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MS-UK Blog

The runner round up

Posted on: April 20 2018

Each and every one of this year’s MS-UK Virgin Money London Marathon runners has a personal connection to multiple sclerosis (MS). All of them have a different story to tell and have been affected by the condition in a different way, but the one thing they all have in common is that it has caused them to take action and to help others with MS.

MS-UK is a national charity with a number of services used by thousands of people affected by MS every year. From the MS-UK Helpline and the new counselling service, to New Pathways magazine and the MS-UK wellness centre, Josephs Court, none of these services can exist without the help of fundraisers, donors, volunteers and legacies. So to thank those who have given up their time and celebrate their upcoming achievement on Sunday here are just a few of their stories…

 

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

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…

Running for Dad in this week's marathon!

Our April Fundraiser of the Month 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...

Rosie's marathon for MS-UK!

Rosie Rollinson, who is set to take on the capital at this year’s Virgin Money London Marathon in aid of MS-UK, explains why she's running 26.2 miles all to raise vital funds for the charity…

Running for Mum

In this guest blog, Ryan Hallworth shares why he is taking on the Virgin Money London Marathon and it’s all because of mum…

Setters & Lady’s London Pootle 2018

Setters and Lady (or Chris and Fran to normal people) tell us all about why they are taking on the Virgin Money London Marathon for those who can’t…

If you can’t join us at this year’s Virgin Money London Marathon, why not follow the excitement of the day on Twitter and Facebook.

 

 

 

Virgin Money London Marathon opened by the #SpiritofLondon winners

Posted on: April 19 2018

Wednesday 18 April saw the opening of the Virgin Money London Marathon Expo, the event that kicks of the marathon and where this year’s runners register to receive their official running number for Sunday’s big event.

This year’s expo was opened by the Spirit of London winners Matthew Rees and David Wyeth. Swansea Harrier Matthew famously helped David, whose legs began to buckle beneath him due to exhaustion, down The Mall to the finish line in last year’s race. It was that very moment that encapsulated the unique spirit of the Virgin Money London Marathon and inspired the theme for 2018.

Matthew and David are the first winners of the new Spirit of London award, followed by former boxer Michael Watson, who completed the 2003 London Marathon 12 years after suffering severe brain injuries in a world title fight against Chris Eubank. Watson spent 40 days in a coma and six years in a wheelchair before taking part in the marathon in April 2003.

This year MS-UK has 109 runners running to raise money for the charity so it can continue to support anyone affected by MS. On opening day the MS-UK fundraising team saw a record number of runners attend, ready to get their numbers and excited to run on Sunday.

Reminding runners to make sure they come along and sign up, MS-UK Fundraising Manager, Jill Purcell, said: “Runners can visit the Virgin Money London Marathon Expo from Wednesday 18 April to Saturday 21 April to register for their running numbers. We’ve seen a record number of runners attend on the first day alone and are looking forward to seeing each and every one of you.

“Every year I’m brought to tears by our runner’s stories. Everyone’s reason for running is different, but the one thing they all have in common is that we are all working hard to support people with MS. I’m incredibly proud of all our runners. I’ve seen and heard how much training and hard work they have put into their preparation and I have no doubts that they’ve got this!”

Expo has arrived!

Posted on: April 18 2018

Hi everyone,Photo of the MS-UK fundraising team

Today marks the beginning of Expo, four days of fun-filled excitment at ExCeL in London where runners taking on the Virgin Money London Marathon will be registering this week!

Every year over 100 runners run 26.2 miles in aid of MS-UK, raising thousands of pounds for us. Over 100,000 people in the UK live with multiple sclerosis, and we want to be able to provide our vital services to everyone who needs them, so every single penny they raise goes towards helping MS-UK continue our work.

The MS-UK fundraising team is ready to welcome #TeamPurple to Expo this week, so if you're coming along please say hi to us on stand 583!

Expo hours

Wednesday 18 April 11:00-20:00
Thursday 19 April 10:00-20:00
Friday 20 April 10:00-20:00
Saturday 21 April 09:00-17:00

We'll be live tweeting all week from Expo (and of course on marathon day itself this Sunday) so follow us on Twitter to stay updated!

Jill

Jill Purcell, Fundraising Manager

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!

 

Download our MS Awareness Week resources!

Posted on: April 16 2018

Hello,

This time next week MS-UK will be celebrating MS Awareness Week, and you can join us!

This year we are spreading the word about our newest national service, MS-UK Counselling. I would love you to get involved by downloading our Twitter and Facebook graphics...by adding them to your profiles you will be helping us reach even more people affected by multiple sclerosis who may benefit from counselling. 

Right click on these images and select 'Save image as...' to download them to your computer:

Facebook cover

Facebook cover MSAW - supporters_1.png

Twitter header

Twitter cover MSAW - supporters_0.png

Throughout the week of 23 – 29 April we will also be posting on our Facebook and Twitter channels so do like and follow us to keep updated.

Thank you for your help!

Amy

CEO

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

 

How does planning, organisation and memory affect the employment performance of people with MS?

