably impact my life. But I had no idea that my brain function would also decline. I count myself lucky that I had lots of good years, as many people with MS reach the point of being forced to stop work much earlier.

Did you enjoy these stories, would you like to write one about your own experience? You do not have to have MS just an association with MS, we are looking to expand the story. Are you a caregiver, family member (partner, child, parent), friend, health professional … interested in helping us de-Mystify MS email us on info@mswellington.org.nz

Mexico Trip for Stem Cell Treatment

Paul Gruschow

I travelled to Puebla Mexico in late April this year to undertake HSCT treatment for my Multiple Sclerosis. The new Ruiz facility where I stayed has only just been opened. We were the second group of patients to go through it. The facility includes a restaurant, medical offices. apartments for the patients, gym, and a roof where area we spent a lot of time at because it has tables and chairs together with views of the city and local volcanoes.

There were eight patients staying and receiving treatment that month. I had travelled to Puebla with my friend Frances who also has progressive MS. Six others were women from NZ, Australia, Scotland, USA, and Denmark. There was one other man who was South African, but lives in England.

Photos top to bottom: Daniel White Music; some caring Super Heros; Abbey, an expert collector

Collection 2018MSW Collection 2018 was run over a number of days and weeks due to clashes with other large organisation collections. Despite the length of time, momentum was maintained. The money collected was up 6% on the previous year. $17,000 was collected across the region.

Many interesting stories came out of our collection. Standing outside the Wellington Railway Station, a supermarket or a street corner you see people in a new light. Those who look as though they can give but apparently do not see you, those who look like they need help themselves open their wallets. The most common comment is “this is all I have” and then empty their loose change into your bucket. Out

response is “thank you, if everyone did this we would be very lucky. It all helps”

Collection is not possible without the support of all the people who help us and this much appreciated.

Patients were split into two groups of four. Each group had a van and the driver at their disposal. The van was used to transport the group to offsite medical treatments and other excursions. The Groups received their treatment separately but still mixed socially when back at base.

Dr Ruiz and his organisation have been undertaking HSCT procedures for 20 years and have hosted 700 patients. The first day consisted of medical tests which confirmed our suitability for the treatment. Over the following days, we received drug treatment to encourage the production of stem cells in our bodies. After about 2 weeks we had pic lines inserted into our chests at a very posh private hospital. The following day we went to the haematology clinic for stem cell extraction. Once it has established that enough stem cells had been extracted (1 million per kilo of body weight), we had a few more hours of chemotherapy. The stem cells where then put back in, and we were placed in isolation and on special diets. Over the next 10 days we had blood tests every second day and observed our white blood cells reducing and finally returning to more normal levels. I am happy with my progress so far but it takes 2 years for things to settle down and perhaps longer to see if progression has ceased.

The medical and support staff were always professional and supportive and I would highly recommend HSCT at Puebla to suitable candidates.

This is a brief summary of a month of treatment there is much more I can discuss interested people. Questions to pgruschow@gmail.com

Latest ResearchIf you love reading the latest research, have you thought about joining the Neurological Foundation of New Zealand? For an annual subscription of $5 you receive four ‘Headlines” magazines that summarise the latest neurological research going on in NZ. It is also a great way to support the research that may eventually find a “cure” for MS and ways to repair the damage to our bodies that MS has already done. Check out: www.neurological.org.nz

New Roadmap for Repairing Damage of Multiple Sclerosis July 2018

Cleveland, OH (Scicasts) — Research published today in the journal Nature provides new understanding about how drugs can repair damaged brain cells that cause disability in patients with multiple sclerosis.

Led by researchers at Case Western Reserve University School of Medicine, the study suggests new drug targets and potent early-stage drug candidates could lead to regenerative medicines for multiple sclerosis and other debilitating neurological diseases.

Multiple sclerosis, a chronic and progressive disease affecting millions worldwide, is characterized by damage to the protective sheath that surrounds nerve cells. Without this insulating layer, called myelin, nerve cells in the brain and spinal cord struggle to transmit electrical impulses. As a result, multiple sclerosis patients suffer progressive loss of motor skills, vision and balance.

