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Mr Baum goes to Westminster

Posted on: November 14 2019

Blogger Martin Baum was invited to an event at the House of Commons recently to launch a campaign. Here is his story of his experience...

In an age where blogging is a symbol of 21st century communication, the aim is as much for a blog to be read as it is to be written. As a multiple sclerosis (MS) blogger for various MS-related organisations I am no exception as I continue to try to engage with a loyal and growing readership.

As a writer I enjoy what I do very much but just like having MS it’s a lonely existence. However, sometimes, the unexpected does happen. I recently received an invitation from a charity called Overcoming MS (OMS) to attend a reception they were hosting at the House of Commons.

It was to launch a new campaign video giving everyone living with MS hope of recovery and it was not something I was going to pass up. The reception was sponsored by Stephen Lloyd MP and held in the Strangers Dining Room.

The person behind the promise of living a life free from MS was Professor George Jelinek, an Australian who devised the OMS seven-step recovery program which has enabled him to remain symptom free for 20 years. In truth, however, I was sceptical. Ever since beta interferons failed to sustain the promise of being the cure, I have become naturally wary of anything being promoted as such.

On reading more about Professor Jelinek’s regime prior to my trip to Westminster, it occurred to me my own lifestyle was already accommodating much of what he was advocating. The seven-step program is about following a strict curriculum of diet, sun, vitamin D, exercise, meditation, mindfulness, approved modifying medication, helping to prevent family members from getting MS, and changing a lifestyle for a healthier one.

Whilst I am not vegan I eat very little meat, preferring fish instead. I meditate regularly for ten minutes a day, I exercise as much as I am able to and enjoy the benefits of mindfulness. Most of all, I’ve been changing my lifestyle for a healthier one for several years which means, should I ever want to fully engage with the program, I’m only a couple of steps shy. 

That afternoon I met many MSers sharing a happy disposition to be living with the condition because their symptoms were no longer an issue. Many claimed their lesions had been repelled and that they were now leading happier MS-free lives as a result of following OMS.

Throughout the afternoon I mingled with many inspirational people. Just like any of us, neither MPs nor nobility are immune from being touched by MS because they have family and friends affected by it. Stephen Lloyd’s reason for being there was because he had a constituent who had MS who also follows the OMS approach. That was reason enough for him to sponsor the event.

As the afternoon ended and I parted from some truly inspiring people, I was left feeling that the OMS seven-step recovery program had already succeeded in helping many people. But then my thoughts turned to those who weren’t but might have benefited if they had.

Having MS is a game of patience. We bide our time in what often feels like an isolated existence, waiting for a more traditional breakthrough in the quest to find a cure for the condition. I’m left feeling that more MSers should at least try something like the OMS approach that’s as near to organic as it gets. 

Fundraiser of the month - Gemma took on a marathon for mum...

Posted on: June 20 2019

Gemma image for blog.pngEvery month we share the story of one of our fantastic #TeamPurple fundraisers. This month, Gemma Burke tells us why she decided to take on the Virgin Money London Marathon earlier this year...

In 2013 my lovely mother got diagnosed with multiple sclerosis (MS). When we got the news of course we were devastated, not knowing much about the condition apart from the fact it was “incurable “ through medication and put her in a lot of pain, we just all did what we could to support her but for years I have felt helpless. She decided not to tell anyone but her close friends and family of the condition she was living with...why you ask?

My mum is one of the most strong, independent, driven and successful women you will ever come across. In 1999 she was awarded the Ernst & Young trophy winning Young Entrepreneur of the Year. From 1992 - 2012 she owned a very successful business expanding world wide in over twenty countries and for years she was on the panel of the DSA and was well respected in the industry she was in. Sadly, I believe because of all of this she put pressure on herself to portray this strong business women, I think she thought people would take pity on her or think she couldn’t get the job done if she came clean that she had MS. So instead she suffered in silence, for a few years she was CEO of a large network marketing business which was an extremely high pressured job and to get her through the pain day to day she would take morphine based pills which again is something none of her colleagues knew about.

