David Howard, who has facioscapulohumeral muscular dystrophy (FSHD), is excited to be taking on the Great North Run this weekend in his wheelchair. His friend David Nicholson will be pushing him along the route. The two Davids, from Milford, have been close friends since David N signed up for David H’s football team in 2007.
David H said:
My name is Dominic Doran. I am 23-years-old. In July 2020 I graduated from Royal Holloway University of London with a degree in Classics. Finding a job after university is hard enough but with a muscle-wasting condition and in the middle of a pandemic lockdown, I was struggling to find somewhere to start. But that is where Moving Up came in. I knew that this opportunity would give me a supportive environment in which to hone my skills.
There are lots of exciting changes happening at the Muscle Diseases Unit at Salford Royal. The service has expanded, and there are bold ambitions for the future. Dr James Lilleker, co-chair of the Muscle Disease Unit, which provides care to people with muscle wasting conditions living in Greater Manchester, describes some of these recent developments.
As I’m getting ready to leave hospital following a short admission my respiratory consultant appears looking serious. ‘Try your best not to come back for a while’ he says, the furrows on his forehead deepening.
‘Err, I’ll do my best’ I reply, wondering exactly how this is in my control. I’ve seen headlines about a new respiratory infection in China. I’m not too concerned, but as I listen to him struggle to grasp the right words I decode that he is really trying to say: ‘I think a major world-wide pandemic is about to explode and many people will die.’
Sadly, he’s right.
Every day counts when you’re living with a rare, progressive condition. At MDUK, we’re here for everyone living with a muscle-wasting condition, from diagnosis and through every life stage and changing need. And we connect people who live with muscle-wasting conditions with others who have similar experiences. We do this not only to create community, but also to connect people with others who understand what they’re going through.
Today marks the first day of Volunteers Week so it seems the perfect time to introduce myself! I joined MDUK as Volunteer Engagement Manager in March this year, and since then I’ve had the pleasure of meeting an array of incredible volunteers. It’s cliché to say that volunteers are inspirational, selfless and wonderful people but it’s hard to express how I’ve felt when meeting MDUK volunteers without resorting to these clichés!
Jessica, who is 14, has limb girdle muscular dystrophy (LGMD2D), a muscle-wasting condition which causes muscles to weaken and waste over time, leading to increasingly severe disability. She was diagnosed aged 10, after a teacher noticed she couldn’t get up from the floor.
Life with muscle-wasting condition involves a lot of waiting and, as we transition from January to February, there is plenty which is worth waiting for.
I may sign up to a class or two at my local arts centre where they have just launched online events. I rather fancy splashing some paint about and getting into an artistic mess.
2020 was a strange and challenging year for us all; whether we are people living with a neuromuscular condition having to shield, work from home and home educate, or health care professionals. Many of our physiotherapy colleagues have been deployed to the front line treating people with Covid-19. Others have continued their usual work, but remotely instead of face to face. This has presented new challenges and opportunities and we have all become better at making this work - assessing and advising/managing our patients remotely.
Whether you have been officially shielding or not, we, the so-called “Vulnerable” (with a capital V!) understand in an almost visceral sense, the importance of keeping ourselves and others safe from this virulent, threatening virus. We therefore appreciate more than most that lockdown has been not just necessary but vital in the bid to save lives. However, that doesn’t make it easy.
Update: 22 January 2021
Since this blog was written, a second COVID-19 vaccine has now been given regulatory approval by the Medicines and Healthcare products Regulatory Agency (MHRA) after meeting required safety, quality and effectiveness standards. This means that roll-out of two vaccines is now underway.
In my last blog it was lockdown 2.0, and now we find ourselves in the midst of a third.
In the same way as last time, it hasn’t really changed anything for me but I’m pleased we are on the right side of Spring with that to look forward to.
In a way, the anticipation before Spring arrives creates a feeling within that makes this period my favourite time of year as opposed the season itself. And, I’m overjoyed to report I’ve spied some yellow in my lawn - a sleepy primrose or two trying their best to bloom.
