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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. 

Why I came up with my own event to support MS-UK

Posted on: November 14 2019

Andy Fiore blog pic.jpgI 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!

Giving my all (including my hair!) to MS-UK

Posted on: November 13 2019

Cheque 2.JPGDanny 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 lucy@ms-uk.org.

Travelling with a Carer: What are your options?

Posted on: November 05 2019

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.

Medication

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.

Insurance

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.

Fundraiser of the Month - Trekking the Thames for MS-UK

Posted on: October 23 2019

In this guest blog our October Fundraiser of the Month, Dan Young, tells us about how he raised an amazing £870 for MS-UK by walking the length of the River Thames this summer...

On 12 August, I set off to walk the length of the River Thames from the source in Kemble, Gloucester to the Thames Barrier.

When planning to do the walk, I decided to do it in memory of my Gran who had passed away after living with multiple sclerosis (MS) and as such, chose to raise money for MS-UK.

The route is 184 miles mainly following the Thames Path and at about 16 miles a day, I expected it take 12 days of walking through the summer heat. However, the British weather did not fail to disappoint. The first week poured with rain and in the second week, the temperature rose to 30C at its peak.Swans in the countryside in the River Thames

The weather made it harder than it already was. The long walks without seeing anyone were tough. I could walk 10 miles in the Oxfordshire countryside with only cows for company so when I finally saw another person I instantly wanted to talk to them!

Speaking of animals, they can be stubborn when they want to be. I had a number of situations with cows and sheep refusing to move out of my way, which left a dip in the Thames my only option at times. They were mostly harmless though and it was nice to roam through the fields and hills in the countryside and enjoy the long walks.

The scenery changed as I approached Reading and towards Central London. It was quite a relief to start walking on actual paths rather than cuttings in the grass as my feet started to feel every lump and bump in my path.

As I got into Central London, I soon turned into a tourist, walking past the Houses of Parliament and crossing the river to walk past the almighty Shard.

The end stretch from Tower Bridge to the Thames Barrier was the toughest! At this point, there were only 10 miles left but my feet were not in the best state. The area around the O2 gives little shade apart from the reflection of the sun off the skyscrapers of Canary Wharf but I pushed through. I finished at the Thames Barrier, 11 days and four hours after starting and had raised an amazing £870!

I am absolutely thrilled that I’ve stepped forward (no pun intended) and done it!

I’ve already started to plan my next adventure but for now, I’ll put my feet up…

Has Dan inspired you? Get in touch with Lucy if you would like to take on a challenge to raise money to help people affected by MS. Email lucy@ms-uk.org or call 01206 226500. You can donate to Dan’s cause via his JustGiving page.

 

The hidden treasures found inside a charity pot!

Posted on: October 18 2019

G Podgorski.jpgOne of our Community Champions, Gwynfa Podgorski, reveals how rare coins found in MS-UK collection pots can raise more funds than their face value might suggest. As a Community Champion, Gwynfa hands out MS-UK collection pots to local shops and collects the funds for our charity.

Who would have thought a 50p coin with Jemima Puddleduck on it could earn £9 for MS-UK? 

Having read somewhere about certain coins being worth more than their face value I decided it was time to check my change. Having been a Community Champion for a few months now, counting money out of the MS-UK pots I have in local stores has become second nature. Much to my surprise, I have found several commemorative 50p coins in there. Battle of Hastings, any Olympics ones, Benjamin Britten, Peter Rabbit, Paddington Bear, basically any 50p coin which celebrates events over the years are all potentially worth more than their face value. Checking possible value on eBay (most sell for £1-£2) I decided Jemima could be worth rather more than 50p. Indeed, she has a new home with a buyer in Wales and after paying fees to eBay, PayPal and Postage, MS-UK has an extra £9 instead of the 50p coin someone kindly put in the pot. When I find any foreign coins in a pot I take them to my local Scope Charity shop who collect them and sell them on when they have enough.

If any of you find similar and would like to try to sell them for additional funds for MS-UK I am happy to help with advice on how to or even doing the selling.

To get in touch with Gwynfa or become a Community Champion contact lucy@ms-uk.org.