In 2017 my mother found herself heading up Europe for one of the largest essential oils company in the world doTERRA, here again she would be working 70 hour weeks, another high pressured role but this time she would be taking over 100 flights a year around Europe. Anyone that has MS will know that one of the biggest struggles is tiredness, so it won’t come as a shock to you when I tell you that she was exhausted. But this time something was different, as she was now part of this essential oil business she discovered natural medicine and in time found the perfect essential oils to support her immune system and pain relief and now to this day is morphine free.

In June 2018, even though my mum was at her healthiest, her strongest, pain free and our “happy mum”, I still felt I needed to do something to help her and others with MS and also families that have lost loved ones through MS. I took the plunge and decided to apply to run the Virgin Money London Marathon 2019 to raise money for MS-UK. They help people and families through some of the darkest times. This journey has been incredible - I have not just been able to raise over £2,000 but I have also learnt so much about myself too, I feel so proud to be a part of it all and to have run for such a good cause with an amazing charity.

Last month my mum told me that I had given her the strength to tell the world what she had been hiding for years, she told her colleagues and thousands of people who work alongside her, friends she had not seen for years that she has had MS for over 6 years. People where stunned, some sad, some happy because her story had also helped them, but most of all no one took pity on her!

So my 'WHY' is my mum, I ran for her, for the strength she has shown, for never giving up, for still pursuing her career even though at times it was nearly impossible to get out of bed let alone run a business, for now helping so many other people with MS find a natural solution that works with them, for having the strength to tell everyone that she will fight and lastly for being the best mum I could wish for!

Visit Gemma's fundraising page

Want to take on the marathon in 2020?

Applications are now open for MS-UK #TeamPurple places in the Virgin Money London Marathon 2020!

Apply today

Guest blog: “I feel like I’m getting one over on my MS”

Posted on: April 25 2019

As part of MS Awareness Week, in this guest blog Nigel tells us all about the social side of exercising and how it has helped him...

Photo of Nigel, MS-UK clientI have been living with multiple sclerosis (MS) for thirty-five years. In 2014 I noticed that walking was becoming more difficult and my MS nurse recommended that I contacted Josephs Court, MS-UK’s wellness centre in Colchester, Essex. I attended twice a week to exercise and became a founding member of their Steering Group. Before I was diagnosed with MS, I exercised every weekday walking for 10-15 minutes to the office where I worked in London. At lunchtime I would occasionally go for a 30 minute walk if the weather was kind, and this felt like it was a sufficient form of exercise. However I was unfortunately diagnosed with MS, but nevertheless I continued exercising in the same way for another 13 years until I eventually changed jobs in 1996. By then I commuted to Basildon by car – therefore my exercise regime came to an end.

But now, I visit Josephs Court two mornings a week, for 2-3 hours each time, and use most of the equipment available. I’ve also increased my exercise since the arrival of the latest university students, as one of them has given me some rigorous exercises using the parallel bars.

Now I feel that doing gentle exercise gives me a feeling of “getting one over on my MS” – it isn’t going to stop me from doing something that I enjoy, and there is a social aspect too. We are all suffering with the same disease label yet we don’t talk about it, we just enjoy one another’s company. The social aspect means I now have someone else to talk to, and shows that I needed something to relieve the boredom of not working, as I spent three years applying for jobs with no luck.

Finally, I thoroughly enjoying working with the student physiotherapist Becca, as she has brought new ways of exercising to me. I also find volunteering for MS-UK therapeutic – it is another reason for existing and gives me purpose.

Find out more about exercise in our Choices booklet (PDF document)

Find out more about MS Awareness Week

Your MS magazine of choice hot off the press!

Posted on: April 03 2019

Issue 114 front cover_1.jpgIssue 114 of New Pathways magazine is out now. In this jam-packed edition, we take a look at the recent changes that could affect those of you who take CBD oil, on page 12. We also ask ourselves “Am I having a relapse?” Whether you’re newly diagnosed or have been living with MS for years, there will come a time when you will ask yourself this question, to find out more turn to page 39.

Page 21 offers some helpful advice to those who have found themselves caring for a friend or loved one and don’t know where to start when it comes to finding support.