The new study describes how drugs work to replenish myelin destroyed by multiple sclerosis. While the brain is known to have some capacity to regenerate new myelin during the early stages of multiple sclerosis, this innate repair process is overwhelmed as the disease progresses.

“Many labs, including at Case Western Reserve, had identified drug candidates that kickstart the formation of new myelin, but exactly how each of these molecules affected brain cell function wasn’t clear,” said Dr. Drew Adams.

This study builds on prior work by co-author Dr. Paul Tesar, the Dr. Donald and Ruth Weber Goodman Professor of Innovative Therapeutics and associate professor of genetics and genome sciences at Case Western Reserve University School of Medicine. In work reported in 2015 in Nature, Tesar identified a drug typically used to treat athlete’s foot, called miconazole, as a potent enhancer of new myelin.

In the current study, teams led by Adams and Tesar demonstrated that miconazole enhanced myelin

formation by inhibiting an enzyme used by brain stem cells to produce cholesterol. Subsequent experiments identified more than 20 new drugs that enhance myelin formation by inhibiting closely-related cholesterol-producing enzymes.

Notably, several drugs accelerated myelin repair in mouse models of multiple sclerosis.

“Together these studies provide new drug targets, new drug candidates, and new cholesterol pathway biomarkers to propel the development of medicines that can replenish lost myelin in patients with multiple sclerosis and related diseases,” said Adams. While clinical candidates based on this work are not expected to enter clinical trials until 2019, say the authors, the new understanding of myelin repair provides a promising new path toward novel, regenerative multiple sclerosis treatments.

Article adapted from a Case Western Reserve University news release.

* Doctors Discover New Type of Multiple Sclerosis

By Robert Preidt HealthDay Reporter

THURSDAY, Aug. 23, 2018 (HealthDay News) -- A new subtype of multiple sclerosis (MS) has been identified by researchers, and the discovery changes understanding of the disease.

MS has long been considered a disease of the brain’s white matter, where immune cells destroy the fatty protective covering (myelin) on nerve cells. The destruction of myelin (demyelination) is linked to nerve cell death that leads to progressive disability in MS patients.

However, the newly identified subtype of MS -- called myelocortical MS (MCMS) -- features the loss of neurons but no damage to the brain’s white matter.

In the study, researchers analyzed brain tissue from 100 MS patients who donated their brains after death. The investigators found that 12 of the brains did not have white matter demyelination.

While alive, MRI brain scans of those 12 patients were indistinguishable from those with traditional MS, the study authors said. That’s because part of the neurons were swollen in those 12 patients and looked like typical MS lesions caused by white matter myelin loss. Diagnosis of MCMS was only possible after death.

The findings, published online Aug. 21 in The Lancet Neurology, show that neuron loss and demyelination can occur independently in MS. This highlights the need for more sensitive MRI scans, according to the researchers.

“This study opens up a new arena in MS research. It is the first to provide pathological evidence that neuronal degeneration can occur without white matter myelin loss in the brains of patients with the disease,” said team leader Bruce Trapp. He is chair of the Lerner Research Institute department of neurosciences at the Cleveland Clinic.

“This information highlights the need for combination therapies to stop disability progression in MS,” Trapp said in a Cleveland Clinic news release.

Vascular Issues and Multiple Sclerosis Disability Progression – October 2018The October 2018 edition of HorizonsSCAN (provided by the Australian Multiple Sclerosis Network of Care) highlights 20 topics frequently discussed across global MS consumer networks. A handy “catch up” check list. Subject matter includes:1. While a specific cause for MS is not known there

is an ever widening body of evidence regarding factors contributing to its prevalence and progression. A common denominator relates to their collective influence on endothelial (vascular) health.

2. Such factors (individually or in collaboration) include Sunshine, Distance from Equator, Ultra Violet (UV) exposure, Nitric oxide, Vitamin D, Nutrition, Exercise and other Blood Flow/blood vessel related irregularities/inflammation (genetic or acquired).

3. Also referenced is the latest news from the Australian CCSVI Reference Group that evidences the role of disturbed bloodflow in the development of many MS disabilities. Highlighted are serious concerns regarding barriers contributing to the ability of vulnerable consumers to readily access independent and unbiased medical guidance and information on this topic.