Hello everyone! I just wanted to take a bit of time to introduce myself and what is happening with the Moving Up project. I’m Jack McLellan and at the beginning of November, I started in my new role as Manager for Moving Up, where I’ll be looking at work experience opportunities for young disabled people.
So here we are in lockdown 2.0 as some refer to it, though for me it’s pretty much life as normal, apart from the sun setting way too early for my liking. It’s literally 3.30pm as I write this but the sun is just tinkering there on the horizon.
I have been reflecting back on 2020, which really has been a year of self-discovery and growth. Who knew that hardly leaving the house for 12 months would actually open up so many doors for me - allowing me to connect to the rest of the world - albeit virtually?
In our ever-changing world of new restrictions and updated guidance, you’ll understand our need to act quickly to make sure we’re here for you today and in the future.
I’ve shared with you before how devastating an effect the COVID-19 pandemic has had on the majority of charities, with MDUK projecting a £2.8m drop in income this year. We were so very delighted on Monday 2 November to have the whole team back from furlough, and it was the first time since April that we were able to be together for our weekly virtual staff meeting.
“2020 has given me the chance to recharge my batteries after finishing university - but what happens next?”
Jordon Mossom is a photography graduate from the University of Cumbria who used his final exhibition to build awareness and help others living with Duchenne muscular dystrophy.
I never in my wildest dreams thought I would study at university, let alone graduate with a 2:2 in my photography degree at the end of it.
The National Institute for Health and Care Excellence (NICE) is shortly launching a review of the way in which it assesses whether new treatments should be made available on the NHS. This is very welcome, as MDUK and many other rare-disease charities are becoming increasingly concerned about the challenges that are faced in the assessment of potential treatments for rare and ultra-rare conditions.
A new virtual travel experience, from Limitless Travel, invites anyone in the MDUK community to book hour-long interactive video sessions, hosted by expert guides. These Zoom calls give guests a travel opportunity through video and pictures.
Whether it’s an hour strolling through Paris, excavating Pompeii ruins with an archaeologist or meditating with a Buddhist nun, these are very realistic tours.
The 25th International Annual Congress of the World Muscle Society (WMS) was held between 28 September and 2 October. Originally scheduled to take place in Halifax, Nova Scotia in Canada, it was transformed into a virtual event amid the ongoing coronavirus pandemic. Here Kate Adcock, Director of Research and Innovation, describes her experiences.
A new virtual travel experience, from Limitless Travel, invites anyone in the MDUK community to book hour-long interactive video sessions, hosted by expert guides. These Zoom calls give guests a travel opportunity through video and pictures.
Whether it’s an hour strolling through Paris, excavating Pompeii ruins with an archaeologist or meditating with a Buddhist nun, these are very realistic tours.
A new virtual travel experience, from Limitless Travel, invites anyone in the MDUK community to book hour-long interactive video sessions, hosted by expert guides. These Zoom calls give guests a travel opportunity through video and pictures.
Whether it’s an hour strolling through Paris, excavating Pompeii ruins with an archaeologist or meditating with a Buddhist nun, these are very realistic tours.
A new virtual travel experience, from Limitless Travel, invites anyone in the MDUK community to book hour-long interactive video sessions, hosted by expert guides. These Zoom calls give guests a travel opportunity through video and pictures.
Whether it’s an hour strolling through Paris, excavating Pompeii ruins with an archaeologist or meditating with a Buddhist nun, these are very realistic tours.
A new virtual travel experience, from Limitless Travel, invites anyone in the MDUK community to book hour-long interactive video sessions, hosted by expert guides. These Zoom calls give guests a travel opportunity through video and pictures.
Whether it’s an hour strolling through Paris, excavating Pompeii ruins with an archaeologist or meditating with a Buddhist nun, these are very realistic tours.
Emily Bonner has completed a 21-day yoga challenge on Zoom - which she accidentally got into after signing up her sister, who unlike Emily does not live with a muscular dystrophy condition.
Here she describes the challenges and also how she has built her ability.