Guest blog: ‘Counselling made me feel cared for’

Posted on: October 10 2019

Julie.jpgIt is World Mental Health Day and in this guest blog, Julie tells us why she took years to come to terms with her diagnosis of MS and how MS-UK Counselling has helped her…

‘To this day I struggle to think about the day I was given the news of my diagnosis. Unfortunately, it was dealt with dreadfully. I was on my own and not prepared at all. The consultant showed me my MRI scan and quite bluntly said the only thing she could think was that it was MS. I could barely breathe but knew I had to try to listen so as not to miss any information. She asked me what I was doing later that afternoon and I replied that I was due to go on holiday with my husband and daughter. She said: ‘Have a good time and try not to think about it too much.’ I couldn't believe what I was hearing, the sheer insensitivity. It took me years to accept my diagnosis and to learn to accept it.’

My diagnosis

‘I first noticed something was wrong around 2009 whilst on a charity walk. After around 40 minutes my right foot felt wobbly and slapped the ground. I didn't take much notice and for the next few years, nothing changed much until one day when I was meeting a friend in town. I parked a way out and by the time I got to the centre my right leg really ached and I couldn't control my foot. I made an appointment with my GP who couldn't find anything much but referred me for physiotherapy. Physio had no effect and when I described the symptoms of weakness, a tickling sensation and pins and needles I was referred for an MRI of my spine. This came back as normal but the consultant decided I should have further imaging of my head and neck and it was this scan that showed the lesions.’

Counselling

‘One day, my MS nurse pointed out that every year I bring up the bad experience I had when I was diagnosed, and maybe I should consider some counselling

‘I had no reservations about accepting help and found it a relief to talk to my counsellor. My first session was comforting and I felt listened to and cared for. I felt I mattered. 

‘The service has helped immensely. I have discovered I am actually stronger than I thought and have learned coping mechanisms for the times that are tricky. 

‘I would say to anybody struggling emotionally not to wait as I did and to seek help. It is available, and any good GP will help, or you can self-refer. The good thing about the MS-UK Counselling service is that the people have knowledge of the disease which makes a huge difference. 

‘I have also found exercise and meditation hugely beneficial in helping with anxiety.’

About MS-UK Counselling 

MS-UK Counselling is confidential and open to anyone living with multiple sclerosis. MS-UK counsellors are registered or accredited with the British Association for Counselling and Psychotherapy (BACP) with knowledge of MS and its impact on mental wellbeing. MS-UK is a BACP organisational member and our number is 275169.

Register online today or call us on 01206 226500 to find out more.

Guest blog: ‘Someone who is independent, who doesn’t know me but just wants to support and help …’

Posted on: October 10 2019

Adam.jpgAs part of our series of blogs today for World Mental Health day, Adam tells us about his first counselling session with MS-UK and how he felt supported to open up to someone who was completely removed from his experiences of living with multiple sclerosis…

‘I was first diagnosed with multiple sclerosis (MS) in March 2018 after one episode of symptoms. After I was told the news I was initially in a state of shock and just remember my wife bursting onto tears. I didn’t want to see or speak to anybody and I just couldn’t believe what was happening.

‘I have four children and all I could think of was them. I had a million questions in my head. How would I look after them? Would they end up looking after me?

‘The biggest feelings were ones of guilt and helplessness. I felt like the diagnosis meant my life was pretty much over and I would be a burden to those I am closest to. The feelings of helplessness were due to the lack of information and the unpredictability of the disease. Everything is a ‘maybe’ as each person is different so it’s a difficult diagnosis to understand and explain to others.

‘I found the information booklets produced by MS-UK and the MS Trust a great way of not only explaining the condition to friends and family but also for me to understand the condition and that the things I was feeling were normal.

Counselling

‘I saw a tweet from MS-UK which mentioned the counselling service and I thought to myself that it couldn’t hurt to try. The idea of counselling did have an appeal.

‘I feel lucky as I have a great support network but it’s hard sometimes when you do want to talk about MS but don’t want the guilt of burdening someone close to you. I did have reservations, mainly because it was a new experience and that unnatural feeling that comes from sharing things with a stranger. Fear of being judged came into it as well, although I quickly realised this was not something to worry about.

‘The first session left me feeling so positive. It was just so nice to have someone really listening. Someone who is independent, who doesn’t know me but just wants to support and help.

