Living with MS > Our People

Bleak to Bright - By Madeline Robinson

Reflections on the Mana Retreat, June 2007 - Anonymous

Going to the Gym Gets Me Going - By Linda Boughman

Bleak to Bright

Looking back now I can say 1995 was the year my life took an “interesting turn”. At the time however, I thought I was on a slippery slope towards my grave.

The experts say that stress has a great deal to do with the symptoms of MS and my life was certainly stress packed. I was a solo mother living with my three young children, working in a sales position which was commission only income and had just watched my father slowly loose his grip on life over a period of months. Each item was one of high value on the stress meter of life. Combined together it was enough to dish me up, what we now know was, my first full blown episode of MS.

Gradually over a period of weeks I started noticing my legs were not co-operating with my mind. I had this exhausted, aching body that wouldn’t snap out of it and I had just so much to do! I was getting so frustrated. I went to my doctor and said “I need a tonic and by the way I have lost the feeling in both my feet”. He was mystified and took a wait and see approach. Next day I was back saying “Today I have lost all feeling up to my knees”. Now his response was to get me to see the neurological specialist at the hospital as soon as possible. Next day I woke up and realized I was in trouble when I could hardly move. A large dose of intravenous anti inflammatory drugs got me mobile again. Receiving the same treatment as MS patients gave me the first inclination that this was in fact possibly what I had too. The future looked bleak.

The diagnosis of remitting and relapsing MS was finally made in 2000. The journey has been a mixture of frustrations as well as gratitude, a mixture of symptoms as well as treatments, a mixture of lows as well as highs.

So fast forward to here and now in 2009 and the reason I am putting this story in writing…

I would love you to have an appreciation of the support that the MS Society of Auckland & the North Shore provides to people who live with MS, their caregivers and families. This includes practical and emotional support. Since my diagnosis I have used their services. At various times I have benefited from MS field officer visits, I have participated in MS water walking classes, joined in on MS Society gatherings, made use of the MS library service and formed some wonderful friendships which have come about through the MS Society. You need to know that the MS Society makes a real difference in the lives of so many in so many ways.

The biggest gift the MS Society has given me personally has been the gift of hope. By giving people living with MS information on our condition, the management of it and the understanding of the latest research I personally have a much more positive outlook than I had previously!

Through their recommended readings, especially the books of Roy Swank (I read just after diagnosis) and George Jelinek (reading his book and attending his presentation organized by the Society in 2002), I now choose the very best fuel for my MS body and mind. What is the best thing about staying with the Jelinek recommendations? Increased energy levels and fewer symptoms!

MS Auckland Region has offered me a new way of life. I have been conscientious in taking up every self-help opportunity they have offered and now cope with full time work, something I could never have contemplated being able to cope again with at the time of diagnosis in 2000. I treat myself to a monthly reflexology therapy, attend a monthly MS coffee support group, do weekly yoga classes, daily mediations and follow the Jelinek diet. Now I take less medication than previously, see my doctor less frequently and my outlook is much brighter!

Inspire: Be Inspired

By Joni Bentham

“Triathlons?” you ask. “Why not something a little less physically demanding?” I get that a lot, “if only they knew it all” I smirk to myself. I have MS and still not many people know – a notion which I still find incredible because when I was diagnosed in March 2006 I was totally consumed by it, this monster making home in my brain tissue. I was scared and afraid, had nightmares about my future. What would my friends and colleagues think when they saw an episode? Above all, how could I face a life without my passion – sport, in particular, triathlons?

I am lucky to be blessed with a mild form of Multiple Sclerosis (remitting-relapsing). Symptoms began on my OE 2-3 years before I was diagnosed. I had trouble focusing and bouts of poor coordination in my legs. These symptoms all disappeared after 4 or so months and it was put down to a virus. Phew. But in 2006, back home and training for the Coast to Coast multi-sport event, I experienced more weird symptoms: lack of co-ordination in my legs, bad balance, blurry vision, numbness in my limbs and torso… With my medical background, I took my self-diagnosis to the Neurologist hoping he’d tell me to stop being a paranoid Radiographer. But the MRI scan confirmed it.

I figured there were 2 ways in which I could deal with it:

The negative – why me: I could feel sorry for myself, quit all physical activity and endurance exploits.
The positive – be thankful: people deal with worse, a lot worse. Be grateful for all that I have, make the most of every single day. Be strong.

With a bit of help from my fantastic family and close friends, and a book or two, I decided Option Two was the only option. No question, it was easy.

I completed the Coast to Coast (the team section) – ran the 33km sector over Arthur’s Pass and cycled the 70km leg in just over 2hrs (tail wind!). It was the most grueling and physically challenging feat.

There were tears and frustration, having to stop every so often for fear of losing control of my legs – not ideal in the rugged terrain of rocky river beds, boulders and swift river crossings! But it was my challenge! I achieved it, it was an awesome experience, and I’ll never forget the lessons it taught me.

After that I knew that if this ‘monster’ was here to stay, it would have a fight on its hands. With a positive attitude and determination, this thing was not going to stop me doing what I love, or change Me.

Now my symptoms are always changing but they usually involve my lower limbs, co-ordination and sensation deficiencies, and balance and vision problems. However, I do not focus on what’s wrong, I focus on what’s right and I am grateful for these aspects. I am sure things are better now than back then. I am careful to listen to my body; I eat healthy (no special diet, just very low saturated fats, I eat red meat, milk, the odd sweet, no cheese, and I take Omega 3 supplements) and I avoid over-training as I know my limits.

