Guest blog: It’s all about attitude…not age!

In her latest guest blog Joanne writes about birthdays, ageing, multiple sclerosis and yes, attitude…


Joanne pic smallA couple of weeks ago it was my birthday. Birthdays are full of the usual things: presents, cake, candles, treats to name a few. They also give us a reason to reflect. This year was the first for properly thinking I was ageing. OK, ageing is inevitable. Slap on the face cream to hopefully hide those fine lines. Hair dye to cover up those annoying grey hairs. Think about diet and exercise (have you heard about Veganuary?) but premature ageing was my anxiety.

‘I shouldn’t be thinking about all of this’! I was screaming in my head.

I also read in a magazine (Good Housekeeping) that it is all about ‘attitude not ageing’and ‘being up for it’. Even on ‘The Crown’, the Queen and her Mum were discussing about ageing.

With little man having stacks of energy, and being a very young age, I have very little reserves and feel old. I’m ‘up for it’ but my body isn’t.

I live with my chronic illness. I have to deal with many ageing realities like poor mobility, falling, rubbish memory and peeing lots. How do you deal with these things happening when you should only be thinking what face cream to buy?

To be honest, I don’t know. What I do know is that many gadgets can help, but many look like they should belong in an old people’s home. There are a few design agencies (Enabled Design is one) that are trying to lead the change but the majority of what is on offer is stuck in the past. I don’t wish to look and admit they will help me, but anything for an easy life. You look for signs of MS progression, things worsening. I fell today. Reality strikes.

A new year also gives you time to reflect, put your life in order. New year usually brings resolutions. My resolutions was not to make any (you’re most likely to break them) apart from being kinder to me. That may involve many things that new year brings like exercise, diet, being more brain active but also realising that being kinder to me (whether it’s just reading that magazine) will be good for all, especially me and little man.

I’m probably still going to look into what face cream to buy but I’m on a mission to find gadgets that help with my “ageing” and don’t look like they belong in an old people’s home.

I’d love to know what gadgets you have ( it doesn’t have to be age related ones). Here’s to a happy attitude.

Joanne

 

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Posted in blogging, Chronic illness, disability, Disabled living, Fatigue, Guest blog, health, MS, MS symptoms, MS-UK, Multiple Sclerosis, parenting, Uncategorized, welfare, wellbeing | Tagged , , , , , , , , , | 1 Comment

Fundraiser of the Month: Kimberley

In this Fundraiser of the Month blog, Kimberley tells us all about becoming one of the first 500 people to enter the London Classics Hall of Fame…all in aid of MS-UK!


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I’m a bit of a have a go girl…I’ve done marathons, swam up to 10km in a river, triathlons up to iron distance and I do love a challenge, particularly if you end up with some serious bling to keep!

In among that, I am the sister/daughter of two amazing family members who lived their lives with multiple sclerosis (MS) and while they are no longer here I am still inspired by them to keep on ‘having a go’ and also raise awareness for MS-UK who offer amazing support.

Having completed the Virgin Money London Marathon in 2005 and 2006 and RideLondon in 2015 I was really excited to see the launch of the London Classics at the Swim Serpentine Event last year. 

You could earn a fourth bit of bling – serious bling too – for swimming in the 2 mile wave of the Swim Serpentine event. So I entered! I was one of the first 500 to complete this spectacular trio and earn two medals in one day! We were also able to earn a place in the ‘Hall of Fame’, which will grow every year now.

So, if you have done one of the events, or two, then try to complete the third as a personal challenge and earn the most amazing bit of bling and bragging rights too!

It also adds a unique twist to your fundraising strategy as not many will achieve this goal very quickly.

So just go for it and bring on the bling!

Yours in sporting bling

Kimberley!

