“It’s been amazing” – families enjoy time together at MND Association memory making day

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A family fun day was held on Sunday 29 January at the Bendrigg Trust in Cumbria, and saw families affected by MND enjoy activities including face painting, climbing and a sensory swing. As well as getting involved in accessible activities, families were able to share their experiences of MND with each other.

The event was organised by the MND Association Children and Young People’s service, with the North Lancashire and South Cumbria support group and involvement from the local Area Support Co-ordinator and the Lancashire and South Cumbria MND Care and Research Centre. MND Association staff and volunteers, health and social care professionals, and most importantly families affected by MND all came together to support one another.

Catriona Bamber, a Family Support Worker based at the Lancashire and South Cumbria MND Care Centre who helped lead on the event said the purpose of the day was “to have fun, step away from MND for the day and for the families to have the best day ever.”

Rob, 41, was diagnosed with MND in February 2022. He attended the day with his wife, Sarah, and their two sons, Theo and Freddie. He said: “MND has affected me from the shoulders down so there are lots of things I physically can’t do. But in the same way, mentally I actually find it better as I can still speak and my mind is fine so I can still have that interaction with my family. It’s better to think about what I can do, rather than what I can’t do.”

Rob and his family appreciated the chance to meet with others in the same situation. “It’s been amazing. It was great to meet the other families, as well as people I know from the MND Association in a relaxing way instead of a formal appointment.”

Michelle, whose mother Debbie has been living with MND for a year, attended the family fun day with her son, Charlie, and daughter, Holly. She said the day gave her children the benefit of seeing they are not the only family affected by MND.

Michelle said: “We are still hopeful of finding more things we can do together as a family like this that Mum can still be involved in. Life still goes on, so live it – there are still lots of things on offer. Initially, the MND diagnosis on a person you love, the head of the family, takes your breath away. But the team from the MND Association around my Mum have been tremendous. You always feel like you’ve got someone to turn to.”

Emily Akerman, Children, Young People and Families Project Worker at the MND Association said: “The memory making day at Bendrigg was a huge success. We brought together families with a mutual understanding of MND to connect with one another and have some fun. It was a pleasure to see young children making their dad a bracelet, teenagers flying through the air on a sensory swing, and siblings and cousins giggling their way down a tube slide, while their families watched on with huge smiles.”

We are very grateful to the James Milner Foundation along with the local MND support group, who funded the memory making day.

There are more MND Association memory making days taking place in various locations across the country in 2023. To find out more, email: cyp@mndassociation.org

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For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262