Our Director of Campaigns, Care and Support, Rob Burley, gives an update on shielding and what this means for individuals with muscle-wasting conditions and their families. 

This week the Prime Minister signalled there will be more announcements coming in the near-future about shielding. This follows an unexpected change to guidance at the end of May for people in England who are shielding to be able to go outside once a day if they choose to, as wider lockdown measures are eased.

I’m sure many of you who use PAs and carers are in similar circumstances to me right now, whereby all of a sudden, no matter how good your normal support structure is, you are back to relying on family and close friends for essential daily support.

Up until recently I had great freedom with really good carers or PAs allowing me to travel and go on adventures with my son Thomas (7) independently.

Freya Levy, who lives with FSHD, discusses the serious difficulties in having to shield.

My home is my favourite place to be, somewhere I can close the door and be in my safe space, with my favourite person and 4-legged best friend. So when the government announced “stay home, stay safe”, I was a big fan!

I hope this finds you as well as possible during these challenging times. Those of us who live with MD, our carers, partners, wives, husbands and family all know, or have an idea, of how tough and challenging life can be without the added addition of a pandemic.

Some of you will know what an isolated life felt like before Covid-19 came about. Now the world is having to experience what you may have experienced each and everyday due to your condition and the fluctuating nature of the dystrophy.

You may have read in the news about the financial challenges charities are facing at this time, as COVID-19 continues to have an impact on everyday life.

Sadly, Muscular Dystrophy UK is far from an exception. We have had to cancel or postpone a number of our events that generate a substantial amount of income, and estimate we will lose £2.8m as a result.

Our priority remains as it always has: making every day count for people with muscle-wasting conditions, as well as their families. We know many of you are scared right now, but we – as always – are here to support you.

Before you read this blog, written on 27 March, please remember I am not a health professional and the guidance around the coronavirus changes rapidly.

This blog by Trailblazer Emma Vogelmann is the first in a series on life during the coronavirus pandemic as a young disabled person. We will be featuring stories from several people and encourage you to get in touch if you’d like to share yours.

I first heard about the Moving Up Project from a Trailblazers representative talking at a Young Person’s hospital group that I attend monthly. A few of the members of the group had already done a placement at MDUK, so I was interested to find out more.

In this post you can read about my internal placement with the events team at MDUK in their London office. You will get a glimpse of what I got up to during the placement and hear my thoughts on it!

Those are words I’ve longed to hear for a lifetime. That they should even be considered news in 2019 is unacceptable yet not all that shocking when you’re in my wheels. 

Having a disability doesn’t mean I want special treatment, equality is all I ever ask for. More than anything I wish to blend in.

The Easter holidays are a great opportunity to take a road trip – whether that’s to visit friends or family or for a welcome Springtime break.

But I’m well aware that for many people with conditions such as muscular dystrophy and cerebral palsy, these journeys can quickly switch from a joy to an ordeal due to a lack of fully accessible toilets at motorway service stations.