Posted in blogging, Charity, Do your own thing, family and MS, Fundraiser of the month, Fundraising, London, London Classics, Marathon, MS, MS-UK, Multiple Sclerosis, Prudential Ride London, RideLondon, Running, supporters, Triathlon, Uncategorized, Virgin Money London Marathon | Tagged , , , , , , , , , , , , , , , , , | Leave a comment

Primary progressive multiple sclerosis patient set to end his life is saved by another MSer

Yesterday evening, BBC One’s The One Show aired the story of one MSers decision to end his life at Dignitas in Switzerland.

Fiona (1)

Sarah-Jane, Editor of New Pathways magazine

Colin Campbell, 57, from Scotland was diagnosed with primary progressive multiple sclerosis (PPMS) in 1995. In the knowledge that his MS would get progressively worse he had decided that “another winter would be unbearable”.

He had chosen 15 June as the day he was going to die. He didn’t want to be alive and more disabled than he is now. His story even made it onto a local Scottish news channel.

Little did he know that just half a mile down the road from where he was living a stranger was watching – another MSer Rhona Tynan. She had watched his story and decided that she “couldn’t let this man go ahead and do this without trying”, so she phoned up the TV station and got in touch with Colin. She asked him to come and see her and how she was coping.

“I just wanted to see if I could help him see if things could be better,” she said.

Colin did go and see Rhona and they formed an unexpected friendship. After spending two “enjoyable” days together and after discussing things with her Colin decided to cancel his 15 June appointment in Switzerland.

Seven months later, Colin discussed how meeting Rhona had changed his life. He said: “My flat had become a prison. I couldn’t get out, there were two flights of stairs. You lose the will to live.

“No one had explained to me what options there were,” he explained. “If Rhona hadn’t have contacted me that would have been it for me on the 15 June. It would have been all over,” he added.

Rhona said: “It became very clear to me that Colin didn’t have the correct support for quality of life.”

“I know a scooter gave me quality of life because it allowed me to get out and about. Colin didn’t have one and he didn’t know how to go about getting one.”

So they decided to have a day out together trying out and testing some scooters. But getting a scooter was just the beginning. He also found out that he was entitled to a ground floor accommodation and 24-hour assisted living.

Inspired by her relationship with Colin, Rhona has now set up a networking group for other people who have found themselves in a similar situation.

Rhona has also recently been to Mexico for stem cell treatment and is seeing positive results. She talks about her improvements on the show and has most recently managed to walk 50 steps while holding her husband’s hand, something she wasn’t able to do before the treatment.

If you missed the show, which aired at 7pm on 14 Feb 2018, and would like to watch the full interview visit the BBC iPlayer and scroll through to 32:40 minutes.

If you would like to read more about assisted dying, subscribe to New Pathways magazine issue 107 and read a great piece written by Journalist and progressive MSer Ian Cook, as he discusses your right to die.

New Pathways is a magazine for people living with MS. The much loved title has been running for 25 years and is a great source of information and support for many MSers. To subscribe click here, or call 01206 226500.

Posted in blogging, Chronic illness, disability, Disabled living, health, Hematopoietic stem cell transplantation, HSCT, MS, MS community, MS News, MS-UK, Multiple Sclerosis, Multiple Sclerosis News, neurology, New Pathways, TV Programme, Uncategorized, wellbeing | Tagged , , , , , , , , , | Leave a comment

Guest blog: Fiona’s two truths and a lie!

Fiona Sakal, who has been a Trustee of MS-UK for over decade, recently joined us in the office for a week to see what we do to support people affected by multiple sclerosis (MS) on a daily basis. We couldn’t resist asking for an interview, and we started off with a ‘two truths and a lie’ question…


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Two truths and a lie…
I was born and raised in Germany
I qualified for the Olympic Equestrian team
I was Cabin Crew, based at London Heathrow

