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Guest blog: MS is just a sign of the times...

Posted on: February 25 2019

In this guest blog Martin Baum, a writer, author and satirist, explores accessibility measures introduced at UK supermarkets based on his own experiences of living with multiple sclerosis (MS)...Photo of Martin, guest blogger

2016 and 2017 was a momentous time for supermarkets here in the UK; ASDA, Sainsburys, Tesco, Waitrose and Morrisons announced they had removed the stigma of people with invisible illnesses from being called out for looking ‘normal’ when using their stores.

In an act of moving with the times, when the big five supermarkets specifically addressed the issue of hidden disabilities by displaying ‘not every disability is visible’ signs in their stores, I was greatly heartened to hear about this act of awareness. 

And not a moment too soon. After all, from a personal perspective having to validate my MS to complete strangers has at times been humiliating, particularly whenever I’ve found a disabled parking space. 

While not exactly a burning bush moment, by raising an awareness on their premises it was a positive step against discrimination. But then again, was it really something to celebrate or was it nothing more than a misguided publicity stunt?

Despite the desperate need for a parking space hidden disability awareness sign, shamefully I later discovered it was only Sainsburys who have displayed it beneath the wheelchair logo in their parking bays. As for the others, their nod towards helping people only extends as far as their accessible toilets.

Without wishing to sound ungrateful I’m at a loss to understand why both needs were not given equal consideration but then again, I have nothing to be grateful for.  None of us do. Yet given all the free PR and advertising, the cynic in me questions what kind of tokenism was deemed more acceptable by supermarket focus groups. 

If ASDA, Tesco, Waitrose and Morrisons can put up signs in their store toilets raising awareness of 'hidden disabilities' that doesn’t extend to parking, they clearly have no idea what going shopping is like for some with MS, faced with fear of confrontation outside on the superstore concourse.

Never more has supermarket lip service been so opportunist. They should be shamed, not celebrated, for their penny-pinching attempt for basking in gold-plated publicity. I can only assume they chose to do this because of cost. And yet all is not lost. Redemption is at their fingertips.

On Amazon, it’s possible to buy ‘not all disabilities are visible stickers’ to give away free to customers. The cost to them is less than £2 notwithstanding discount for a bulk order. 

Every little helps, as they say.

Get in touch with our helpline for support...

If you would like any information about accessibility or parking, please email our helpline with your questions.

 

We're accredited! The Workplace Wellbeing Charter...

Posted on: February 21 2019

Hello,

I am proud to let you know we have recently been accredited with the Workplace Wellbeing Charter, an award which recognises that we strive to make MS-UK a great place to work. Workplace Wellbeing logo

Completing the Workplace Wellbeing Charter is about more than just ticking boxes. It is making a real commitment to the health and wellbeing of our employees and the accreditation standard that is built on best practice, the latest research and business sense. As a national health charity, wellbeing is really important to us on so many levels and that includes the wellbeing of our staff and volunteers, so it means a lot to us to achieve this.

The Workplace Wellbeing Charter have made a short film about MS-UK, which you can now watch on our YouTube channel or below. 

Thank you to all the MS-UK staff who make working here such a positive experience!
Best wishes,

Sarah

Sarah Wright

General Manager

Guest blog: Glen and David’s story

Posted on: February 13 2019

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On Valentine’s Day, when love is all around us, Glen and David reflect on the strength of love in the face of multiple sclerosis (MS) in this guest blog. They tell us why a dear friend’s diagnosis of MS led them to take on the mighty marathon challenge...

After years trying to get a place for the Virgin Monday London Marathon, we have both secured a place to run the race on Sunday 28 April 2019, and we could not be more excited!

Our training is now underway and we have also joined the Prestwich Athletics Club to help us with our training. This year we are extremely proud to be supporting MS-UK who provide support to those awaiting a diagnosis for multiple sclerosis or for those already living with it. A charity like this is something that is very close to our hearts.

So why have we chosen this charity?

We moved onto our street in 2003 after taking a leap of faith in buying a new house in an area that we didn’t really know much about. Then, in 2004, a lovely young couple named Chris and Claire bought and moved into the house directly opposite to ours and right next door to our already great friends Helen and Jamie. We were all of similar ages and starting out with our grown up futures ahead of us. It wasn’t very long until we all struck up a great friendship and we started socialising together with dinner parties, drinks and silly karaoke discos!

We had formed an amazing triangle of trust between each couple and began making some truly brilliant memories. We were very lucky to have such fantastic neighbours that we could now call true friends. All of our futures were bright.

Soon after moving in, Chris and Claire got married. They had a beautiful wedding ceremony and celebrations in France. It was their perfect day and the start of their married bliss. Unfortunately, two weeks later their world was turned upside down and their future together took an unexpected turn after Claire was diagnosed as having multiple sclerosis. For a couple who were just starting out on their planned journey, their future was having to be rewritten.