See http://www.msnetwork.org/bookmarks/NewsLINK.htm

Peter Sullivan and Kerri Cassidy, on behalf ofMultiple Sclerosis Network of Care, Australia

Chris Brown – Artist, Kapiti Coast

I was diagnosed with MS primary progressive 20 years ago when I had just turned 50 years old.

An MRI scan & a lumbar puncture confirmed my condition. I remember feeling really brassed off as research at that time, showed MS affected more female than male, were younger than I was then & predominantly lived in the northern hemisphere- so

why me? Like most MS sufferers, I really had no idea about the implications of this chronic condition. The neurologist I saw at the time, showed little or no empathy when confirming the diagnosis.

At that time I was a fit 50 still playing cricket, tennis, golf & a love of trout fishing & the outdoors. However, that all changed soon after diagnosis as my mobility began to deteriorate, fatigue became an issue to the extent that I could no longer participate in my favourite pastimes. Also frustrating was the fact that I had just established a new business in Kapiti. Fortunately, with the rapid change in technology, learning how to use a computer, google, websites, social media, I was able to develop an online business serving companies & organisations nationwide. I was able to run from my home- based office.

I sold my business about 18months ago. Like many people retiring, I was at a loose end. With MS progressing & limiting my activities, I decided to try my hand at art. Being an avid beach comber, I started driftwood carving, stone engraving & stone painting. I combined this with photography & design. To my surprise friends & relatives really seemed to like my creations. I enjoy being able to create & donate painted stones, unique & quirky artwork to friends, organisations & special events. I also enjoy doing custom work. If someone wants something special on a rock, I will make it.

To record my work, I set up an Instagram page. This has now put me in touch with the international rock painting community. I have 400+ followers from many countries. My Instagram page is - handpaintedrocks.

Most of these followers, like myself seek enjoyment from turning everyday objects into art, then sharing and inspiring others.

So if there is one thing that MS has taught me - don’t give up as life gets tougher -kick butt, appreciate what we have, & find ways to inspire others.

My Story“Redundant.” I didn’t quite believe the word I was hearing. After 24 busy years I needed to reflect on exactly what I was hearing. Seeing the disbelief on my face, my boss said to me “It’s up to you to find some jobs to put on your project list.”

Well, I checked with everyone but the response I got was more “We will keep you busy but we can’t think of anything off-hand.” I believe a lot of this was we had just done a major restructure at work. Everyone had different roles and they were creating their own project lists but weren’t sure what they doing themselves. Because the strong message I was receiving was that it was me they wanted to keep employed and not the work that needed doing, I had to make a decision—gracefully take redundancy so they could get rid of the position—or fight a slowly losing battle. It made me reflect on how it came to this.

When I first started at the Ministry of Education, I was one of two people doing my job in the Research Division. My work hours were eight hours a day but I did a few months with 12-hour days working extra hours for another Unit. Gradually, over the years, the Division changed and my role changed with it. With the advent of the web, my role become too large for one person and, indeed, at one stage I had two full time temps working under me. The position was eventually split into several positions. Some years later we went through a restructured and my position was moved to a nearby team. The funny thing was I did exactly the same work for the same people in the same way. I had lost a very inspirational, supportive boss for a one who had little idea of what I actually did …

Gradually people throughout the Ministry began learning to do formatting themselves. Indeed, I aided and abetted this process—part of my role actually involved teaching them how to achieve different effects. Recognising the probable effect on my own role I began the push into different areas. Unfortunately, what I was doing was not recognised and when we had another restructure the position was narrowed back down. Unfortunately, I was not onsite when I needed to be to defend my wider role. I worked from home four days a week and missed the fact an external company was looking at all the positions. They decided a desktop publisher should only do desktop publishing—nothing more. The Ministry had created another team to handle major releases and they had already taken over a major part of my work.

So, what impact did MS have on my job? I had gradually gone from an able-bodied person to

someone in a wheelchair. I shifted from five days in the office, to four days then two days and finally one day at the office. Luckily the Ministry fully supported me working from home. I was able to remote in from home via my computer so I had access to my programs, my files and anything else I needed. My typing speed has continued a downward trend right down to a one-handed effort. In a funny way, though, it helped me miss a lot of trouble with the trains running late regularly. I do miss the people though, both on the train and at work.

