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Every cloud...looking for the positives of living with multiple sclerosis

Posted on: April 27 2018

Overcast sky guest blogger Jo Cole perks of living with MSIn her latest blog, Jo Cole looks for the positives of living with multiple sclerosis (MS).

Now I'm generally a glass half full kind of girl. I try to stay pretty positive. Having a chronic condition like multiple sclerosis can challenge that outlook somewhat, but I do my best. There are many things that MS stops me from doing, but it does occasionally open doors for me...literally in some cases! So here are a few positives to having MS.

1. Car parking

I have the 'magic' blue badge. This allows me to park on double yellow lines for up to 3 hours! I know! Double yellow lines! When friends sometimes give me a lift into town and I show them where to park they often can't believe it. It is very handy. Not least because I can't walk very far so parking near where I need to be is hugely helpful. Once people realise where I can park they are keen to offer me a lift again (and I'm not complaining!) And it's free too.

2. Free carer tickets to expensive attractions

This is very useful! Attractions and venues often offer a free carer ticket with proof of disability. On a trip to Madame Tussaud's this was particularly good as it was 35 quid to get in! However, my dad did 'earn' his free ticket having to help me negotiate the crowds and limited space on my mobility scooter. It still amazes me how I can sometimes appear to be nearly invisible when I'm using my scooter!

3. Queue jumping

Again a handy one for busy London attractions. On both the London Eye and Madame Tussaud's there was fast track admission for me and my party as the number of people on wheels is limited and they need to arrange ramps and lifts. Even though I'm sat down it can still be energy sapping to be queuing, so it's great to be able to save my energy for the fun stuff! We even had use of our own personal lift and got to go in the VIP entrance to one of the exhibits! Theme parks often offer similar schemes.

We recently had a good experience at the O2 Academy in Leeds too. Early admission to the venue to limit queuing and get a decent unreserved seat in the balcony. It's always worth asking the question.

4. Learning to prioritise what matters

On a day to day level, you have to learn to prioritise what is important. If you only have a limited physical capacity then you learn what to focus that on and what not to waste your time on. Yes my condition does restrict what I can do (no more tap dancing for me!) and that can be very frustrating, but there is much that I can still do with some extra planning. And if that means the pots don't get washed til the next morning, the house isn't tidy or our clothes are a little creased, does it really matter?! I don't think so. There are more important things in life than housework!

5. Contentment

Now don't get me wrong. I do very much wish I didn't have MS and that I could do the things I used to do. However, I am pretty content with my lot. I don't strive for the flash car, the big house or the exotic holiday. I am grateful for the roof over my head, loving family and friends and for when I have a 'better' day. I don't claim to have it completely sussed and I still have times of immense frustration, but I have generally learnt to manage my expectations and seek pleasure from the simpler things in life. 

The future of MS

Posted on: April 26 2018

Dr Adi Vaknin, senior neurologist at Hadassah Hospiatl Ein KeremDr. Adi Vaknin, Senior Neurologist at Hadassah Hospital Ein Kerem, discusses predicting clinical outcomes for multiple sclerosis (MS) patients

More than two million people worldwide live with MS, of which 2-3 times more are women than men, and the condition is the leading cause of neurological disability among young adults. So what is their prognosis? 

'We don’t really know what an individual’s prognosis will be when we first diagnose the disease,' relates Dr. Adi Vaknin, Senior Neurologist at Hadassah Hospital Ein Kerem. 'That is because there is so much heterogeneity in outcomes.'

While 15% - 20% of MS patients do very well, 50% - 70% need strong medicines to live a quality life. It is this uncertainty that has led Dr. Vaknin to start a biobank to study clinical outcomes for newly diagnosed patients. By identifying a set of proteins (biomarkers) within an individual’s peripheral blood, Dr. Vaknin and her research team have been able to predict, for example, a patient’s response to interferon, a common treatment for MS. 

The past 15 years have seen the development of some very effective MS medications. Currently, Dr. Vaknin reports, there are 10 medications available, but their effectiveness varies from person to person. 'There is also a limited time window to start treatment. If you miss that window, some of the medicines are not very effective.' she says. There are, however, 2 new medications on the market specifically designed to treat progressive MS.

One common thread in MS is the degeneration of myelin, the sheath that protects the nerve fibres. Dr. Vaknin is researching the ability of certain proteins, found in the fluid surrounding the brain, to renew damaged myelin. Being able to rebuild myelin in MS patients is only in the research stage, although she estimates that 'it will happen in the next five years.'