Fast forward to 2019, and we can now look back and share what their journey has been so far…and how MS has affected Claire, Chris, their families and us as friends.

Anyone who is diagnosed with MS will soon learn that no two journeys are the same. The body is a wondrous thing, but how MS takes over it, is different for everyone. We had never had anyone close to us have MS, so this was all new to us all.

The text books say that MS is a chronic, typically progressive disease involving damage to the nerve cells in the brain and spinal cord. How was this diagnosis of Claire’s going to manifest itself? We have now seen first-hand that this disease can be debilitating. A bright, fit and healthy young lady with a fantastic future as a school teacher slowly had the carpet pulled from under her feet by the effects of MS taking over her body. The past 10 years have been a rollercoaster for Claire and Chris and everyone around them.

No matter how much fight you put up, the fatigue and progressive failing limbs can bring the strongest of people down. With that comes the black depressive days when you realise that your independence is ebbing away, you feel isolated and being a proud person is a blocker on accepting the support you may eventually need.

We have witnessed Claire’s battle with MS and her battle with herself. The ups and downs, highs and lows all followed. The pain, tiredness, frustration, sadness and steely determination not to be beaten. The intense pressure on both Claire and

Chris would have been a significant test on any relationship. Both have had to adapt to a life that neither of them planned for or ever wanted. Their love and strength for each other has been incredible.

Huge decisions had to be made on what their new future could be. Family and friends also had to adapt their lives to be able to offer love and support when needed and to take into account Claire’s capabilities, ensuring she was not being excluded. To watch your wife, daughter, sister or friend battle with something that you cannot physically help them with is cruel. How do you react? What can you ask or say? When is it appropriate to step in? No-one can teach you these things but you have to stay strong for that person and just wait until they are ready to let you in. Even in writing this piece we sought approval from Claire as she is still a very private person and contains her situation within those people very close to her.

Eventually realising their limits, Claire and Chris had to find another single level house where her mobility was not as exasperated. MS was preventing Claire to live a normal life by taking away her ability to be fully mobile. It was a very sad day for us all when they left their home opposite us to move into a house they had to choose because of Claire’s condition. Fortunately, they didn’t have to go too far, so we have maintained our fantastic friendships and memory making which we all do with joy!

Through receiving fantastic support from MS specialists and from the care services, Claire and Chris are now living much happier within the confines of what MS has done to her mobility. They have received some amazing treatment, adapted their home, lifestyle and accepted care that has been put in place to support them both. Whilst Claire is physically restricted, she is now embracing her life and extracting everything she possibly can with a beautiful smile on her face. Our triangle of trust is now stronger than ever, and the support network has expanded, with even more very special friends joining the fundraising team. Go #TeamPurple!

Since the times Claire was first diagnosed, there has been huge progress made on the support people can get from having an early diagnosis, improved medications and treatments and more research being done.

This is where MS-UK come into their own. The work they do is helping many people in the same situation as Claire and Chris. It is an amazing charity which does great things.

We are now looking to support them to raise awareness and make a difference to the amazing work that they do via our fundraising. We have a £2,000 target and need your help to reach it!

Many thanks for your support!

Glen & David xx

Visit Glen and David's JustGiving page

Fundraiser of the month - Grace Catchpole

Posted on: February 13 2019

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This month, our fundraising star is Grace Catchpole who took to the stage with her university sketch group in aid of MS-UK to honour the memory of her mother (pictured above). Here's her story of show night and a special delivery that brought her to tears...

In September 2018 I lost my mother to multiple sclerosis (MS). She was first diagnosed over 20 years ago and throughout that time was an inspiration to many people. I know it’s a cliché, but I don’t think it is possible to fight harder or continue to find the joy in life in the way she did. She taught me to always make the most out of everything I did and to never give up, no matter what the obstacles, and to always keep a sense of humour about everything.

In light of this I knew I wanted to do something to support those with MS. Great sporting feats were out of the question for me, as merely the thought of doing a marathon or triathlon makes me feel ill, and I would be the first to admit I am not in the shape to even think about attempting one. Then the idea hit me. I’d recently been at a university society training day where they’d spoken to us about the idea of adopting a charity for the year. Although I am not in charge of my university drama society, I am running the sketch group. I spoke to my second in command, the president of the society, and finally the rest of the sketch group and was given the green light: our little medical school sketch group was adopting MS-UK as our charity for the year.

My family’s connection with MS-UK goes back many years. My dad ran the London Marathon for MSRC and MS-UK numerous times, something I have always been in awe of. So, when I decided that I wanted to raise money for an MS charity, MS-UK was the first place I looked to.