I learnt a lot through the Ministry over the years—some of it I continue to use on a daily basis. I will remember my time with the Ministry with fondness.

PUBLIC TOILETS WELLINGTON UPDATE

In the editorial in the last newsletter, I discussed the availability (or rather lack of) public toilets in inner city Wellington. On the MS Wellington Facebook Page you overwhelmingly voiced your displeasure about not only the sparse numbers of public toilets in the inner city, but also the lack of sign posts showing their whereabouts. I wrote to Wellington City Council asking for a comment on this. The council was not overly accessible and I had some difficulty getting a reply. When they finally replied, this was their response.

Hi Shona, I had a look at the signage yesterday and found that there were a number of street signs for the Grey St public toilets but we could definitely improve the Te Aro public toilet signage. The toilets are very clearly displayed in all the way finding as shown in the enclosed photos, these are located in many different locations around Cuba St, Willis St and Lambton Quay.

Thanks for your comments, it’s always good to be able to make improvements to our infrastructure when we can.

RECIPESAre you on the OMS diet and miss pastry? If so try this recipe. I make it regularly and thinks it’s great. Leftover curries and vegan chilli con carne make wonderful pies.

EASY VEGAN SPELT PIE CRUST Ingredients3 cups spelt flour 1 teaspoon sea salt1⁄2 cup soymilk (other non-dairy milk can be used)1⁄2 cup extra virgin olive oil

Directions1. In a food processor add the 3 cups of spelt flour and salt. Process for a minute to incorporate the flour and salt.2. Combine the non-dairy milk and oil in a cup and mix well. Then feed the milk-oil mixture through the feeding tube

in the food processor and into the flour mixture. The dough should be in large crumbles. At this point, stop the machine and feel the dough. It shouldn’t be sticky or dry, but a little oily and hold together well. Try not to handle the dough too much as it tends to toughen the dough.

3. Once you have the right consistency remove the dough crumbles onto a prepared surface to roll out your dough on large plastic sheet or waxed paper. Try to avoid using a floured surface as it will make the dough dry.

4. Shape the dough into a disc and cut it in half. Reshape the first piece of dough into a disc and roll it out. Wrap the dough around rolling pin then place it onto the pie pan and unroll. Position carefully but do not stretch it, it will shrink. Prick the sides and bottom of the bottom crust.

5. Fill the pie with the desired ingredients and roll out the second disc of dough and put it on top.6. Flute the edges with a fork and then trim the piecrust edges. Brush the pie with some of the non-dairy milk and

then make slits in the top crust to let out the steam.7. Bake according to the type of pie you are making.

I am still waiting for a response on my query relating to whether the council has any plans to increase the number of public toilets.

In the meantime – have you seen these really useful cards? They are available from Continence NZ free of charge. If you need to go but can’t find a public toilet, show this card to staff in a shop/cafe and they will let you use their staff toilet.

http://www.continence.org.nz/toiletcard/

IS MAINTAINING CONTINENCE AN ISSUE FOR YOU?

If so, check out their website www.continence.org.nz. It is a great website, with lots of really helpful advice. They have a discreet telephone helpline for any continence issues you may need advice you may need.

Continence Helpline 0800 650 659

If you are concerned with the environment and worried about using disposable continent products, look on line you will find a number of suppliers of washable underwear with built in pads. Continence NZ sell a white cotton brief for women that hold up to 350mls. A pack of 5 cost $25 + P.P. Buying washable underwear rather than disposable pads, may also be more cost effective.

MS IN THE NEWSWaikanae man gets MS treatment in Mexico By: Rosalie Willis

Now that it is entertaining season again, I thought I would put in Lucie William’s Strawberry Mousse cake again for those who missed it last time or have misplaced it. This is a real crowd pleaser for both those on the OMS diet, and those who are not. I use the filling recipe to make my own OMS friendly ice cream. You can experiment with a lot of different flavours. Use well drained tin fruit with spices and then put in an old plastic ice cream container in your freezer.

STRAWBERRY MOUSSE CAKEBASE2 tbsp oil1.5 cups ground almonds1 tbsp honey.Mix together in food processor with 1 tbsp water. Press into spring form tin with baking paper on base of tin. Bake 8 -10 mins in a moderate oven. Cool completely before adding filling.