In the meantime, what advice does Dr. Vaknin have for those who are living with MS? She recommends 2,000 units per day of Vitamin D, particularly found to be effective in preventing the occurrence of the disease in any offspring. Dr. Vaknin also suggests exercise, a healthy diet and no smoking. She adds living a less stressful life to the list, but acknowledges that this 'is not so easy to do.'

Download MS-UK’s Disease Modifying Therapies Choices leaflet for more information about all available MS drugs.

 

How is your relationship with you?

Posted on: April 25 2018

Photo of Nileema from MS-UKNileema Conlon Vaswani, MS-UK Counselling Coordinator, discusses how MS can affect relationships.

Multiple sclerosis (MS) is a physical condition of the central nervous system where a process of demyelination can create a range of physical changes in the individual. However, these changes have cognitive and emotional repercussions which can influence relationships with the self and others.

Identity

If someone has become accustomed to leading a busy independent life, living with MS can be a frustrating experience. Changes that are made as a result of circumstances rather than choice are harder to accept and there can be a helplessness about not being able to overcome them. Perhaps there is a sense of loss of the old self and anger at the new self, especially when the MS is progressive and therefore irreversible.

There is also a sense that MS can be all-encompassing and all-defining. The question is whether MS is a condition that the individual has or whether it is synonymous with their identity. If they see themselves as their MS, then how they relate to themselves is likely to be different and more difficult than it was before.

What others see

Even where there is a separation between the individual and their MS, it is possible that other people might see just their MS. If there are visible physical changes, such as difficulty walking and the use of mobility aids, these might draw attention away from the individual and focus instead on the MS. This can lead to frustrations for the individual who wants to live life beyond their MS. Family and friends might have a tendency to be overprotective to compensate for their own helplessness in not being able to change their loved one’s condition. Over engaging in the individual’s everyday needs, trying to convince them that they should give up work or suggestions that they make other changes, can feel stifling.

How you see you

Changes to our internal world can influence our perception of the external world and subsequent relationships within it. If we are struggling to understand changes within ourselves, it is likely that others may also not understand these changes. The loss of independence means that there is either going to be a change of lifestyle or a greater dependence on others.

Adjusting to change

Often, where there are sacrifices to independence, those close to us can assume roles outside of the given normal. A partner, for example, might also turn into a carer. These dual roles present challenges that may compromise the original relationship. Where a partner has to assume largely a caring role, then there can sometimes be little room left for other aspects of the relationship.

The individual with MS might also want to disown their emotions and have a ‘beat it’ attitude towards their condition. Emotions that are brewing but not acknowledged might be channelled through anger towards others. Using this projection as a defence mechanism might help the individual cope with the uncertainty of their MS, and the uncomfortable and difficult feelings that it presents.

Call 01206 226500, or visit our MS-UK Counselling page.

Guest blog: Gemma’s 25th birthday party in memory of Mum

Posted on: April 24 2018

In this guest blog, Gemma Bendell shares why she is hosting a special dinner and dance in memory of her Mum Deborah, all in aid of MS-UK...Photo of Deborah Bendell

Like many others, I lost a special someone to this cruel disease on 13 February 2002 - my Mum!
 
As a promise to myself, I have vowed that for each landmark birthday I have - my mothers name, Deborah Bendell, will be honoured - as without her, I wouldn’t be celebrating at all. So, for my 25th birthday I am hosting a Dinner & Dance in aid of this amazing charity, MS-UK.
 
Multiple sclerosis is a cruel disease and those who suffer with it can often deteriorate extremely quickly and unfortunately this was the case for my Mum. Despite the pain and suffering my Mum went through, she’ll always be remembered for being the happiest and cheekiest person in any room. I aspire every day to make her proud and resemble her in some way - so for me, this fundraiser is just the start of a long journey. 
 
I may not have had much time with my Mum, as I was only 8 when she passed; however I know the support we received after her passing was second to none and this charity, MS-UK, is able to offer similar to others in need too.
 
So the long and short of it, if you aren’t able to celebrate with us on 27 April at the Dinner & Dance (see below the flyer for contact details) but would like to contribute to this special charity, any spare change to reach my goal is unbelievably appreciated! 
 
In memory of Deborah Bendell, my Mum, and other loved ones suffering!

You can donate to Gemma’s fundraising on her fundraising page online.

