Overcoming MS retreat, July 2013

Hello! the madness of the summer is over (which I thoroughly enjoyed!) and at last I manage to blog about this amazing experience.

So in July, I attended the first UK retreat run by the Overcoming MS UK (OMS) organisation,  (now a registered UK charity), who allowed me to go so that I can hopefully help them to run workshops etc in the UK, to help people with MS understand the effects of diet and lifestyle modification on MS.george Jelinek et al, breakfast OMS meeting

From left to right, this is Linda Bloom, patron & founder of OMS UK, who has MS herself and is very well, Sandra Neate, Prof Jelinek’s wife, an emergency medicine consultant in Australia, Professor Jelinek, professor of emergency medicine and author & founder of Overcoming MS ( & very fit & well with MS), Gary McMahon , head of OMS UK, all round top bloke, with a business management background, but utterly committed to health, having helped his wife recover form serious illness using dietary & lifestyle measures, Dr Craig Hassed, an Australian GP and  medical  university lecturer, author & international speaker on mindfulness, and me.

What did I expect?

Well, I expected that I’d already know it all ( how arrogant!) …. I expected that I’d enjoy meeting the Professor and crew, but might shy away from too much socialising, not wanting to feel different as an MS nurse…. I expected I’d be bored in the evenings and took lots of work to do…. and that I might get a bit hungry on the fully vegan diet provided, and took a big loaf of bread for my bedroom… and I expected that 90% of the focus would be on diet & supplements, with a sliver of meditation thrown in for good measure….

What actually happened?

a) I didn’t know it all… & I’ll share my new understandings here,                                             b) I enjoyed meeting every person on the retreat, was inspired by the company of so many intelligent, stimulating individuals and couples who dare to think differently and think for themselves,  had a lot of fun, was never once bored, never did any work (!), and am actively staying in touch with the group via an email group because I want to!                     c) Was absolutely stuffed, because  the food was tasty, vibrant, delicious and really ‘stuck to your ribs’.                                                                                                                             d) I got my focus back through meditation, and realised how powerful the effects of even a boring daily grind of meditation that you don’t even want to do can be !!

for this, it helped having a little cell, with no TV or internet connection….

launde abbey

So, first impressions happened the evening before the retreat, when I went out for a meal with the OMS staff/trainers. Firstly, the Professor is seriously fit and healthy looking, and runs or swims daily more than I do in a week ( if not 2), and comes across as genuinely lovely, thoughtful, intelligent, educated, and kind person. He is obviously ably supported by his wife Sandra, who shares his qualities, diet & lifestyle, and took on the sessions about the structure & role of different fats.

Prof Jelinek & his wife Sandra

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

During the meal, in conversation, the Professor talked about how he would like to slow down his international work running the retreats ( he does already have his full time academic medical work), and I felt honoured to hear him relate this personal anecdote, with some emotion:

He said that he had recently experienced a relaxation of the drive to always be working to get his message out there, and that it had caused him to wonder and reflect. For some reason his age suddenly became very meaningful to him, but he couldn’t work out why — until he suddenly realised that he had now passed the age that his mother had been when she died, severely affected by MS (she took her own life). And so somehow, he had ‘made it’ , and proved to himself the value of the work he’s been doing all these years.

I’m not going to re-iterate all the points of the OMS approach here, as I’ve talked about it many times, and its all available for free on http://www.overcomingMS.org , there’s the books, and also a forum on the website where people can discuss points; I’m just going to go into some of the things I hadn’t quite nailed.

We sat in a circle around the outside of a large room, or on beanbags in the middle, and there were about 40 people. Most people had come with their partner, and some on their own. Teaching was very good quality, and we had lots of time to ask questions and discuss fine points.

prof jelinek teaching UK retreatHere’s the Prof teaching, and Linda in mid leap… she & Gary had organised and were running the show, she had her new baby in attendance, and during the week was constantly jumping up and physically running, fetching, carrying, leaping over boxes & beanbags, & looking radiant throughout.