FILLING2 egg whites at room temperature3/4 to 1 cup sugar (depending on taste)250 gm ripe berries (if using frozen berries defrost and drain first )1 tbsp lemon juice1 tsp vanillaBeat all ingredients together in cake mixer for 8 -10 mins until fluffy. Pour onto cold base. Cover with baking paper and freeze for a least 4 hours. Will keep in air tight container for up to one month.

After 20 years of coping with MS, Dave’s journey took a dramatic turn when he saw a feature on 60 Minutes about an Australian woman who had successfully had hematopoietic stem cell transplantation (HSCT).

So, last month, Dave travelled to Clinica Ruiz in Puebla, Mexico for Stem Cell treatment.

To read more go to: https://www.nzherald.co.nz/kapiti-news/nz/news/article.cfm?objectid=12127919

Gillie Fox – Massage TherapistI have been a Massage Therapist for 20 years and have recently had the privilege to be involved in doing seated massage sessions at the Upper Hutt & Aotea MS Support groups. I have really enjoyed being able to offer massage therapy at these sessions and meeting many inspirational people affected by MS.

I have obtained Diploma’s in Sports and Remedial Massage and hold Certificate’s in Pregnancy Massage, Shiatsu & Reiki. My style of massage is a combination of the techniques I have studied over

Ali and Dave Drury after returning from Dave's treatment in Mexico.

Waikanae resident Dave Drury knew something was wrong when he couldn’t feel the water around him while swimming in Lake Taupo on a Christmas holiday back in 1994. Shortly after the unusual experience swimming, Dave found himself with double vision, unable to see properly, leading to a trip to his GP and more tests at Wellington Hospital. It was soon confirmed that at 26 Dave had multiple sclerosis (MS). “I was told by my GP that I would likely be in a wheelchair within five years.

The MS started affecting his strength, ability to walk easily, his short-term memory and his ability to easily find the words he wanted to say. Despite his debilitating condition Dave never allowed MS get him down.

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.

Annual Street Collection 2019Dates are now comfirmed 15 – 21 September 2019

Put it in the diary – further details in the New Year

Calling All Writers …Do you have a poem in your bottom drawer that you have written but have never shown anyone? Do you have a short story that is still in your head and you just need a reason to write it down? Whether it is about MS, or just what you are thinking or feeling right now. It would be wonderful if you would be prepared to share with others. Please email me shona@mswellington.org. I thought it would be fun if we could put all of these works together and produce a small book from the members of Wellington MS society. Are you keen?

Notice board – Products and ServicesInformative Websites on MSwww.msrc.co.nzwww.msra.org.auwww.msology.caovercomingms.orgmsdietforwomen.comhealthline.com/msmsnetwork.orgnationalmssciety.orgactivemsers.orgwww.msforkids.org.au

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

the past 20 years. I have provided massage therapy within Chiropractic and Osteopathic clinics and at various Natural Therapy Centres here in NZ and Australia. I now base my massage business from home in Titahi Bay.

Massage can help with some MS symptoms and the potential benefits will vary from one person to another. Some symptoms that might improve with massage are; pain, fatigue, spasticity, stress, anxiety and depression. Massage also increases circulation, increases flexibility, reduces muscle stiffness and promotes relaxation. I believe communication is essential in providing a quality massage and everyone is assessed and treated in accordance to their unique symptom presentation. I ask for feedback throughout the massage to ensure my client is comfortable.

Massage Therapy can have a fundamental effect on both the body and mind. For those affected by MS, I am offering a 15% discount to encourage you to try massage for natural pain relief and stress reduction. I can be contacted for massage appointments through my website, www.gilliefoxmassagetherapist.gettimely.com. It is recommended to receive consent from your Doctor before receiving massage treatment.

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

Can’t get out? You can shop online!Supermarkets: online shopping and delivery New World - www.ichopnewworld.co.nzCountdown – http://shop.countdown.co.nzVitamins & Supplements:www.healthpost.co.nzwww.multiplesupplements.com

On behalf of your committee and our staff we would like to extend best wishes to you all for the holiday season. Good health to you all and if travelling please keep safe.