Posted on: April 10 2018

Employment is a major challenge for many people with multiple sclerosis (MS) and 50% are unemployed across Europe, even at Expanded Disability Scale Score (EDSS) 3. It is likely that “invisible symptoms” are the reason for this and one of these invisible difficulties can be with memory and concentration – cognition.

Dawn Langdon, Professor of Neuropsychology at Royal Holloway, University of London and her research team are asking for your help. They are recruiting for a study which will investigate how planning, organisation and memory (together called executive skills) affect work performance.

Traditionally, cognitive function is assessed in clinics with paper-and-pencil tasks. Her team are evaluating a non-immersive virtual reality task, which is set in an office. The Jansari Assessment of Executive Function (JEF) has successfully measured executive function in other clinical groups and this is the first study with people with MS.

The study is recruiting 53 people with MS from a number of UK MS charities and 53 matched healthy control participants. Each will complete a set of questionnaires measuring fatigue, mood, cognition, work performance and coping, as well as the JEF. This will require a scheduled interview in central London, which will take a maximum of two hours.

This study will investigate three things: whether the JEF is sensitive to executive function difficulties in the MS population, whether the JEF is more closely related to work place performance in comparison to traditional pen-and-paper neuropsychological tests, and whether the JEF scores are related to coping styles.

The Principal Investigator is Laura Clemens, a graduate psychologist who is currently training to become a clinical psychologist at Royal Holloway, University of London. She is supervised by Dawn Langdon, who is a clinical neuropsychologist and Professor of Neuropsychology at the same institution. The study has ethical approval from the Royal Holloway Ethics’ Committee.

If you would like more information, please contact Dawn Langdon on 01784 443956 or email d.langdon@rhul.ac.uk.

MS Awareness Week is coming!

Posted on: April 09 2018

Hello,Photo of Amy Woolf, CEO at MS-UK

April is always an exciting month for us here at MS-UK as we mark MS Awareness Week, and 2018 is no different! 

This year we are celebrating our newest national service, MS-UK Counselling. We launched the pilot of this service in October 2017 and since then have delivered over 150 telephone counselling sessions to people with a diagnosis of multiple sclerosis. But we want to help even more people!

At MS-UK, we believe that it’s good to talk. However, we know that there can still be a stigma around accessing counselling, and we want to break down these barriers so people diagnosed with multiple sclerosis can get the support they need. 

So, this MS Awareness Week I ask you to help us spread the message that it’s good to talk! Throughout the week of 23 – 27 April we will be posting on Facebook and Twitter all about MS-UK Counselling, and it would be great if you could help us spread the word by retweeting or sharing our posts. Thank you!

Keep an eye on our blog for updates as we near the big week...

Best wishes,

Amy

CEO

New Pathways issue 108 is out now!

Posted on: April 06 2018

Hi everyone,Front cover of New Pathways

I am pleased to say New Pathways issue 108 is now landing on doormats across the country! As always we have a packed issue, full of all the latest multiple sclerosis (MS) news and research, including drug updates and the latest cannabis study findings. 

As the sunshine begins to make an appearance, we get topical with lots on vitamin D. MSer Ian Cook puts vitamin D tablets and sprays to the test (see page 30) and Kahn Johnson reveals what happened when his vitamin D levels became toxic on page 16. 

Also in this issue, MS Nurse Miranda Olding discusses sexual dsyfunction and what can be done to help (page 14) and we have the big interview with the star of Channel 4 programme 'The Search for a Miracle Cure' Mark Lewis (page 24). 

I hope you enjoy reading this issue, and please do email me your comments and letters to newpathways@ms-uk.org.

Best wishes,

Sarah-Jane

Editor, New Pathways

P.S. Don't forget New Pathways is available to read on the go. Download the My MS-UK app from the App store on your phone or tablet device today!

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.

 

MS-UK supports the next generation of occupational therapy students

Posted on: April 05 2018

MS-UK’s Head of Services Diana Crowe and Centre Manager Dean Jeffreys inspire The University of Essex occupational therapy students

MS-UK’s Wellness Centre, Josephs Court works closely with the University of Essex to support occupational therapy students (OTS) by providing role-emerging placements while they train. 

Each year the Josephs Court team is invited to speak at a symposium with the new OT recruits about role-emerging placements at its Wellness Centre in Colchester, Essex and increase their knowledge of multiple sclerosis (MS). 

Diana Crowe, Head of Services, said: ‘We took the opportunity to promote all of our services, but focused on what we deliver at Josephs Court, such as the exercise equipment and the benefits this brings to clients.’

‘There was good interaction and we were asked about the social activities we provide, so we discussed the MS-UK Social Group in Colchester, which has regular coffee mornings and other events such as bingo!’

‘Due to recent headline news regarding HSTC there was an interest in how this treatment could impact on us as a charity and our clients. Just like everyone else we will have to wait and see how the treatment develops, but we will continue to support people with MS for as long as they need us.’