Flax seed oil – in the most recent research carried out by OMS ,taking this trumped fish oil for having reduced disease activity. The best amount and way to take it is 2 dessert spoons drizzled over food ( or used to dip bread or in salad dressing) daily, and apparently, the best tasting is from http://www.flaxfarm.co.uk  I just got some, and can confirm, it looks like sunshine and tastes… nutty but fine. Going to see if I can get a discount for Bedford MS Therapy Centre….

Meditation

I’m no stranger to meditiation, having taken it up in my 20s, however, life had started getting on top of me, and when I attended the retreat, I was pretty stressed.

I was taken aback by the serious focus on meditation – every day, we started and finished the session with a half hour mindfulness meditation, led by Craig Hassed. I also did some of my meditation again in my room on a morning. It was hard! It is hard! But it is real – it has real, measurable mental and physical health benefits, and it’s worth doing every single day. By the end of the week I felt that I had met my real self again, and I was OK. Meditation  deserves a post of its own, which I’ll do some time, but for now, here’s some links to give a taste of the sort of thing we were doing. Scroll down to guided meditations, mindfulness meditation (1,2 or 3) with Craig Hassed.

http://www.calm.auckland.ac.nz/18.html 

It’s school run time!  but to stop this being delayed any further – TO BE CONTINUED!

MS Frontiers intro and OMS newsletter

I was proud to present this poster at the MS Frontiers conference – Fantastic findings re Flax seed oil – 49% less relapses in people with MS that took it, research by http://www.overcomingms.org just been accepted for publication.. Will post more info asap.

Also coming up – and important to know about if you have RRMS -Campath/alemtuzimab/lemtrada trials

and – interesting stuff from MS Frontiers conference

MS Nurse Miranda Olding presenting our poster at the MS Frontiers Conference

It has been a busy few weeks for Miranda Olding, MS Specialist Nurse, based at the MS Therapy Centre in Bedford. She was recently nominated by her patients for an award of ‘My MS Super Nurse, a competition run by the MS Trust. Click here to hear how Miranda describes her work with the MS Community.

With her holistic approach to patient care, she is a keen advocate of the OMS Recovery program and has represented us on a number of occasions, most recent of which was the MS Frontiers Conference at the Sofitel, Heathrow where she presented a poster on the current research work being undertaken by Professor Jelinek’s team at St. Vincent’s in Melbourne.

Photo: MS Specialist Nurse Miranda Olding presenting our research work in London

Recovering from Multiple Sclerosis: turning evidence into reality

Everyone knows about AMEX day by now, surely? Presented by Professor Jelinek and Dr Craig Hassed this day-long event will lay before you the recovery program and outline the evidence base that led Professor Jelinek to developing the program. The price includes all refreshments, a wonderful lunch and a copy of the book Overcoming Multiple Sclerosis: an evidence based guide to recovery to take home with you. The newly built AMEX Stadium, home of Brighton and Hove Albion Football Club is a wonderful venue with superb facilities. Ticket sales have been strong, and bookings have come in from as far afield as central Europe, but at the time of writing there are still some places left. Don’t leave it until the last minute. This event will not be repeated until the end of 2014 at the earliest. Tickets are obtainable from here

New OMS app for smartphones released!

The new OMS app for smartphones has been released. Download free from the App Store!

Our trusty team has been working away behind the scenes to bring you OMS on your smartphone.

Go to the App Store in iTunes or Google play if you have an android phone and use the keywords ‘overcoming multiple sclerosis’ and you will find the new OMS app, which you can download for free!

From podcasts at your fingertips, to recipes, and even a place to send your photos of the surprised expression of your neurologist when he sees how well you are doing! All there on the new OMS app….

Old posts: 2012: diet, supplements, Epstein Barr, detox, urine infections

2012

Supplements

The Therapy Centre is going to stock the supplements that I recommend most, at a discount of 15% off the RRP (which is fantastic news). So soon you will be able to buy Vitamin D3 5000 IUs, cold pressed flax seed oil 1000mg (Omega 3), and 2 varieties of an iron-free multi vitamin, mineral and nutrient supplement made from whole foods.  I got mixed up with a discount code previously, so if anyone used it and didn’t get the 20% discount, massive apologies, it went direct to the Centre, if you want to claim it back, see me!