Gemma event poster.png

Guest blog: Shaun Marriott works through the grit to run this year's Virgin Money London Marathon for MS-UK

Posted on: April 17 2018

After falling ill and not being able to train, Shaun Marriott is back up and running and ready for this week’s Virgin Money London Marathon…

Hello everyone, I'm Shaun Marriott and I will be taking part in the Virgin Money London Marathon for MS-UK this year!

When applying for a charity place in the Virgin Money London Marathon there was only one cause I wanted to help and that was MS. I know two people with the condition, one being my stepdad. He is a kind man whose everyday life has become a lottery on how, if and when he has a bad flare up. His headaches can leave him hidden away, he suffers with shingles and viruses every month, yet he still continues to battle on and support me and his kids, he is also a fantastic step-grandfather to my boys. The other person I know is the wife of a friend of mine who has struggled over the years too.

I feel the work that MS-UK does is massively important, as there’s no cure for the condition, but the help, support and facilitates they offer are vital.

I believe a positive mind and healthy lifestyle can be the medicine, so when I found out I was doing the Virgin Money London Marathon I started training. I was only running 3-5 miles every other day, but it was easy because it was nice weather and I had more time.

Since coming into the winter, trying to find time to train has been harder because I work as a gritter driver for the Council. I’d been trying to run when I should have been resting, which I think resulted in getting an illness half way through December. I wasn’t back to feeling 100% until late January. Thankfully I have come out the other side and training is now going well again. I’ve just got a few more big runs to do before the big day!

A lot of my fundraising was undertaken at my wife's family business Grendon Lakes, they hold weddings, camping and glamping. I had collection pots on the bar for guests to put lose change in and held a raffle offering a chance to win a night in one of the luxury couples tents. I sold tickets for £1 and raised a total of £500 from the pots and raffle. £2,000 seemed a lot of money to raise and I'm nearly there with help from family and friends. All I hope for on the big day is that I can do everyone who has helped and supported me proud and support a fantastic charity.

Thank you everyone!

You can sponsor Shaun today online!

 

Running for Dad in this week's marathon!

Posted on: April 16 2018

In our Fundraiser of the Month article for April, Vic Darnell tells us why she is taking on the Virgin Money London Marathon in aid of MS-UK this weekend...and why every step will be for her Dad...Photo of Vic's dad running the marathon in 1986

When I was eight years old I remember joining thousands of other people lining the streets of London, waving and cheering as streams of people ran past. At the time I didn't really understand the enormity of what those people were doing, running mile after mile, some fast, some slow, some walking but all in the aim of completing 26.2 miles. Amongst those people was my Dad. 

Fast forward a few years and my Dad had to take every ounce of energy he had and a hell of a lot of drugs to pull himself out of his wheelchair and slowly holding tight on to me, walk a few steps down the aisle of a church on my wedding day. He had been diagnosed with multiple sclerosis (MS) the year before and had his world turned upside down. From being fit and healthy, in the Police to being forced to take early retirement and a complete change of life. 

For years after I watched my Dad, I would watch the marathon on TV every year saying to myself 'one day', and since taking up running the itch has needed scratching so I decided the year I turned 40 to make my bucket list dream happen to take part in the most amazing marathon in the world.

As soon as I heard I'd been accepted to run for MS-UK I set the wheels in motion for my fundraising, looking at where I could start generating easy money with little effort whilst I planned a big fundraiser. Sponsorship started coming in as soon as I announced my challenge and as a Slimming World Consultant I have had amazing support from my members for my fundraising. I have a change pot in group and my members along with other groups in Chelmsford, Essex agreed for the next few months to have these for MS-UK. Everyone's odd 5ps, 10ps are really adding up to over £50 a month donated this way. Again members supported through donating their slimmed out of clothes which were swapped for cash and a Christmas raffle in my groups raised £284.

MS-UK charity night 3.jpgMichelle who runs Chelmer RoadRunners, a local running group which is where I first learned to run completing a couch to 5km course, sings in a local band and I approached her to sing at a charity night I was planning. Seen as she got me into the mess in the first place it seemed fitting to have her at the event! A local pub was the venue (free hire to maximise funds raised!) and with the fabulous entertainment, a raffle to be held. After hundreds of letters, emails and approaching local companies I managed to secure some great donated prizes and started selling raffle tickets to people who couldn't make the night, again to ensure I raised as much as possible. Promotion of the event went out on social media, posters up locally and great support from local papers - three have now printed my story to help further support!