‘We split into groups, which gave us a chance to speak in more detail with some of the students,’ explains Dean Jeffreys, Centre Manager. ‘The students were interested to know about APS Therapy, how we link up with other services and how politics impacts on our strategy.’

Speakers from St Helena’s Hospice spoke about its gardening project for those at the end of life and Craig, from Pots the Soldier, spoke about his post-traumatic stress diagnosis after leaving the army and how he found a love of pottery thanks to the support of OTs – very inspirational!

‘It was great to see the students so interested in the work MS-UK does and we hope to continue to work with Essex University over the coming years. Who knows one day we may have our own MS-UK Occupational Therapist,’ adds Diana.

 

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.

Guest blog: Top tips in case it snows this Easter!

Posted on: March 30 2018

In this guest blog Joanne Chapman shares her top tips for MSers who may be worried about the snow arriving again during the Bank Holiday weekend over Easter. Do you have any top tips you'd like to share? Email us at marketing@ms-uk.org if you'd like to find out more about writing a guest blog for MS-UK!

Third time lucky, not! Like me, you don’t want snow for Easter but the weather man says cold weather is on the way for the long weekend. It’s been called “the squirrel from the south” rather than a repeat of “beast from the east”, so it’s probably won’t cause the same chaos but the old girl guide in me is screaming “be prepared”.
 
What did I advise a few weeks back? Not much has changed with me. I’m still recovering from a relapse (MS for sh&t!) where my mobility and balance have been challenged. I’ve fallen several times (now looking at an personal alarm, and “No! it doesn’t order a pizza if I press it!”. I’d still be rich if I got paid to sleep as fatigue is so bad. My writing has been put on the back burner but the wintery weather has inspired me to write. Snow blog picture of Joanne's 'Little Man'
 
Shots of the snow chaos hit us all. Little man loves the white stuff. When snow really came down last time, our neighbours played out with little man. I was wanting it to be me but my mobility, balance and energy levels had other ideas. Little man’s daddy drove me us out at the weekend so I could see the snow for myself and little man could have fun with Daddy. One of the issues of bad weather plus my multiple sclerosis (MS) is lots of staying in. I didn’t realise until it happened how rubbish I would feel. If we do get more wintery weather, here are my tips for handling it for those in my boat, or anyone really...

Prepare 

You’ll probably stay in at home if mobility is challenged. It may be safer to sit inside and watch than participate. For little man, I stock up on craft kits, board games, films (I can recommend Peppa’s Cold Winter Day and Peanuts movie for little man) and books. Reading to little man is a great time filler. Ask others to buy children’s magazines. They usually have stories, colouring and sticker fun. Also make sure you have lots of food and drink supplies in to help with the staying in.
 
When travelling, I make sure I have food, drink, toilet stuff (she wee/incontinence pads, travel potty, toilet roll, baby wipes, carrier bag to put things in, gross but true!), things to entertain little man and help with going out in the cold weather (extra clothes, tissues - the cold brings out a runny nose! - and a blanket). We’ve been putting little man’s blanket on the radiator to place on him during car journeys.

Be safe

As I’ve fallen a few times, the safest option is staying at home but it isn’t always viable. Slippy snow and ice is super scary for those who have fallen and use mobility aids (my walking stick doesn’t work well in snow!) I didn’t realise you can buy an ice grip for your stick. Other mobility aids like walkers, rollators, scooters or wheelchairs probably don’t work well in the wintery weather, so make sure it’s safe and charge your scooter!  Remember you’re no Torvell or Dean! I also wear shoes I know that can help e.g. walking shoes or shoe grips. 

Don't put pressure on yourself

It’s OK to feel like you can’t be bothered. But little man is so excited. He’s seen snow in the last few weeks and there was lots of “go outside Mummy”. It’s heart breaking when you have little energy to lift your bum off the sofa, let alone play in the snow. Give yourself a break, if you can. Check weather forecasts and save your energy if you need to go out. I’ve realised that asking for help is not a sign of weakness – so family and friends had fun in the snow with little man, giving me a chance to recharge. 

Protect your mind

Asking for help helps you to rest but there is the realisation that you can’t play in the snow like yesteryear. Emotions come to a head. Grief. Anger. Frustration. Envy. Social media has a lot to answer for that. Don’t get me wrong it’s lovely to see what others are doing on their snowy days but it’s a reminder that you have limited mobility. I’ve cried a lot recently because I want to be the one to play in the snow with little man. In the interim, try not to be alone, hook up with others whether it’s friends who can come to you, speaking to social media contacts (I asked my local MS Society group for best shoe grips recommendations) and plan for brighter days (I’m thinking of summer holidays). 

Be more hygge

In the interim, snuggle down, grab a blanket, hot chocolate and biscuits, which may not be great for the waist line but I’m still scoffing! Be like a Dane until the bad weather goes away. Oh we just changed the clocks, so Spring is on the way - honest!

Stay safe everyone! I’d love to know your tips? 
You can let Joanne know your top tips, read more or follow Joanne on her blog or search for 'poorlyparents' on Facebook or @Mummywithmsjmhc on Twitter. 

 

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