York, Leeds, Harrogate and Teeside MS Society groups joined forces during the first lockdown. York group coordinator Tony Cardis and Leeds volunteer Jag Parekh chat about what they achieved and what motivates them to volunteer.
Tony: I had an idea to do an exercise class when COVID-19 hit, but I needed to find an instructor and I thought it would be easier to find someone already doing it. Then Jag got in touch and we just hit it off.
Jag: I was already running Zoom exercise classes for the Leeds group, and then it just happened that Tony came along and he got three more groups involved. Our thought process is similar.
We hold five classes a week on Zoom – three in the mornings, one in the afternoon, and one in the evening. There is a seated exercise class, seated yoga and meditation - Tony
Jag: On the Friday we also have an ‘MS chat’, and people can chat and carry on and ask about issues.
Tony: We had a weekly exercise class at gym before, but it was difficult for a lot of people to get there, so numbers were not that spectacular. Now you can basically just fall out of bed for a class online, and for meditation some people even stay in bed. The biggest class we’ve had was 119 people, but we average about 80 a week.
Jag: We want it to carry it on even as COVID-19 rules ease because we really don’t know when things will open up completely. And not everyone will feel confident mixing for some time.
Tony: I see it as all of us now – we’re one great big group.
Jag: The amount of praise we’ve got – people are so grateful that they can do something and go somewhere. At the point we set it up it was a really good time because people really couldn’t get out. A lot of people wouldn’t go anyway to an in person class, because they can’t, but they can come to this.
Personally, I could have got to places but I never used to go. I didn’t want to walk around with two sticks, I didn’t want to be seen with sticks. But this is ideal, no one can see if I can walk or can’t walk. No one knows where you are with your condition. You don’t feel so exposed.
Tony: Everything is offered to the whole network now. Harrogate is not the biggest group, and they wanted to do a book club, but they only had three people to join. Now it’s an open invite and all of a sudden they have 20 people turning up.
We are helping more people. It’s absolutely fabulous, I get a right buzz out of it – the more that come, the better. We are always saying how excited and happy we are - Jag
Tony: I was lucky – when I was diagnosed in Norfolk I had the support of a local group which worked closely with the MS team at the hospital.
When I moved to York. it was different. The hospital didn’t have a full time MS nurse, and this is what made me want to volunteer locally. I believe we should all have the same level of support, it shouldn’t differ due to where you live.
We were lucky enough to have a really good Local Network Officer – Sally Snowball (now Regional Development Officer), and it all worked out well in the end. But it took a bit of work to get there. We had to lobby MPs, councillors, write petitions, but now the group and hospital work closely together.
Jag: I knew I had MS in 1999, but I wasn’t officially diagnosed until 2008.
MS was hard to accept initially, but I’ve got it, and I’ve got to live with it. I wanted to help others with my condition - Jag
I really struggled to find anything about MS – some of the simplest things I had to research myself. Then when COVID-19 hit I just sat around thinking ‘I’ve got to do something’.
People always saying how well we’re doing, that’s all I need, I think – a thank you.
Tony: It’s also about having a laugh. I am technically the group coordinator, but we all work as a group, we all muck in – if we can help, we help. We’re not really bothered about roles or hierarchy, we all consider ourselves volunteers.
Jag: It’s not just about proximity if groups are joining together either – you need to get on, to have that connection and drive. It’s better not to force it and to let it happen naturally.
Volunteer with us
Whether it’s offering support, raising money, managing social media accounts or volunteering for the MS Helpline – there’s lots of ways you can help us be there for everyone with MS.
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