#strongerforlonger - Muscular Dystrophy therapies

Supporting carers and families affected by muscular dystrophy

Muscular dystrophy doesn’t just affect individuals, it has a profound and life-changing impact on whole families and loved-ones too. It can be very challenging and isolating to be a long-term carer, and life can change direction as a result. Access to specialist clinics through a centre like the Muscular Dystrophy Support Centre has many benefits for family members and carers.

Often, the search for specialist therapy is so all-consuming that we can forget how important it is for carers to have an outlet too. That’s why we are pleased to share Vicki’s story with you, demonstrating the positive impact a specialist clinic has not only for service users, but for carers like Vicki too.

 

Vicki’s story:

“I originally got to know the Muscular Dystrophy Support Centre through my son, Jonathan. Jonathan had Duchenne Muscular Dystrophy, and he used to come to the Centre for physio and osteopathy.

Jonathan passed away in October 2017. I had spent the past six years of his life as his full-time carer, and a huge gap opened up for me. I used to spend a lot of time looking after my granddaughter Ivy Rose, but when she started nursery the gap opened up again. I had entertained the thought of helping out at the Centre, but I wasn’t ready. It took me a long time to pluck up the courage to even come back and visit, and it was a very emotional day. I know the place well and it holds so many memories for me.

I finally visited with my daughter and we chatted with the Centre staff. Ruth, the Chair of Trustees, mentioned needing volunteers to help with the safeguarding requirements – essentially meeting and greeting service users and taking them to and from the physio suite. It was my daughter who made me go for it – she said “Go on mum, it’ll get you out the house.”

I’m so glad my daughter said that. Volunteering at the Centre has helped me so much. My confidence had taken a major dive – I previously worked at a university but I hadn’t worked in an office for 6 years. I wasn’t sure how to talk about my time as Jonathan’s full-time carer at first. I had learnt so many useful skills while I cared for him, but I had no idea how to put this across to other people. I wasn’t even sure what type of job I’d like to do.

It took a lot of courage for me to begin volunteering, and I was very nervous! But it’s got me back into talking to different people – not just doctors – and I really like being back in a work environment. It’s such a nice bunch of people, and I enjoy talking to the service users. I’m pleased to be giving something back to the Centre for all the help they gave to Jonathan.

I would like to get back into work in the future and I know that volunteering will help me on my way. I’ve updated my CV, and I might look for something admin-related in a care setting, as this is an area I’d like to be involved in. Or I might launch a creative business on the side. Soon I will take the next step.”

 

Fundraising update:

So far we have raised £2,079 of our £3,750 target to begin producing a toolkit for clinics or free use by the muscular dystrophy community at large. Thank you so much for supporting us!

Together, we can transform access to specialist clinics for muscular dystrophy and give whole families the support and positive opportunities they deserve.

#strongerforlonger