Knowing she’d really enjoy it, I signed my sister up first as she’s the unaffected one, and then as an after thought I joined up too so I could watch her practice.
International Womens’ Day this year is focused on thinking about how we can bring balance to the world; how can we make equality happen?
Equality is something we’re pretty keen on as Trailblazers; we want to see a day when disabled people do not face the preventable day-to-day red-tape “Who put that step there?” no-go moments we all know a little too well and can just get on with doing their stuff.
Women’s Day is celebrated globally on 8 March every year in honour of a remarkable contribution to our society. The day also commemorates the inspiring role of women around the world to secure women’s rights and build more equitable societies.
As a young disabled woman who fights for change for all disabled people. It is a very important day for Women to be recognised for what they do to help change lives of disabled people. I look to many women for courage to carry on fighting for change.
Dear fellow MDUK members,
I made it to Paris!
Forget searching for Leonardo da Vinci though - The Louvre was crazily busy and queuing for half an hour to get a glimpse of Mona Lisa, she wasn’t worth it! Instead we found a secret tunnel in the arch and entered through there, missing the hoards, seeing everything we wanted in our own time.
That was after a slow morning eating pain au chocolat with coffee and learning how to ask for a proper baguette, “une tradi s'il vous plait”.
Dear fellow MDUK members
Today we went on a street art tour of Athens with Thomas and Kalliopi to see the alternative side to the city.
What can I say? I really, really enjoyed it! This is totally my thing.
The picture in the postcard is by Ino, He's a Greek visual artist, very active in the street scene,
He only paints in these colours and the blue represents blood. According to the explanation of this work of art, this chap is so wrapped up in money he doesn’t realise he is dying from hepatitis!
Dear fellow MDUK members,
We are in Pompeii!
I have been here before many years ago, but I had no idea that pre that massive eruption Vesuvius - (it erupted and covered Pompeii in AD 79!!) Versuvius was twice as high and had just one peak.
Today I had a walk with archaeologist Roberto along the main street. It starts at the amphitheater and ends up in the forum. He neglected to take us to the brothel, but that was ok because I have been there before (ahem..)
Emerging from the garden gate, masked up with the Mr and our two girls, that sunny day of 1 August 2020 felt so surreal.
Rolling out into a vastly different world, my littles brimming over with excitement that Mummy was finally allowed out after what must have seemed like an eternity to them, suddenly half a year that evaporated hit me like a ton of bricks. We had planned this day for so long, at times it felt like it would never happen. The neighbourhood was eerily silent and deserted as we made our way to the bus stop.
Chris Stennett, from Felixstowe in Suffolk, lives with FSHD. Here, he shares his daily routine and top tips for staying positive during the Covid-19 pandemic.
My goals are essentially the same as they were before the crisis. I have adapted them to the situation, and I’m finding that as long as I keep myself focused on what’s important, the situation becomes easier to manage.
I'm Kieron and I live in Leigh, Lancashire, with my wife, Louise, and our two children, Mila-Rose, who is seven, and Alfie, who is six.
In February 2018 our world was torn apart when Alfie, then aged three, was diagnosed with Duchenne muscular dystrophy.
We were told this devastating news over the phone by our local paediatrician and left with no direction or support. The next appointment we would have was at Royal Manchester Children's Hospital three weeks later.
If you know me, you’ll know my favourite subject is TOILETS. Yes, toilets is a strange subject to get my wheels excited about, I know, but I'm not just talking about any old loo. I'm talking about Changing Places toilets.
I’m Louise and I live in West Berkshire with my husband, Mark, and nine-year-old son, Jacob. We live in a house with a stair lift, a garden and enough space to be creative in – something I have never been more grateful for!
As we enter week 13 of lockdown and shielding, I wanted to share how my family and I are getting on and our plans to try to help ourselves and others.
I have a muscle-wasting condition, and I have been petrified by Covid-19 and the threat it brings. My immune system runs at about 20 percent and I feel my body would not be able to fight it. During this time I have been trying my best to exercise, but I’m limited due to space and we’re still waiting for official advice from governing bodies to instruct us when it is safe to go outside again.