Louise Willis MS-UK Counsellor talks about managing fatigue and how spoon theory can help you manage and explain it to others on page 28.

MSer and feature writer Ian Cook investigates if magnets can help multiple sclerosis in Cook’s Report Revisited on page 19.

Mary Wilson, #5 Para-Badminton player in the world, reveals her hopes of representing Team GB in Tokyo 2020 Paralympics on page 24, and discover how music therapy could help your MS on page 23.

In addition, don’t forget to read all the latest news and real life stories from MSers living life to the full and why not give our tasty free recipe a try!

Enjoy reading!

About New Pathways

New Pathways magazine is a truly community led publication written by people with MS for people with MS. Each issue offers a variety of information on drugs, complementary therapies and symptom management, plus all the latest news and research and your amazing real life stories.

To subscribe, visit www.ms-uk.org/NewPathways, or call 0800 783 0518. Audio, plain text and digital versions of the magazine are available on request, simply call 01206 226500 and let us know your requirements.

Top 5 tips to ensure you’re buying quality CBD products

Posted on: February 12 2019

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In our latest guest blog Henry Vicenty, CEO of cannabidiol (CBD) oil producer Endoca, walks us through his top 5 tips to buying quality CBD products for managing your multiple sclerosis (MS).

 

1. Does the company have publically accessible, easy to understand lab reports?

Companies such as Endoca selling quality products will be proud of their lab reports, and will want their customers and the general public to have easy access to information regarding what is in their products. Do a quick search of the company website, or reach out to their customer services team who should be able to point you in the right direction. You want to see cannabinoids listed, as well as terpenes and evidence of absent chemicals and pesticides. 

2. Are the products organic and whole plant?

If the products are certified organic, you will see the logo on the website. Some companies will grow organically but may not have a certification, which isn’t ideal but even without certification, a quick glance over their lab reports should show the testing for, and subsequently negative levels of a variety of chemicals or toxins. 

Research and anecdotal reports support the claim that whole plant CBD extracts are more therapeutically potent than isolated CBD extracts alone. Make sure the lab reports of your products show terpene and other trace cannabinoid levels, otherwise you may be buying an isolated CBD product, which means the company is using only the CBD molecule in a carrier oil and no other beneficial plant molecules. 

3. Is the CBD amount of the product clearly labelled and verifiable?

As the industry is yet to be standardised, bottle sizes and CBD levels are all dependant on the company, so it’s hard to truly know if the product you’re using is good value for money. Endoca have created this CBD calculator, which helps you work out the monetary amount per milligram of CBD, which is important when trying to decide between products. 

4. Are there clear quality standards in place? 

Without clear quality standards there is no guarantee of safety in the product you are purchasing so make sure you ask the company for proof of the quality standards they have in place. Ask if the products are Good Manufacturing Practice (GMP) certified (when products are of pharmaceutical quality) and for any other certifications they hold that show their product is safe for consumption.

5. Is their website content clear and informative and do they have many online reviews?

As CBD is a new industry for many people, there is an abundance of misinformation online, including information that you can find on many CBD company websites. Unfortunately, it’s very easy to buy CBD in bulk and rebrand it as your own, so if the company you’re buying from provides limited information, or is not clear in giving you all the tools you need to make an informed decision or purchase, steer clear. Also, finding online sources of product reviews is vital to hearing about the experiences of others using the same products.

You can read more about cannabis in our Cannabis and MS Choices leaflet online.

Read the Cannabis and MS Choices Leaflet online

Listen... 3 stress-busting podcasts to help you unclutter your mind

Posted on: November 07 2018

Everyone experiences stress in one way or another. It can affect you both physically and mentally, making you feel anxious and impatient. But stress doesn't have to dominate your daily routine.

To mark Stress Awareness Day 2018, we are giving you the opportunity to learn how to focus your mind with a series of stress-busting podcasts hosted by mindfulness coach Zoe Flint. Each step-by-step guide is designed to give you the tools you need to de-clutter your thoughts, focus on the present, and ultimately reduce your stress levels.