I compete in mainly sprint distance triathlons (750m swim, 20km cycle, 5km run) and occasionally an Olympic distance. This summer I got into ocean swimming and was placed third in my age group in the Sovereign national series.

There is so much uncertainty about this condition and although staying strong mentally can be the toughest thing, I believe in positive thinking – a powerful tool and it’s at our disposal, for free, no one can take it away.

Focus on the positive, be grateful (i.e. support networks etc), be inspired and you will be empowered to reach your goals and dreams no matter how difficult they may seem.

“Whatever the mind can conceive, it can achieve”. – N Clement Stone

Reflections on the Mana Retreat, June 2007

Anonymous

Professor George Jelinek’s insights into the treatment of MS have been hugely instrumental in my journey to wellness. I would like to relate some of the essentials of his teachings, a little about the Mana Retreat experience and my current state of health three months on.

After a five year search for a way of alleviating my symptoms, the MS Auckland Mana Retreat provided a fresh approach and more clarity than anything I had done before. At the heart of it was Jelinek’s “all or nothing” philosophy on diet. Backed up by extensive research, I believe it holds the key not only to stemming further progression of the disease, but to also reversing it.

Admittedly, I was reluctant initially and did not want to give up my 1-2 red meat meals a week, nor my cows’ milk yoghurt, and worst of all chocolate. But when it came to giving up those few remaining sources of dairy and saturated fat, I found it unbelievably easy. It’s amazing how many delicious things you can eat that are not composed of saturated fat. I was relieved to discover that cocoa was okay and decided to bake more and to substitute dairy products and egg yolks.

Whether we like it or not, there is indisputable evidence that saturated fat is the most significant problem for people with MS. Professor Roy Laver Swank who carried out clinical tests for 35 years says in his book, ‘The MS Diet Book. A low-fat diet for the treatment of MS’ that patients with MS have “a remarkable degree of sensitivity to or intolerance for saturated animal fats,” and that in the first year of a low-fat diet red meat should not be eaten.

Jelinek takes this a step further and actually makes it easier for us by eliminating saturated fat from our diet. Of course there are small quantities of it in many foods such as fish and nuts and olive oil, but according to Jelinek no more should be added to our diet. Refer to his book, ‘Taking Control of Multiple Sclerosis’ for more information.

The essential MS diet according to Jelinek involves:

No saturated fat
No dairy products
Omega 3 supplements
Sunshine and Vitamin D
Vitamin B supplements
Meditation - 30 minutes per day or 2 lots of 20 minutes
Exercise - 30 minutes per day

This very basic outline cannot even be termed the bare bones of the Mana Retreat experience. You really had to be there yourself and attend the variety of workshops given by George Jelinek and Sandra Neate and Paul and Maia Bedson, who work at the Gawler Foundation. The workshops included topics such as ‘Medications in MS’, ‘Healthy Emotions’ and ‘Forgiveness’ to name a few. We were also entertained by Mark Laurent and Brenda Liddiard, an acoustic oriented musical duo and further enlightened by an inspirational speaker. I strongly recommend that anyone with MS attend a retreat of this kind whether it is at the Gawler Foundation or here in New Zealand as you can rest assured it will be a life changing event.

Three months on, I not only feel good, I feel fantastic! Before it was an effort for me to walk to the corner shop, now I can walk 30-40 minutes without needing to take a rest. The problems I used to face with fatigue have definitely improved. Somebody said to me once that MS is a “degenerative disease.” I prefer to think of it as regenerative. Having MS teaches you how to live you life in a much healthier way.

To conclude, I would like to convey the sense of fulfilment that I experienced sharing such an intimate part of my life with a group of people facing similar difficulties. I was pleased to discover that many of those who attended also preferred not to be open about their condition in their everyday lives but enjoyed the opportunity of being able to share their stories with others. There were overwhelming feelings of support from the group as a whole and strong bonds were formed. I would like to wish everybody well on their journey to good health.

Going to the Gym Gets Me Going

By Linda Boughman

MS Auckland joining with local gyms and forming a partnership is one of the best moves the society could make in my book! The benefits of exercise with weight training for a person with MS are many. Improvement in overall strength, balance, walking, fatigue, psychological well being and socialisation have been seen for me as a result of joining West Wave gym in Henderson last year after the article appeared in the MS Society newsletter.

My personal trainer, educated in MS and trained in the type of exercises most beneficial for those with MS (thanks to Liz Binns, AUT Physiotherapy Educator) does a fantastic job of explaining, adapting and monitoring my personally tailored exercise program. There is an acceptance of sharing my physiotherapy exercises with the personal trainer, who incorporates these into my gym routine.

Besides the obvious benefit of increased strength for walking, the socialisation, the people interaction is great! The gym has become a place for me to be me, doing what I am able do with encouragement and coaching from others who have an understanding of MS functioning levels. When my trainer, or one of the other trainers comments on the visible improvement they see in me, the well being gauge shoots straight to the top! Several regular members of the gym (a friendly bunch) comment the same way in passing by me in the gym. Final word on MS Auckland Society having a partnership with local gyms is... Yes, cool, good on ya!