From the moment I decided to make contact I knew I’d made the right decision. I was put in touch with Lucy who phoned me and we had a long chat about what I wanted to do, and why I had chosen the charity and the cause. Knowing that I had such wonderful support from the charity helped no end throughout the organisation process, and the good luck wishes via email and the Facebook page gave me and the sketch group wonderful boosts going into our first show.

To anyone looking to fundraise for MS-UK I would recommend getting in touch with their fundraising team as soon as you can! The extra support can work wonders and it was through that initial chat with Lucy that I came up with the idea to have all of our front of house team in MS-UK t-shirts for the show, helping promote what we were raising money for!

The first chance for our group to raise money for MS-UK came with our annual sketch show in December. This is a one-night only show aimed at other students from the medical school and has been a huge success in past years, although this is the first time it has been performed for charity. The first thing that needed to be done was to look at the numbers – how much of the proceeds from the show could we afford to give to charity and still be able to fund our activity for the rest of the year? We decided to charge £1 extra for tickets which would go to MS-UK and then fit as many collection buckets into the venue as possible and rely on the generosity of medical students.

When it came to organise the event, I was at a distinct advantage. I was running a well-established event that has been running for five years, so already knew I had an audience that was willing to turn up, but the challenge was how to get them to put money in buckets. The answer came from my genius flatmate, who runs front of house for our shows. We would offer face-painting to anyone who put some money in – this tactic meant we almost doubled the money we made from ticket sales, and meant in addition we had a fabulous looking audience!

I would also like to use this space to thank the incredible alumni of our little group. On the day of the show I received an envelope, which arrived by special delivery, with strict instructions not open it until 6pm that day. At 6pm, just after doing the pre-show thankyous to my wonderful team, I opened it to discover a wonderful letter and £70 donation to MS-UK from some of our alumni, triggering unashamed tearfulness from me and an outpouring of love from the rest of the cast. After the show was over I have also been contacted by other alumni asking where they can donate money in a show of love and support I find myself overwhelmed by.

When I was first contacted by Lucy about being fundraiser of the month she spoke about the show and also about money that had been raised in my mum’s name from other areas. Both my uncle putting together a carol singing group which raised money around Oxford and the university hockey and football clubs running a student union event for MS-UK (both clubs are headed up by friends of my sister). I cannot take credit for these fundraising efforts but there is one common denominator across them all. My mother.
It was very flattering to be nominated as fundraiser of the month, however I don’t know if this recognition truly belongs to me. The way I see it all this fundraising was caused by one amazing woman who inspired not just me, but also those around her, to want to change something and want to improve the lives of others with the MS.

That this is one of the legacies she left behind is nothing more than any of us who knew her expected, you only have to look to the impressive amounts that were donated in her name when she died in September to see just how much she touched the lives of others. I am truly proud to have had her as my mother and feel blessed to have had her in my life. I like to think she would also be proud of me for showing I have inherited just a little bit of her organisational skills in putting together a charity event, although I did need a fantastic team behind me to help me pull it off, to all of whom I offer all my thanks. MS-UK is a fantastic charity supporting people affected by a truly challenging condition and I feel honoured that I was able to support this cause even though my contribution was small. I think what my story shows is that the memory, love and respect for one amazing person can make such a difference, and I will be forever grateful that my mother was one of those people.

Find out more about fundraising for MS-UK

The support of people like Grace mean we can continue our work being here for anyone affected by multiple sclerosis. Call Lucy on 01206 226500 or email Lucy today to order a free fundraising welcome pack and start your journey!

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

Guest blog: ‘Raising’ funds for MS-UK!

Posted on: February 05 2019

In this guest blog, John Williams tells us all about why he has chosen to 'raise' funds for MS-UK!

My name is John Williams and I’ve been asked to write a blog because of the way I’m trying to raise a little money for MS-UK. I’ve never done anything like this before so I’ll apologise in advance if I waffle on too much.

First, a little about me.Photo of John Williams

I’m a lifelong strength athlete who was diagnosed with multiple sclerosis (MS) in the summer of 2018.

I’ve trained for and competed in strength sports for most of my life - 45 years this year (I’m 55 at the moment). My first Olympic Lifting (the type of weightlifting they have at the Olympics) competition was in November 1974 and I went on to be a National Champion by the age of 16.

At the end of 1979 I competed in my first powerlifting competition, which is much more reliant on brute strength. Powerlifting is the squat, bench press and deadlift. A change is as good as rest so I had a go - the next Olympics in 1984 seemed so far away. I had every intention of going back to weightlifting.

I went on to be a multi British, European and World Champion across four weight classes and broke several World Records in the World Drug Free Powerlifting Federation. My last World title was in Russia in 2003, after which my body needed a rest but my need for endorphins runs deep so I switched back to weightlifting instead.