Want to get involved in the conversation? You can follow all the talk about Stress Awareness Day by searching for and using the hashtag #StressAwarenessDay on Twitter and Facebook.

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Brrrrr…Our 10 top tips for dealing with the cold

Posted on: November 06 2018

The MS-UK Helpline shares some top tips for dealing with the wintry weather...Winter top tips graphic image

It feels a little that people with multiple sclerosis (MS) are stuck between a rock and hard place when it comes to the weather. After the extremely hot summer we’ve just experienced, many people had issues with the heat, and now winter is just around the corner bringing problems and anxieties of its own.

MS symptoms can be exacerbated as the temperature drops. It is not known exactly why the cold has a negative effect on people with MS symptoms. Some of the symptoms that can be exacerbated by the cold weather are:

  • Increased stiffness and issues with spasticity
  • Higher fatigue levels
  • Increased and unpredictable bladder urgency
  • A worsening of perceived pain
  • Problems with sensory issues, particularly in the extremities

One additional issue may be the shorter days and not being exposed to as much direct sunlight, therefore not getting as much natural vitamin D as in summer months. The lack of sunlight, the shortening of the days and the difficulties getting out and about can also be contributing factors towards negative mental health with potentially worsening anxiety and depression.

Like many other aspects of living with MS, a little planning and forethought can go a long way when coping with activities in the winter.

Top tips...

  1. If your spasticity and stiffness increases in the cold, it is worth speaking to your MS team. There may be medications that you can take or if you are already using drugs the clinicians may suggest changes to dosage. There are also things you can do at home to help with stiffness, like stretching exercises, yoga or Pilates
  2. Wear layers. The thermal insulation of layers can make sure your core stays warm. We suggest choosing easy to remove clothes, as if you begin to overheated you can shed a layer or two.
  3. Make sure all your equipment and aids are well serviced and ready for the winter. Whether that is a car, a mobility scooter or walking aids, it is a good idea to get them checked out. This may involve lubricating moving parts, checking tyre pressures and ensuring brakes are up to the job. Some people even choose to switch their walking sticks over for Nordic walking poles or something similar with a wider ground surface area. You can also buy ‘ice tips’ to customise your existing walking aid
  4. Drink plenty of hot drinks. Tea, coffee, hot chocolate or whichever is your drink of choice can help you stay warm from the inside, warming your core quickly. It can also help keep your fingers and hands warm whilst you cradle your favourite mug
  5. Keeping your hands and feet warm is really important. Some people with MS have sensory issues or also have a condition called Raynaud's phenomenon, in which the extremities (particularly the fingers and toes) are affected by the cold. Fingers and toes can become bluish looking and be very painful. It is a good idea to plan ahead and get some good thermal socks and gloves and consider keeping your warm socks on even whilst at home. You can also purchase hand warmers of various kinds from outdoor stores
  6. Consider increasing your uptake of vitamin D and make the most of what little sunshine there is. Try to go outside as close to midday as you can and expose as much of your skin as is possible (given the cold!) to the sun. Not only will this help your vitamin D levels but being outside and enjoying the autumnal colours or crisp Jack Frost touched plants will likely be good for your mental health too. If you feel you need to increase your Vitamin D supplements during the winter it is worth reading our Choices leaflet on the subject and speaking to your MS team
  7. Plan for adverse weather. If you have a care package you can speak with your care manager to ensure you have an understanding of any kind of contingencies or emergency plans that are in place in case of adverse weather conditions. It is a good idea to contact your local Adult Social Care department to find out if there are any special plans in place for extreme weather in your area. If you have a family carer or have caring responsibilities yourself, it would be a good idea to get an updated ‘carers emergency plan’ (usually part of a carers assessment)
  8. If you rely on meal on wheels or home delivered meals it is a good idea to do some contingency planning for the possibility that a delivery will not get through. It is always a good idea to have some tins of soup or other non-perishable foods in the cupboards. If you have room in your freezer it is worth making sure there are a few easy meals stored away in there too
  9. Be mindful of colds and your health. If you feel you are becoming poorly, speak to your pharmacist or GP as early intervention is best for managing health. Remember that you are entitled to the flu vaccine from the NHS. You can get this at your GP practice or your local pharmacist
  10. The UK government have produced a leaflet called ‘Keep warm, keep well’ specifically aimed at older and disabled people which is full of useful information about the winter fuel payment, the cold weather payment, the Energy Company Obligation (ECO), the warm home discount scheme and other sources of financial help. The Energy Saving Trust has good advice on how to lower your bills and make your property more energy efficient. They can also advise on grants and schemes available around the UK. They have a helpline you can call on 0300 123 1234