The charity night went well, everyone had a fantastic time and most importantly a brilliant £1,186.06 was raised to bring my total fundraising over my initial aim of £2,500 - but I'm not stopping there - a sweepstake planned, further change pots and sponsorship will hopefully bring the total to £3,000, or more! Every penny will help MS-UK give amazing support to people like my Dad.

So now, the countdown is on till the big day itself where I shall be so proud to be running the same streets that my Dad did in 1986 (but not accepting his challenge of beating his time of 3 hours 35 minutes!)

You can sponsor Vic today online

 

Guest blog: Rosie's marathon for MS-UK!

Posted on: April 11 2018

With just over a week to go until the Virgin Money London Marathon, this guest blog is from Rosie Rollinson, who will be taking on the capital in aid of MS-UK! Read on to find out why she's running 26.2 miles all to raise vital funds so we can support people affected by multiple sclerosis (MS)...Photo of Rosie, MS-UK marathon runner

Hello!

My name is Rosie and I am in my second year of university, I am studying Politics at Leeds. I grew up in a very active family where Mum and Dad encouraged us to play team sports at school, took us on regular skiing holidays and liked us to push ourselves. Although not as athletically blessed as my brothers, I still took part and enjoyed every moment.

Upon arriving at university, hours spent doing physical activity dramatically dropped and by the end of my first year I knew I needed a challenge to get me going again. The Virgin Money London Marathon had always been on my agenda having watched my Mum train and run both London and New York for MS as a child and then more recently witnessed my older brother complete it. My Mum ran for multiple sclerosis for her brother who has lived with the disease for almost two decades…hence why MS-UK seemed an obvious choice for me! So one day as procrastination from some university work, I entered the ballot and applied to a couple of charities that were close to my heart, not really thinking anything would come of it. A couple of weeks later I received a call from Jenny who offered me a place for MS-UK, and I accepted it…and that is how I am here lining up to run the London Marathon!

Upon returning to university, I started my training plan…let me tell you nothing sorts out a hangover like a 5mile run in the cold! All was going well until the end of October when I started to get this searing pain in my foot every time I put it down, having ignored it for a while my friends dragged me to A&E and I heard every runners worse nightmare…you have a stress fracture. So I dutifully spent the next 7 weeks in a moonboot, doing very little and followed the doctor’s advice to the T as I returned to running. I am now well back on track, although I have to take it a little steadier than I would like, I have completed a half marathon in 2 and a half hours. I have three more long runs till the big day and the excitement is building with each week!

Finally, fundraising is going well! I have had some very generous donations from friends and family. My first sponsorship push was to write to all my Mum and Dad's suppliers and ask for donations, and golly were they charitable! Its been a busy couple of months juggling training, fundraising, university, eventing, working and maintaining some sort of social life but I wouldn’t have life any other way!

Thank you to everyone who has supported me and hopefully see you the other side of the finish line! 

You can sponsor Rosie today on her fundraising page!

 

Product review: The People’s Panel

Posted on: April 11 2018

The latest products reviewed by you for the MS community

MSer Glenn Perry from Swansea tests the Biria Easyboarder Bike.

About this bike

This comfortable step-through bicycle makes riding a bike easy and enjoyable.

Featuring super-high volume balloon tires with a rounded contact surface, the new Biria Easy Boarding has all the cushion and shock absorption of a cruiser without the rolling resistance. In other words? Comfort and efficiency in five colours and now with black tires.

What Glenn said

I was diagnosed with relapsing remitting MS (RRMS) in October 2014. I continue to be active and work full time, however, balance and leg coordination are a continuous challenge. I recently tested and bought a Biria Easyboarder Bike, which has been a great purchase and I would highly recommend it.

The step through design enables you to very easily mount and dismount, with no sudden movements whilst keeping a firm grip of the bike with both hands. You can also sit on the seat with both feet on the ground, making it feel safe and steady to start and stop. This is good for those of us that are challenged with balance and leg coordination issues.

The seven gears work well and it is easy to change down whilst climbing a hill or slope, allowing me to manage my fatigue levels while cycling.

It runs well on tarmac and bridleways. The bike feels light (14 kgs) and is well built.

Boarding by stepping through the frame took a bit of getting used to, old habits die hard and you have to remind yourself that you don’t have to swing your leg over it.   If this is a challenge, the fact this bike is so easy to board, means you quickly get used to stepping through.