Food

For people who’re eating food without saturated fat, but struggling with what to eat, I found a great website, www.fatfreevegan.com. Also, the OMS site is collecting more recipes that you can see when you log in. I too am collecting recipes, tips and ideas, so anyone out who has some good ones, please email or bring them in!

Hot topics

A hot topic for me this past year has been Epstein Barr (glandular  fever) virus and herpes virus (mainly herpes, cold sores and shingles in adults). Since I started asking people if they had these viruses, I’ve been shocked at how many MS people have one of these.  Recent research showing Epstein Barr still alive in MS lesions at post mortem, and    discussion around the fact that the virus lives on and may drive       inflammatory processes, got me wondering whether there could be a natural or herbal way of killing off the virus, and whether this would have any effect on the MS. So watch this space for the results of this latest     quest – natural viral detox!

Got a great tip the other day – did you know that the Kindle (£150 version) can read your books to you?  And for some people with    vision problems, the iPad is a revelation, so keep your eye on how technology can make life easier!

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 December 2011

As an MS Nurse, I’m always looking for the best advice to give to my clients about being and stayingwell…..  MS is a disease with a genetic component, but our environment – the food we eat, the climate,     exposure to various    viruses, and stress, – have an impact on activating or suppressing our genetic susceptibilities. I often talk with people about their lifestyle and diet, and   depending on what I find out, I may recommend that they look at the work of Terry Wahls,  Ashton       Embrey, Ann Boroch or Sawyer & Bachrach , or get an overview and understanding of the different considerations and approaches by reading Judy Graham’s book.

But at the moment, if I had to choose just one piece of advice to give to    people with MS  who want to know what they can do to help their health, it would be to go to the http://www.overcomingms.org/website, and immerse themselves in the evidence based information there.

George Jelinek is the author of the book and website ‘OvercomingMS’ . He  is a medical doctor, and professor of emergency medicine in Australia, whose mother had MS and became very disabled, and who was diagnosed himself in 1999. Since that time, he  invested a vast amount of time and energy into examining the research on the various dietary, nutritional and lifestyle factors that have a  documented effect on MS, found evidence of the profound difference they can make, put the recommendations into practice and stayed symptom and relapse free, and has put this together into a simple to follow approach.

The work that Professor Jelinek has done in compiling and explaining, in simple language, the research on dietary fats and vitamin D is      incredibly helpful, and the fact that it’s all in one place, on the web or in his book,

Overcoming MS, an Evidence Based Guide to Recovery’ means that the   information stays cohesive and doesn’t become overwhelming

The cornerstones of the OMS approach are:

Diet and supplements

· Omega-3 fatty acid: 20g /mls  a day of flaxseed oil or fish oil, or the equivalent amount of fish

· Optional B group vitamins or B12 supplement if needed

Meditation – 30 minutes daily

Vitamin D

Sunlight 15 minutes daily 3-5 times a week as close to all over as  practical

Vitamin D3 supplement of at least 5 000IU daily, adjusted to blood level

Aim to keep blood level of vitamin D high, that is between150-225nmol/L (may require up to 10 000IU daily)

Exercise  –   20-30 minutes around 5 times a week preferably outdoors

 Medication

·    In consultation with your doctor, if a wait and see approach is not

appropriate, take one of the disease-modifying drugs (many may not need

a drug, and drug selection should be carefully weighed against side effects)

·   Steroids for any acute relapse that is distressing

·   One of the more potent drugs if the disease is rapidly progressive

The down side to the evidence-based approach, is that if anything – be it a therapy, foodstuff, supplement, drug, or approach, has not been      researched, or not researched to an adequate standard, then it can’t be counted. The evidence based approach prevents us from wasting money or time on useless therapies, but as Carl Sagan, famous America

astronomer, writer and scientist, famously said, ‘absence of evidence is not evidence of absence’.   So I’m still happy to suggest a person, for   example, who has extreme fatigue, might try Terry Wahl’s green   smoothies, or that someone might try hyperbaric oxygen, or even some of the commonly used symptom management drugs ( for instance for muscle spasm and stiffness) which don’t necessarily have a body of      scientific evidence for effectiveness behind them, but are used due to the effects that people report.

