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.
I was first diagnosed with multiple sclerosis (MS) in 2010 and was pretty much directed to use the services of the MS Society by the NHS Neurology department. Their help was very much appreciated at the time as MS was all new for me.
Now, although I still have a lot of respect for the work and the people of the MS Society, I find that I want a more active life than their local members seemed to have. I wanted ‘To live life to the full’, which is pretty much MS-UK’s slogan - as I was about to find out.
I discovered MS-UK by chance while searching the web for more information on MS and as luck would have it, their head office just happened to be down the road at the Hythe in Colchester - another big plus in their favour from my point of view as transport could become a problem in the future.
The MS-UK premises boasts a fully-equipped wellness centre for people with MS and other neurological conditions, and I began using the specialist facilities (mainly exercise bikes) under the guidance of their wellness coach, Allan Pearson. The exercise helps prevent muscle problems that would otherwise occur with lack of use, as well as helping my brain to keep active.
Another benefit of attending the MS-UK gym is that it also promotes friendship with fellow MSers, although each person’s symptoms are unique to them.
The camaraderie with other MSers is further enhanced with regular events, coffee mornings, 10-pin bowling and other get-togethers, as well as with special opportunities, such as marathons, sponsored skydiving and aeroplane wing-walking!
There always seems to be something happening somewhere with an MS-UK logo on it as a way to raise money for the charity.
Additionally, MS-UK has a helpline staffed by fully qualified people, with direct experience of MS, offering strictly confidential on any subject over the phone.
MS-UK also hosts information sessions on different topics and invites companies and charities offering specific help on that topic, recently Age Concern and Mobility came in to offer information.
Fundraising for MS-UK’
With all this wealth of MS-related help practically on my doorstep, what’s not going to make me want to raise a few pounds to help MS-UK, which also gives me some purpose in life and is very important to me.
Up until my diagnosis with MS, I was an active bass guitarist in a few bands playing anything from Jazz to Blues to Pop. None of these bands you’ll have heard of but it was a passion of mine for over 25 years. This is what started the making of Virtuosity in aid of MS-UK.
Although I can no longer play the guitar myself, the one thing that MS will never take away from me is my passion for quality music. Promoting live music events wouldn’t be too time-constrained either, so I could take my time to set up live performances and make use of my experience and contacts in the industry.
Could this be the fundraising opportunity that I was looking for? I had to try it to find out.
In 2017, I decided to set about organising my first live music event and called it ‘Virtuosity in aid of MS-UK’ as it featured three of the best musicians that I’d ever played with: Chris Allard, Ramon Goose and Daryl Kellie. It took place at Colchester Arts Centre, whose director has a disabled daughter and therefore some empathy with the MS-UK cause. I donated all the profits to MS-UK as a thank you for their services to me in the past.
The following year, I discovered an Australian musician on social media called Geoff Achison and was pleased to find out that he had a tour of the UK lined up with some session musicians from West London that I had been fortunate enough to jam with in the past. I had no hesitation in booking Geoff Achison and the Souldiggers, with support from the very talented and once local solo blues guitarist Martin McNeill. As this was likely to be a major gig, I also got the audio-visual department at Colchester Institute involved to come and make a video of the performance, which they were pleased to do as part of their project work.
While keeping my eyes open for exciting new acts, at the beginning of 2019, I came across the incredible voice of a young lady named Helen Connelly.
‘That’s someone I’ve got to promote in another Virtuosity event’ - I thought!
The only problem was that Helen’s regular guitarist wasn’t available for the date I had in mind at Wivenhoe Bowls Club (a new local venue that I also wanted to promote) but, not to be put off, I asked my old friend and jazz guitarist Chris Allard if he would step in to help out. To complete the evening’s entertainment, I enlisted the services of Polly Haynes, a local singer/songwriter and a fantastic performer in her own right.
Lessons learned and overall satisfaction
It would be fair to say that I ran into a few problems along the way that I’ve needed help from MS-UK and others with. Everyone has to learn from their experience though, and each day with MS is a new experience to learn from.
The overall satisfaction that I’ve had from putting on these events and finally accepting the MS-UK certificate of fundraising for all my hard work has made it all well worth the effort.
Unfortunately, one of my MS symptoms was paraesthesia of the lower arms and hands, taking away the use of my fingers for manual work and stopping me playing the guitar completely. This was accompanied by other MS symptoms of chronic fatigue, poor memory and cognitive problems, which meant that whatever I did would take a lot longer to achieve than for a normal person, but I did it!
Andy raised £158.32 from his latest Virtuosity event for MS-UK – Thank you, Andy!
Danny Holland, one of our clients at our wellness centre, Josephs Court, has helped MS-UK year on year since 2016 with a sponsored head and beard shave to raise money to help people affected by multiple sclerosis (MS).
‘This is something simple I can do to, at the very least, to help raise money for my charity.’
‘I myself have MS so I can understand how much pain and discomfort others are going through. That's why I want to help them by raising money for MS-UK and by doing so, it gives me a great feeling of happiness.’
‘I participate in the hair and beard shaving challenge to raise money and I also have a very close friend of mine who helps in collecting the money.’
Danny raised £112.38 this year, bringing his grand total raised so far up to £396.72! This money helps us to run Josephs Court, which supports people with MS to maintain their wellbeing and live independently.
If you would like to raise money for MS-UK our dedicated fundraising team are always on hand to help. We have had people raise money in lots of different ways, from sitting in a tub of baked beans to skydiving! Simply call Lucy on 01206 226500 or email firstname.lastname@example.org.
It’s National Stress Awareness Day, but we all know it’s important to take stock of your mental health not just today, but every day.