‘When we went through the initial checklist of things I may be struggling with, I did have a realisation that some of them were affecting me more than I thought. You do wonder how talking through things will actually help and this is perhaps the biggest reservation, but after just one session I absolutely understood how I could benefit from the service.

‘Counselling has helped me really think about my needs and gave me the opportunity to be reflective in my thoughts about how I interact with people, what I enjoy doing and how to feel positive about the future.

‘This service also helped me feel empowered to talk through some of the anxieties I was feeling living with MS. It really did feel like a journey and I do think about decisions and choices in a different and more positive manner.

‘I have definitely got better at recognising the things I’m proud of now, no matter how small. Using the MS-UK counselling service has made me realise that sometimes the simplest achievements can be proud moments to celebrate.’

About MS-UK Counselling 

MS-UK Counselling is confidential and open to anyone living with multiple sclerosis. MS-UK counsellors are registered or accredited with the British Association for Counselling and Psychotherapy (BACP) with knowledge of MS and its impact on mental wellbeing. MS-UK is a BACP organisational member and our number is 275169.

Register online today or call us on 01206 226500 to find out more.

Appointment number three of the MS-STAT2 trial

Posted on: September 30 2019

Cathy Howard 2_0.pngCathy Howard updates us on the next stage of the statins trial

I was up early again, which was just as well because parking was an absolute nightmare at the station! When we got to UCL Queens Square Institute of Neurology my appointment hadn’t been logged on their computer, so John and I had to wait for about an hour and a half to allow for my records to be released and my prescription to be authorised and filled at the pharmacy. We consoled ourselves with lunch and coffee at a local Italian restaurant.

Once the appointment resumed the lovely nurse Sarah looked after me again. She took the remainder of my original prescribed statin/placebo and replaced it with 2 new bottles and a six-month diary. She took blood and my blood pressure, and Dr Tom Williams noted some headaches and nausea I’d experienced during the first month. He also checked my lungs and heart. As long as these blood tests are ok, I can start to take two tablets per day increasing from one. I was able to collect a CD-Rom with my MRI scan on. So excited as it’s been a long time since I last had one done.

As long as my GP is happy, I can have my next lot of blood tests, at the end of November or the start of December at my local surgery. A few days afterwards I’ll get a phone call at home from one of the research team to ask me a few questions. I’ll let you know how it all goes.

 

Baseline testing day on the MS-STAT2 trial

Posted on: September 06 2019

Cathy Howard 2_0.pngMSer Cathy Howard updates us on the next stage of the statins trial

I was up with the lark again and even earlier than my last appointment! I got to UCL Queens Square Institute of Neurology almost an hour early, but I’d much rather be early than late.

A lovely nurse called Sarah took us through to the same area we were in last time and got me my second coffee of the day. She also gave me a Baseline worksheet with questions about how my MS currently affects me physically and mentally.

Dr Nevin John explained the day’s process, went through reams of paperwork with me and I signed five more informed consent forms for sub-studies. Don’t think of the trees!

Then the tests began. The Dr who administered those was very thorough and put me through a battery of sight, memory and manual dexterity tests, as well as a comprehensive neurological test. Records were taken after each part of each test.

I completed another walking test with a mobile phone with the MSteps app attached to my arm.

I had six lots of blood taken by another lovely nurse and a cannula inserted for contrast dye to be given part way through the lengthy MRI scan. I have some anxiety issues with MRIs so my GP kindly prescribed me diazepam as a sedative.

The last part of my day was 45 minutes of MRI scans. I estimate I had about 15 separate scans of varying durations. I was asked if I’d like some music whilst in the scanner, and I thought – well, I was an 80s teenager, so Madonna would be perfect. Although I couldn’t hear a lot of it whilst the bangs, clicks and dings were going on, when there were quieter periods, I was Vogueing (in my head) and being a strutting Material Girl! The technician who completed the scans will let me have a copy of the scan at my next appointment. Yay! It means I’ll be able to discuss it with my neurologist Dr Giles Elrington next time I see him. I haven’t had an MRI since my diagnosis, so I’m quite excited about that.

I was given my statin/placebo with a diary to keep updated. One tablet a night for a month. My next appointment is on 24 September. Bring it on!

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