Read on to find out all about Fiona…

I joined the board of MS-UK in 2007, when we were still MSRC and working from Peartree Industrial Estate with three car parking spaces, one toilet and not enough windows. My brother-in-law had MS for 24 years and although I was not fortunate enough to meet him, the impact his condition had on the rest of the family remains, so I was delighted to be asked to join the Board of Trustees.
Obviously, I was full of enthusiasm and committed to running the Virgin Money London Marathon the following spring! I definitely did not take into account the enormity of the training schedule that had to fit in alongside my final law exams, a full house renovation and a wedding. Ten years later and I am almost ready to commit again, but not quite!
When Peter and I married in 2008 we decided that we would like to raise money for the charity rather than receive gifts. We were overwhelmed by the generosity of family, friends and clients and with the help of Roger Dakin and a game of heads and tails at our wedding reception, we raised £12,000.
Fast forward 11 years and two little girls, I am still as passionate about MS-UK as ever and love to get involved wherever possible. Under the leadership of Amy, the charity has grown to such an extent that I was beginning to need a flow chart to understand how everything fit together and wasn’t confidant that I was able to contribute effectively as a trustee. So here I am!
I have really enjoyed my ‘work experience’ and have found it invaluable to get to know everybody and experience first-hand what each role entails, both in the office and at Josephs Court. The atmosphere is very warm and welcoming and it is clear that everyone has a real passion for what they do. I am incredibly proud to represent MS-UK and excited to see what we can achieve in the future.

So, what was the lie?

I qualified for the Olympic Equestrian team!

Posted in #SmileswithMyles, blogging, Charity, Essex, family and MS, Guest blog, Humour, London, Marathon, MS, MS-UK, MS-UK Services, Multiple Sclerosis, Myles the bear, Trustee, Uncategorized, Virgin Money London Marathon, Volunteering, Work experience | Tagged , , , , , , , , , , , , , | Leave a comment

The winner takes it all!

Hello,

I am really pleased to announce today that we’ve launched a brand new way for you to support MS-UK – and you could be a winner!DSC_0177

We’ve teamed up with make a smile lottery to offer a really easy way to help our work supporting people affected by multiple sclerosis. There are weekly cash prizes to be won, with a first prize of £250!

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You can join online and pay by either monthly direct debit or by card, so you choose how you play. And for every £1 play, 60p will come directly to MS-UK!

So, do you feel lucky? Roll up and play!

Good luck!

Jill

Jill Purcell, Fundraising Manager

Anyone can enter; you just need to be over 16 and living in mainland Great Britain. Please play responsibly.

Legal terms

make a smile lottery, 9 The Courtyards, Phoenix Square, Wyncolls Road, Colchester, Essex, CO4 9PE. Telephone 0300 303 4500. Email hello@makeasmilelottery.org.uk. Visit www.makeasmilelottery.org.uk. You must be 16 or over to play make a smile lottery. Please play responsibly. Responsible gambling support: www.begambleaware.org. make a smile lottery is wholly owned by St Helena Hospice, a charity working with other charities to raise much needed funds. Promoter: St Helena Hospice trading as make a smile lottery. Licensed by the Gambling Commission Number 000-004685-N-306842-006 www.gamblingcommission.gov.uk. St Helena Hospice is a company limited by guarantee. Registered in England and Wales Number 01511841. Registered Charity Number 280919. Registered Office: Myland Hall, Barncroft Close, Highwoods, Colchester CO4 9JU.

 

 

 

Posted in Charity, Do your own thing, Essex, Fundraising, MS, MS-UK, Multiple Sclerosis, Uncategorized | Tagged , , , , , , , , , | Leave a comment

The ultimate Valentine’s Day gift that keeps giving!

Hi,

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Racking your brains for the ultimate Valentine’s Day gift? Well, now is the time to think about what your loved one would really like to do. Would they enjoy a dozen red roses, or a dozen reasons to smile? If it’s the latter, I have some ideas for you…

Take the plunge

Love is most definitely in the air when you’re at 10,000 feet, so what better gift is there this Valentine’s Day than arranging to take your sweetheart to new heights with a skydive? You can pick from 19 airfields across the UK and a date that suits you, and by fundraising for MS-UK you’ll be making a real difference to our work supporting people affected by multiple sclerosis.