Recently I was really excited to see a research paper from the Australian Journal ‘Quality in Primary Care’, following up people who attended an OMS retreat and took on the recommended dietary and lifestyle changes. This study showed ‘ongoing improvements in health related quality of life after an intensive lifestyle modification course’, over 2 ½ years, that ‘ could potentially make a significant difference to the lives of many people with this condition’, and ‘contribute to the growing body of evidence that health promotion programmes and non-drug therapies for MS     patients have a beneficial effect.’

We hope to get Professor Jelinek over to the UK for a retreat in summer 2013, but you don’t need to do a retreat to take on this approach –all the research and recommendations are outlined on the website and in his book. Recently I met up with Lisa, the moderator from the website, and  two English women who  have done the OMS retreat, follow its recommendations, and enjoy good  health, and introduced them to the MS Trust. Now they are going to be introducing the work  to the MS specialist practitioners at the annual MS Trust conference for healthcare professionals in November. The goal of this is to help to promote the work of OMS in the UK – so that everyone who gets diagnosed with MS has the chance to find out about it, research it for themselves, and make their own decision.

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spring 2011

 This month I am mainly focussing on Urinary tract Infections (UTIs),   because they can really set you back when you have MS, and Prevention is better than cure!One cause of UTIs   with MS is the bladder not emptying properly. Not being able to start passing urine,  feeling there’s some left afterwards, passing a fair amount again quite soon after, ‘urgency’ and UTIs  can all be signs of incomplete emptying. This needs to be identified by ultrasound scan, which is done during an assessment by the continence service. For    Bedfordshire, Melanie  runs a clinic here once a month, or for Beds and Northants you can be seen in a local clinic , or have a home visit. Speak to me, a nurse or your GP to be referred

Be prepared! Burning, cloudiness or unusual smelling urine are classic signs of a UTI, but you can also dipstick test your urine at home. Buy Multistix or Uristix which include Leukocytes and nitrites,.Also dipstick if you have a relapse, as UTIs can be symptom free. It’s a good idea to help your GP understand how a UTI can cause MS to flare up, and be ready to prescribe an antibiotic at the first sign of infection. Get a sample taken in too, and the antibiotic can be changed lagter if necessary.

If you use a catheter, either a permanent or intermittent type, this also can introduce a route for infection. Obviously scrupulous hygiene is a must. People who get recurrent infections can try having antibiotics for the three days around a catheter change, or may even need to use a daily low dose antibiotic. For intermittent catheters, the type can make a difference – it’s important to use something that you don’t have to touch the tip of at all, and there are a couple out now which have a protective ‘introducer’( Hollister ‘Vapro’ is one), so the tip does not even touch the outer part of the urethra. Talk to your continence adviser.

if you get a UTI.

Don’t take any chances – Get a prescription of antibiotics!  If you take a course, top up with probiotics during and afterwards to help protect your digestion and health. Always finish a prescribed course of antibiotics, as stopping early can cause      antibiotic resistant bugs.

Drink plenty of water and pee frequently. Begin as soon as you feel the first signs and symptoms. Doing this can actually flush the bacteria out and wash it away. Avoid alcohol, caffeine, fizzy drinks, spicy foods,  and bubble baths etc, which can worsen symptoms. Cut out sugar to help your immune system fight back.

The most common bug causing UTIs is E coli, which lives in the bowel, but can cause persistent problems once it enters the urinary tract. So – what else can you do to help get rid of RECURRENT UTIs, especially if antibiotics are not working?

You may want to consider using Colloidal Silver  – silver particles suspended in water, which is a natural antibiotic.  Go to http://www.ukcolloidalsilver.co.uk/

“Citricidal’ from Higher Nature is a safe, natural antibiotic you can try at home.

Cranberry helps to acidify urine, and may help stop the bacteria form sticking to the bladder walls. Concentrated tablet form is best.

Some people have found D-Mannose to be effective in the same way – this is a simple sugar that E coli tends to latch on to. It’s available online but is quite     expensive.

All these remedies can be taken both in a higher dose for infection, and at a low dose as a preventative.

Be aware:

· Some sexually transmitted diseases have symptoms similar to urinary tract infections. See a doctor if you suspect that you may have an STD.