In 2004 I was British Masters (over 40) champion. I followed this up with a third place at the Welsh Open and first in the Welsh Masters. The next few years saw a number of operations, some of which were to repair the damage caused by years of long heavy training sessions and one or two to upgrade internal fixation I’d had put in years before following a motorcycle accident.

I’ve always been the sort of person who loves a challenge, even more so if someone has told me I wouldn’t be able to do it, so in 2009 I started the long road to the 2013 Masters Games. However, it was not to be and in 2012 I completely ruptured my right biceps at the shoulder and either ruptured or partially ruptured all four parts of my right rotator cuff (muscles in the shoulder). As far as recovery was concerned it was by far the most difficult injury/operation I’d had.

By the summer of 2014 I was back on the powerlifting platform representing Wales in the Four Nations Championships. My first competitive outing in a long time and I managed to break three British Masters Records, one of which had stood since 2000. During this time I even entered a strongman contest, a bucket list thing. I knew I had no chance of winning, the next oldest person was just over half my age but I managed to place top 3 in one event and actually won another. I was pleased I didn’t actually come last overall.

It was at this time that I began to notice it was taking longer to recover from workouts and my muscles ached far more than they should have. At first I put this down to 40 odd years of heavy training. I was still competing once, maybe twice a year and broke all the Welsh Masters Records in two weight classes and as I write I hold several open records across two weight classes as well.

My ability to train hard and recover was slowly but surely decreasing and by the beginning of 2018 I seemed to be constantly sore and was sustaining one injury after another – time for a visit to the doctors and a string of visits to the hospital.

Photo of John WilliamsOnce I got my diagnosis of multiple sclerosis it was a bit of a relief to be honest. It could have been something far worse and at least I could still go to the gym, albeit training very differently.

I’ve always tried to put something back into the sport I’ve enjoyed for so many years, promoting contests, refereeing, coaching and I currently edit the website for the Welsh Strength Association so once I’d settled into a training routine my thoughts turned to trying to use what I could do to raise a little money for MS and the only thing I could think of was lifting weights.

So, that brings us to what I’m doing. Phase one of my goal is to total 600kg over the three lifts (powerlifting) and to set Welsh Masters Records in each lift at the Welsh Cup on 03 March 2019. At the time of writing this I’m on course to it but as you can imagine it will depend on having enough good days to make progress, I am incredibly stubborn and driven though!

I picked MS UK because it offers support and is hands on in its approach to helping - you can see where the money goes!

I’ve opened a donation page for MS-UK on Facebook

Phase two of my goal will be more difficult – my plan is to return once again to Olympic lifting and compete in the Welsh Masters in November 2019 and hopefully raise a little more money.

We wish John lots of luck with his challenge!

If you’ve been inspired by John get in touch with Lucy to order your fundraising welcome pack today! Just email Lucy or call on 01206 226500.

If you feel ready to get going you can set up a Facebook fundraiser today!

Guest blog: Is a hand-controlled car right for you?

Posted on: February 04 2019

christian hand control car.jpgIn our latest guest blog, MSer Christian Rolfe talks about his new hand-controlled car and tells us what to expect from the assessment.

I've been on the Motability scheme some years now and in April 2018 I was driving an automatic with a hoist for our scooters. Normally when my licence expires I get a letter which I send back and a new licence arrives for 3 years, but this time I received a letter requesting I made an appointment for a medical to determine my fitness to drive.

The appointment was 10-15 minutes or so and I didn't get off my scooter nor was I examined. I was asked a few questions to measure my cognition. After the "physio" I was given 5 years on my licence instead of the normal 3. 

Having already gone from a manual to an automatic 3 years ago because my left foot and leg was giving up, now my right leg was feeling icy cold and a bit painful. This started last summer in the boiling heat.

Having had 4 or 5 near misses, my partner and I went on a cruise to New York and back. On the drive home from Southampton, the M20 was shut and the Satnav took me to another road that it didn't recognise. I was forced to go down a very narrow country lane and I crashed the car. I was going too fast and my right foot was unable to control my speed and would not respond to hit the brake.

I decided to contact Motability to ask about hand controls. They gave me a number of a place that does driving assessments. I was worried about the assessment but it was totally fine. I was given the sort of examination a neurologist would and then I drove their car. The type of hand control I have and was assessed on was a ball on the steering wheel for steering with your left hand and a push-pull lever for acceleration and braking operated by my right – you pull towards you to accelerate and push away to brake.

The assessment is as straightforward as can be although my very good looking but not equally functioning legs did want to get involved. I was taken out for around 20 minutes when they told me I was suitable. I received the report in the post a few days later. I think it said "world’s greatest driver" but I could be wrong…

After the assessment Motability will pay for you to have up to 6 lessons with the hand controls but it's up to you. Anyone thinking about hand controls needs to do it. There really is nothing to worry about!

Our helpline team are here to help...

You can email our helpline team with any questions you may have about Motability or driving with MS.