Inspirational Helensburgh man tells how honest conversations around MS took 'enormous weight off'
Paul McGaw says being upfront about his condition helps to remove pressure and awkwardness from certain situations as he spoke out on MS Awareness Week.
A family man has told how having honest conversations about his disability has helped him explain to the people in his life when NOT to help him.
Paul McGaw, 47, was diagnosed with relapsing remitting multiple sclerosis (RRMS) in 2007.
This MS Awareness Week (April 28 to May 4), Paul is supporting a new national charity campaign, MS Conversations. Spearheaded by a collaboration of the UK's MS charities - MS Society, MS Trust, MS Together, MS-UK, the Neuro Therapy Network, Shift.ms, Overcoming MS, and Talks with MS – the campaign aims to encourage people to start conversations about their multiple sclerosis (MS).
More than 17,000 people in Scotland, and more than 150,000 people in the whole of the UK, live with MS.
It's a condition that affects nerves in the brain and spinal cord and impacts how people move, think and feel.
Symptoms are different for everyone and are often invisible. But one thing everyone with MS has in common is that they'll all have conversations about their condition, whether they're explaining it to family members or friends, asking an employer or medical professional for support, or opening up to a new partner.
Those conversations won't always be easy.
That's why the eight charities will be working with members of the MS community throughout MS Awareness Week and sharing resources, tips and real life stories to help make those conversations easier.
Paul, who's married and enjoys close relationships with family members and friends, said he's always spoken openly about his MS.
He believes being upfront about his condition helps to remove pressure and awkwardness from certain situations.
And it's also allowed him to explain to those close to him that sometimes when he appears to be struggling he'd rather they didn't try to help.
Paul, of Helensburgh, explained: 'I stumble and fall a lot more these days. I've got two walking poles but I only use them when I really need to because I don't want to become over-reliant on them. It's difficult to explain but I've really got to think hard to make sure I'm balanced.
'When I'm with someone and I start to lose my balance, they often try to catch me or stop me falling, but that can actually make the situation worse. So I've had to have conversations with people in my life and ask them not to do that and to just give me a bit of time to try to regain my balance.
'A while ago I went to Auschwitz in Poland with my dad, because I'm interested in history. I didn't have any walking aids back then so I was really struggling and my dad wanted to help me.
'I explained to him that I don't know which way I'm going to fall and if someone tries to grab hold of me I'm going to end up jerking away and that'll probably lead to more risk of me falling.
'So don't try to grab hold of me, just let me stumble my way through it.
'I've said to my wife, listen Colette, I love you to bits, but see when I'm like this, I don't know if I'm going to fall left, right, forward, back. Just give me that 30 seconds to try to find somewhere to lean so I can get my balance back a little bit.
'I've had those conversations with my pals as well. I talk to my best pals about my MS, and share a wee bit with them, because they're basically family. Although I do sometimes make jokes about it.
'I said listen guys, with all the best will in the world, don't try and grab hold of me. I'm actually working really hard to try and get my balance. If you try to pull me back I'll probably pull the other way or something, I don't know. I honestly don't know how my body is going to react.
'It's a difficult one to try to convey to people who are just trying to help. And I know it sounds a bit selfish in many ways – telling my dad or my wife to let me fall on the ground.
'It took a while for people to accept it, and to realise that I'm not doing it to be all 'look at me' or 'woe is me'. No, it's because I'm trying to keep as much self-respect, dignity, and independence as I can.'
The eight charities are encouraging everyone affected by MS to get involved on social media throughout MS Awareness Week by using the hashtag #MSConversations to share their most memorable MS interactions.
When asked what advice he'd give to people struggling to have conversations about their MS, Paul added: 'You don't have to have conversations about your MS with every single person; have them with people you trust.
'Maybe your close family and friends. If someone doesn't want to hear about your MS then they're not really your pal so don't waste any energy on them.
'For me, talking openly about my MS has taken an enormous weight off my shoulders. Just try to be open and honest and that way, all the worry of 'oh god, are they going to know I've got this' and 'how are they going to react when I tell them that' – all that will be lifted right off you straight off the bat because you've been upfront and it's out there.'
Jo Anderson, Director for Scotland at the MS Society, said: 'Talking openly about MS is vital for increasing awareness, breaking down stigma, and ensuring everyone can access the support they're entitled to. But starting those conversations can be hard.
'This MS Awareness Week we're pleased to once again be partnering with other leading MS charities across the UK, this time shining a spotlight on MS Conversations.
'Encouraging conversations about MS is at the heart of everything we do year-round at MS Society Scotland, from inviting people to contact our free MS Helpline, to supporting local groups to bring people together, and promoting volunteers' stories.
'This week we're taking that one step further and sharing tools and advice to help more people have conversations about their MS.
'We'd like to say a huge thank you to Paul and everyone else who's shared their experiences so far. There's still time to join in using #MSConversations on social media.'
Join the conversation and find support by searching #MSConversations on social media. Follow MS Society Scotland's MS Awareness Week coverage on Facebook (MS Society Scotland), Instagram (@mssocietyscot) and X (@mssocietyscot).
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