Stress affects us all at some point and avoiding it completely can be nearly impossible. But taking steps to reduce it and manage your response to it, can be extremely beneficial. Research has shown that it can even help prevent new disease activity in people with multiple sclerosis (MS).
So if you’re craving a little more relaxation, read on.
Research has shown that meditation and yoga can reduce stress and cause changes in the brain that allow more stress resilience. Meditation slows the heartbeat and calms the mind, leaving you in a relaxed state. You can find free guided meditations online. Try www.freemindfulness.org/download
The role of exercise in helping reduce stress is well proven. One study found that exercise can not only help you manage it in the present, but it can also act as a buffer to protect you from future effects, too.
Personal trainer Dom Thorpe specialises in exercise for people with MS and offers an ‘MS Warrior’ programme online. Visit www.dt-training.co.uk/ms-warrior-programme/
Pile your plate high with prebiotics, because there is evidence that these feed the good bacteria in your gut, and improve the physiological impact of stress. Prebiotics are fibres found in foods such as chicory, Jerusalem artichokes, raw garlic, leeks and onions. When this fibre is digested by beneficial gut bacteria, the microbes release byproducts which researchers think influence brain function.
Prebiotics were also found to increase the amount of rapid-eye-movement (REM) sleep that happens. REM sleep is believed to be critical for promoting recovery from stress, with research showing that those who get more REM sleep after a traumatic event are less likely to experience post-traumatic stress disorder.
Finally, when you’re in need of a snack, you could do a lot worse than to reach for a handful of walnuts. A study found these tasty nuts and their oil may help prepare the body to deal with stress. Other studies have shown omega 3 fatty acids, such as the ones found in walnuts, can reduce bad cholesterol and inflammation markers in the body.
For more information about living with multiple sclerosis, subscribe to New Pathways magazine, your MS magazine of choice.
Travelling with a Carer: What are your options?
Are the dreary winter weather and dark evenings making you dream of sunnier climes? The world is your oyster, says writer Ella Hendrix.
Travelling or going on holiday is one of the delights of life. But, just because you need extra help, it doesn’t mean that you can’t enjoy getting away to see and experiencing new things.
It might seem difficult, but, with a bit of careful planning, anything’s possible. Although going away on your own could be an option, if you make use of a carer in your everyday life, there is also the possibility of travelling with them. There are some CQC regulated care companies that make travelling with your live-in carer possible. With this in mind, you might be able to go to places that you otherwise wouldn’t, as your carer understands your needs and limits.
Trains, planes and automobiles…
As long as you’re planning on travelling by (fairly) conventional means, you shouldn’t have a problem in most parts of the world. International flights, flights within Europe, long-distance planes, and ships should all be well equipped for everyone, including people who have limited mobility, but it is important that if you do have mobility issues you make a travel agent, airline or booking company aware of it.
You might have more difficulty if you are going to a third world country, as they often will not have the same infrastructure as we do here. However, there are usually ways around this, so speak to a booking agent to see that they can do. Make sure that you tell them that you’re travelling with a carer as this might make things easier.
One big worry for many people, when they go away, is what to do about their medication. If you are travelling with a carer you can ask them to look after your medication but there are still some things that need to be thought about in advance.
Make sure that you carry a doctor’s note and a copy of your prescription so that you can show that you are meant to have it on you, and so that you can get hold of replacements should the worse happen
Make a note of your medicine’s generic name as well as the brand. Many countries use different brands to us here in the UK
Take your medication in its packaging to leave no doubt about what it is.
Remember if it is a liquid to carry it in a clear plastic bag if you are flying
If your medication requires refrigeration you should take it in a cool bag with ice packs that last until you get to where you are staying. If you don’t have your own fridge where you are staying, speak to the management of the place to ask if you can use theirs
Carry medication in your hand luggage
Holidays in the UK
Holliday villages, trendy hostels, hotel spas and well-established hotels are good options. They are usually well equipped for people with health issues and have staff who know exactly what to do to make your stay an enjoyable one. These places are usually fully fitted with wheelchair access, have rooms which are suitable for less mobile people or those who need extra help, and are dedicated to ensuring that everybody has a good time.
It is always a good idea to get travel insurance, especially if you are going abroad. This is especially important if you have a pre-existing medical condition or specialist equipment that you want to take with you.
If you’re older, specialist insurance for the over 50s can be useful as it is more tailored. You should also remember that, whilst the UK is still in the EU, a European Health Insurance Card (EHIC) can be used alongside (but not replace) your travel insurance. This means that you can get access to state-provided healthcare if you are in an EU country.
There are many benefits to gain from going away, and with a carer, you can find the whole experience enjoyable and not too stressful – just as it should be.
So, how has this year gone for you? Have you been extra good and put smiles on everyone’s faces, or have you been more on the naughty side? We want to know if you think you are on Father Christmas’s Naughty or Nice list this year and give you a chance to donate to celebrate your niceness or redeem yourself for being naughty with a donation to MS-UK! Or do you know someone who is worthy of the Nice or Naughty list that you could nominate? It’s up to you!
Whether you donate £1 or £1,000, we hope that you get a lovely warm feeling from knowing that you are helping us to support people affected by multiple sclerosis (MS). Our charity is hard at work improving the lives of people with MS through counselling, our helpline, our wellness centre Josephs Court and through working to increase understanding of MS. MS-UK does not accept any statutory or pharmaceutical funding so that we can stay independent and offer completely unbiased information and support. This means every penny donated really will make a difference to our work.
It’s time to decide – naughty or nice? Tell us how you or someone you would like to nominate has been this year and with a donation, however small or large, their name will be on the MS-UK Nice List this Christmas. Just visit our JustGiving page at www.justgiving.com/campaign/NaughtyorNice
Thank you for everything you do to support us – you make all of our work possible!