Its best feature is the fact it is so easy to get on and off. I love cycling and my main barrier was the boarding. This bike eliminates that issue.

Apart from its ease of use, it looks distinctive and funky. Many people have commented on it and I have been stopped several times by curious passers by asking where I got it and was it from a foreign country. It was great to be able to say I bought it in the UK.

Having used the Biria Easyboarder for two months, I can definitely say it makes riding a bike with MS easier.

The Biria Easyboarder is an excellent choice if you want to cycle but are anxious about boarding and pulling up – the latter can be done by simply putting both feet on the ground, whilst remaining in the seat. I have taken the bike on holiday using a Thule tow bar mounted rack. Its relatively light weight which made it easy to lift on and off.

For more information, visit www.southsea-cycles.co.uk, call 0239 229 7549, or email Kevin@southsea-cycles.co.uk.

*Promotional content

 

Guest blog: Running for Mum

Posted on: April 05 2018

In this guest blog, Ryan Hallworth shares why he is taking on the Virgin Money London Marathon this month in aid of MS-UK...

Back in October last year I decided to apply for the running of the Virgin Money London Marathon in aid of raising money for MS-UK. It was less than a week later that I was delighted to receive the phone call that my application had been accepted.Photo of Ryan, MS-UK marathon runner

My Mum, who has had the condition for a number of years is the reason why I am running for MS-UK. 

Everybody who knows my Mum will agree, she is a completely selfless individual, always putting other people ahead of herself and has an admirable ‘just get on with it’ attitude towards her condition. By running the London Marathon for MS-UK, hopefully I am giving something back, however small it may be.

At the point of my Mum’s diagnosis, I wasn’t aware of the symptoms of multiple sclerosis nor had I heard of the condition at all, which, along with raising as much money as possible for MS-UK, is one of the main reasons I am sharing the fundraising as far and wide as possible – to raise awareness and understanding of the condition, which I know is an objective I share with the fantastic work that MS-UK undertake.

Having already raised in excess of £2,000 with over 7 weeks to go until the big day (at the time of writing this), the fundraising so far has been fantastic and has far exceeded the expectations I had. People’s kindness and generosity so far has been a huge source of motivation for those dark, freezing cold training runs which I have no doubt all the other runners for MS-UK are also enduring at the moment. 

Due to the recent weather conditions and a couple of injuries, I can’t say training has been straight forward but nonetheless, remains on-track and now approaches its latter stages with a few more long runs to go, before gradually tapering the distance down as race day approaches.

A massive thank you to everyone who has donated so far, it’s hugely appreciated by my Mum, MS-UK, my family and myself. I am hoping to keep the momentum going by reaching £2,500+ by race day so please read my story and donate if you possibly can by visiting my fundraising page.

Good luck to all the other MS-UK runners with the remainder of your training and fundraising.

Thanks for taking the time to read.

 

Guest blog: MS goes to the movies

Posted on: April 03 2018

Image saying 'MS goes to the movies'In his latest humorous guest blog Doug Ankerman discusses how movie names would be different if Hollywood was diagnosed with multiple sclerosis (MS)...

Ever wondered what would happen if Hollywood was diagnosed with multiple sclerosis?

Our favourite movies would be quite different.

Roll'em and let's see how...

"Officer And A Gentleman With Leg Spasms"

"Memory Is Gone With The Wind"

"Wizard Of Odd Sensations"

"Blade Walker"

"Band Of Bladders"

"A Shot In The Thigh"

"The Blind Side Of Optic Neuropathy"

"Absence of Myelin"

"Les Miserable"

"The Interferon Hangover"

"Schindler's Limp"

"This Is Spinal Tap"  (No Name Change Needed!)

"Snow White And The Seven Neurologists"

"Full Metal Cooling Jacket"

"A Hard Day's Night Not Sleeping"

"A Fistful of Medicare Dollars"

"Singin In The Pain"

"Close Encounters Of The MRI Kind"

"My Left Foot Drags"

"Silence Of The Limbs"

"Baclofen To The Future"

"The Social Security Network"

"Poltergait"

"When Harry Met Soli (Solumedrol)"

"Avonex-Men"

Do you have any MS films to add to the marquee?

Premiere them to MS-UK in a red-carpet comment.

Till then, we'll see you at the movies!

Doug
Doug Ankerman pokes fun at MS and other stuff at his My Odd Sock humour blog.

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