A bicycle made for two?

Cycling is a great way to have fun together and raise funds for MS-UK at the same time! Whether it’s organising a tandem bike ride in your local area or taking on the capital at the Prudential RideLondon-Surrey 100, you and your Valentine can do it together. We’ll be here to help, with lots of fundraising materials and of course a MS-UK cycling jersey for you and your beloved.

Book a night to remember

Is there anything more romantic than getting dressed up in your finest and enjoying a delicious three course meal in luxurious surroundings? If you want to ask for that last dance, why not book your tickets for the MS-UK Summer Ball? I know this will be a truly magical event hosted at Le Talbooth in Dedham on 29 June 2018, so surprise your Valentine with tickets and the promise of a fantastic evening out!

If you’d like to chat through a fundraising idea or find out more about any of these events, just email me or call me on 01206 226500.

However you celebrate Valentine’s Day, I hope it is filled with smiles for you!

Jenny

Jenny Poulter, Events Fundraiser

 

Posted in blogging, Charity, Cycling, Fundraising, MS, MS-UK, Multiple Sclerosis, Prudential Ride London, RideLondon, Skydiving, Summer Ball, Uncategorized, Valentine's Day | Tagged , , , , , , , , , , , , , , , , , | Leave a comment

Guest blog: Running for Dad

In this guest blog Jessica Armstrong shares her reasons for running the Virgin Money London Marathon this year in aid of MS-UK


Hi everyone,

Jess Armstrong.jpg

My name is Jessica. I was born and raised in a small town just outside of Toronto Canada. My partner and I moved to London in August 2016 with the plan to work in another country and travel Europe. When I first moved here I never had any plan to run a marathon. To be honest, I’d never in my life even thought of trying to attempt to run a marathon; the idea seemed impossible to me! However, my career as a Certified Athletic Therapist led me to working in a clinic that specialises in treating runners, many of whom run the London Marathon. I had no idea the hype around the London Marathon. I figured it was just another marathon. Little did I know the next year and a half of my life would be changed because of it.

When I was about 10 years old I remember my parents sitting my sister and I down at the kitchen table. They told us that my Dad had been diagnosed with something called multiple sclerosis. Being 10 years old all I really wanted to know was, what would happen to my Dad? My parents simple answer was, “we aren’t really sure.” I’m sure they tried to explain more, but those are the two bits that I remember most: thinking what is this condition that I could barely pronounce and feeling like it wasn’t that big of a deal because Dad looked normal. Fast-forward 18 years and my fathers’ initial diagnosis of relapse remitting is now secondary progressive. He now faces daily challenges completing tasks that most of us take for granted.

January 2017 I began treating many runners who were taking part in the London Marathon. Some were elite level runners and others were embarking on a journey completely new to them. While their efforts in training were amazing, it was their reasons for running that led me to applying for the marathon. I found it admirable the change they were trying to achieve with their fundraising and I decided I wanted to make a difference too!

It has been the support from friends, family and the Canadian MS Society that have helped to make each challenge my Dad has had to face a bit easier. After learning about what MS-UK does for those living with MS and their families I knew I wanted to run for them!

I’ve set myself a goal of £2,500. I am excited to be hosting my very first pub quiz as my main fundraising event alongside a couple smaller events leading up to the day. A “Guess My Time” poster has proven to be a fun way to get my clients involved in my journey to helping raise funds for MS-UK.

These events along with the tremendous support from family and friends will hopefully help me to reach my goals and help MS-UK continue to make a difference for those living with MS and their families in the UK.

Jessica


Read more about Jessica’s efforts on her fundraising page!

Posted in blogging, Charity, family and MS, Fundraising, Guest blog, London, Marathon, MS, MS-UK, Multiple Sclerosis, Running, supporters, Uncategorized, Virgin Money London Marathon | Tagged , , , , , , , , , , , , , | Leave a comment