· See a doctor if you have a fever, chills, pain in the flank area, nausea or vomiting – especially if the symptoms develop rapidly. Also see a doctor if symptoms do not improve after 24 hours of self-care, or if you are unable to urinate at all.

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December 2010

I hope everyone is reading the MS Resource Centre’s New Pathways (available to read at the MS Centre) at this exciting time in the world of MS treatments. The July/August edition updates us on the CCSVI debate, and lists all the places worldwide where you can be screened and treated. To learn more, I am attending the first International conference on CSSVI in Glasgow, in October, so I’ll be sure to report back.

The same New Pathways reports on a couple of fascinating small studies which fit in with this theory of poor circulation from the brain, and have worked for most of the people on the trial.

Inclined Bed Therapy

This involves raising the head of your bed by 6 inches. It’s certainly a lot cheaper than a private operation in Poland, as bed raisers, risers, or ‘elephant feet’ can be bought online for 12.99. Since CSSVI hit the headlines, this research has attracted fresh attention, and the author is carrying out a larger survey. You can get involved by going to www.thisisms.com/ftopicp-118378.html#118378

Update on Vitamin D

Thank you to the lady who came to let me know that she’s been feeling much better since she started on it. It is always good to get feedback; good or bad! D3 is still coming up as good, but newest research suggests it’s not just the vitamin D component that’s so important, it’s also the ultraviolet light, so more reasons to get outside as  much as possible. Had a good question regarding the vitamin D Should you take CALCIUM with it? I discussed this with the technical advisers at Nutri, who supply quality supplements to practitioners. Their view was YES, if you are on a dairy free diet, but not if not. Also, if you quote MSRC New Pathways when you make an order on the phone at      NutriCentre, you get 20% off.

My little break from clinic afforded me some reading time, and I’ve just finished ‘Healing Multiple Sclerosis’ by Ann Boroch. I’d recommend this to anyone who has taken lots of antibiotics in their life before    having MS, or has had recurrent yeast or fungal infections (like thrush or athlete’s foot) It’s main drive is about the association between chronic candida and MS; this isn’t a new theory, and most natural health    practitioners understand all about it. Getting rid of candida overgrowth is a long slog, but worth it if it applies to you, and I’m also happy to help anyone with this 3 pronged attack – kill yeast, don’t feed yeast, put good bacteria back! The author’s attitude to illness is a bit over the top at times, but the candida bit is good.

MS Centre Dietitian Bernice Chiswell adds

‘However, it should be born in mind that there is no scientific       evidence behind this. The diet is very restrictive and for the majority could prove more harmful than beneficial due to inadequate macro and micro nutrient intake’

Me:  The next book was ‘The MS Recovery diet’ The theory behind this is that food intolerances can initiate inflammatory reactions in the body, and it makes excellent and logical reading. It’s a similar approach to the Best Bet diet, but assumes that your intolerances are likely to be     individual,  explains how to find out, and has a large recipe selection to help get started. I recommend this to anyone with MS in the family.

Bernice Chiswell adds;

‘It should be born in mind that, although people with MS can have food intolerances, the only sure way to test for this is by food        exclusion and re introduction. Again, unnecessary exclusion can lead to unbalanced diets, plus be an added life burden to people who are already coping with disability and fatigue. The best bet diet is again not evidenced base.’

Me:  It’s a great month for books, too, as 3 new publications are out which all deserve reading – I have been waiting for ages for 2 of them:

Terry Wahls’ ‘Minding my mitochondria – How I Overcame       Secondary Progressive MS and Got Out of my Wheelchair’, which promises to be very scientific and convince everyone to eat loads of greens; ‘Overcoming Multiple Sclerosis; An Evidenced Guide To     Recovery’ by George Jelinek. Check out his approach on his website of the same name. Basically, super low fat Swank diet, a disease    modifying drug and meditation, and Judy Graham’s ‘Managing Multiple Sclerosis Naturally’. I haven’t read these yet but I will be doing and will report back!

Dietary approaches vary a bit, but some things remain constant – the less saturated fat, and the more brightly coloured veg & omega 3 fatty acids you eat, the more good you’ll be doing yourself.

Remember, if you’re taking something out of your diet, make sure you balance your nutritional needs. Our expert dietician, Bernice, can advise you.