If you want to chat about any aspects of living with multiple sclerosis, the MS-UK Helpline team are here to help. Just call us on 0800 783 0518, email us or use our live web chat service to get in touch.

New Pathways sneak peak: mindfulness, being a carer with MS, mobility and more...

Posted on: October 20 2018

Front cover image of New PathwaysHello,

I am thrilled to share a sneak peak into the latest issue of New Pathways magazine, which is out now!

Our cover star this issue is MSer and HR Specialist Rebecca Armstrong, who discusses being your own boss and taking a step into self-employment on page 16. 

On page 24-25, wellness coach and Director of Work.Live.Thrive Zoe Flint discusses how relaxation can help boost your immune and central nervous systems. This feature all about mindfulness for MS shares Zoe's insights and her top 5 things to get your started. 

Also, MSer and Feature Writer Ian Cook reveals his first-hand experience of becoming a carer. Ian says, 'It may sound strange to say this but I believe being disabled is, in many ways, the perfect qualification to care for another disabled person.' Read the full article on page 12, and don't forget to check out his 'revisited' article on page 42 all about Shopmobility. 

Fats have once again been dominating the news of late, so we asked MSer and Nutritional Science Researcher Sharon Peck to reveal the truth and explain what we really need to know on page 19. We also take a look at the natural remedies lurking in the back of your kitchen cupboard that could help relieve MS symptoms on page 18.

If you would like to see something specific in New Pathways please email me and let me know your thoughts or feedback. 

Enjoy reading!

Sarah-Jane

Editor, New Pathways

Top 5 books about multiple sclerosis

Posted on: August 09 2018

Hello,

As today is Book Lovers Day, I couldn't resist asking staff at MS-UK what their favourite books are about multiple sclerosis (MS).

So, here's the top 5...

  1. The Multiple Sclerosis Diet Book: A low-fat diet treatment of MS by Roy Laver Swank MD, PHD and Barbara Brewer Dugan
  2. Managing Multiple Sclerosis Naturally: A self-help guide to living with MS by Judy Graham
  3. Overcoming Multiple Sclerosis: The evidence-based 7 step recovery program by George Jelinek
  4. The Wahls Protocol: A Radical New Way to Treat All Chronic Autoimmune Conditions Using Paleo Principles by Terry Wahls
  5. Awkward Bitch: My life with MS by Marlo Donato Parmelee

Check out Amazon for the books if you want to!

Happy Book Lovers Day everyone,

Laura

Marketing Manager, MS-UK

 

 

 

New Pathways issue 110 - The Editor's Letter

Posted on: August 01 2018

Hello!Issue 110 Front Cover of New Pathways

This issue of New Pathways magazine is jam packed full of a variety of news, features and real life stories. Start your read by catching up on all the latest developments in MS on pages 4-10. Then why not discover nine anti-inflammatory foods that could benefit your diet and MS on page 34.

Next we take a look at how a condition that predominantly affects women, actually impacts men on page 12. And on pages 30 and 32 MSer and feature writer Ian Cook revisits Access to Work and gives electric wheelchairs a spin.

Stem cells research and personal stories are still dominating the news, so we thought we would produce an update on this ever popular treatment option on page 24.

Also in this issue, MSer and HR Specialist Rebecca Armstrong explains how to get the best out of occupational health on page 16, we take a look at the therapeutic benefits of horse therapy on page 18, and Rosalind Barton reveals the highlights of her surprisingly accessible trip to Singapore.

Subscribe today to read all this and much more!

Sarah-Jane

Editor, New Pathways