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Helping younger stroke survivors reclaim their lives

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Different Strokes is run by younger stroke survivors, for younger stroke survivors. The charity champions peer support and provides a vital voice to government, funders and service providers.

Stroke Rehab Times chatted with marketing manager Lauren McMillan about the challenges facing younger stroke survivors and how the charity is helping people to reclaim their lives.

Your founder Donal O’Kelly’s young age may have played a role in his stroke being misdiagnosed. Is this still happening 25 years later?

Yes, sadly misdiagnosis due to misconceptions related to age is still common and it’s really disheartening.

We run a campaign called not #NotJustTheElderly on World Stroke Day where people share their experiences of this. Symptoms are being dismissed very easily by which can be devastating, especially with younger stroke being on the increase.

It’s so important to react quickly to the symptoms of stroke. People can go days between being dismissed by their GP, becoming seriously ill and getting an MRI. You can’t undo the damage that is caused in that time.

Is there any evidence that young men are less likely to see a doctor when they experience stroke symptoms?

I can only tell you from my experiences of supporting people with the charity. But I believe that sometimes gender can play a role in getting appropriate support in some cases.

I don’t think it’s been looked into, but if you look at mental health statistics and suicide rates, the assumption is that it would follow suit in any area of life.

I’ve noticed that people following us on social media and engaging with our services tend to be mostly women, whether that is the stroke survivor or the wife, girlfriend or mother of a stroke survivor.

Women tend to be quite proactive in that whereas some men may struggle with opening up and getting the support they deserve.

Work must be a significant concern for young stroke survivors.

Yes, hugely.

The assumption is that a lot of people having a stroke are retired, so there’s not a lot of occupational support there.

Returning to work is possible but it takes a lot of understanding from an employer and it can require reasonable adjustments which sadly are not always made available.

There is a fantastic charity called Remploy, who recently did a session on returning to work after stroke at our virtual conference. This includes lots of useful advice for survivors wanting to reclaim their career after stroke.

Has this improved with our new work-from-home culture?

Post stroke fatigue is a massive issue for stroke survivors. It can be one of the most disabling invisible impacts of stroke.

The increase in opportunities to work from home is fantastic because it can allow survivors to adapt their working day to fit in with their symptoms and better manage the effects of their stroke.

More needs to be done regarding occupational support for stroke survivors who are able to and wish to return to work.

If someone has a stroke at a younger age, are their prospects for rehab better than if they’re a little bit older?

Lauren McMillan

Brain scientists have long believed that young people have more neural plasticity, which means that young people are observed to adapt and ‘re-wire’ more quickly. However, nothing to do with stroke is a one-size-fits-all thing.

Sometimes, people are told blanket statements about the first six weeks being important and that afterwards you won’t improve much.

In our experience, we find this to not always be the case – we support many survivors who continue to make progress for years after their stroke .Positivity can be an important part of recovery.

We hear from a lot of young stroke survivors who are told that they will never walk or work again.

Yes, and it’s such a bugbear for us at Different Strokes to hear this.

Our head of trustees, Ranj, is passionate about the importance of language in hospital settings. If you’re in a hospital and you’re told that you’ll never walk, talk or work it can be demoralising and affect your outlook hugely.

The reality is no one truly knows what someone’s recovery will look like in time and hope is a really important part of any long term, chronic illness.

How crucial is peer support in younger stroke recovery?

Peer support is the backbone of what we do. All of our services are run by younger stroke survivors and we see the positive impact of peer support every day.

Our online support group, networking sessions, phone line and local groups provide tailored peer support for stroke survivors aged 16+. The majority of people we support are aged between 30 and 60 years old.

We also recognise that it can be even more isolating for teens and younger people. In hospitals, most stroke wards won’t have more than one stroke survivor aged under 25 at any time.

Adolescence brings its own struggles with identity and establishing your place in the world. To have a stroke on top of that is really tough.

It is important to be able to provide a connection with someone who ‘gets it’. This is vital to keeping people motivated and keeping isolation at bay.

When someone calls us, we connect them with a trained stroke survivor of around the same age through our Befriending Service.

They can have phone or video conversation once a week or for however long they need just to talk to someone who understands and then they can raise any questions that they have.

What other online support services do you offer?

We run virtual networking sessions over Zoom twice a month where people talk about their experiences.

We also offer exercise sessions free of charge every day on YouTube and Facebook, which are run by physiotherapists. We also have around 40 local groups across the country, also run by stroke survivors.

What can we do to support Different Strokes?

Our March On fundraising event takes place in March every year. It’s an all abilities challenge for anyone who is passionate about stroke.

People set their own limits. One person might aim to walk five steps a day. Another person might decide to run a marathon every week during the month. It’s a really inspiring event.

Our next Reclaim Abseil is set to take place in September 2022 at the ArcelorMittal Orbit at Stratford Park. The structure that people abseil down is the largest sculpture in the UK. It’s an emotional day and the team there can support people of all abilitites to take part.

Events like this are a huge part of our funding and allow us to continue our work.

If anyone would like to take part- just drop us an email info@differentstrokes.co.uk

 

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