Keeping active especially once symptomatic is really important for mental and physical health.

From the age of two, Charly could swim and enjoyed being in the water. As she grew up she was always out and about keeping herself busy whether it was working as a carer or visiting friends and relatives.

Charly is now 32 years old and has Huntington’s disease with a CAG repeat of 58. Charly’s symptoms started about six years ago and she can no longer do the things that she used to do. Her symptoms have affected her balance so walking is an issue and her speech which means communication can be a struggle.

After hearing from a doctor in a support group that physical activity could help slow disease progression, Charly’s mum, Sarahjane set out to find ways to incorporate movement and exercise into Charly’s life.

Sarahjane also believes it’s really important for Charly to stay fit to help with her balance, keep the circulation going and reduce the risk of muscle atrophy (the wearing away of muscles). Sarahjane says:

I always say to Charly, she must be ‘HD ready’ for when that cure/treatment comes along, she has to be fit enough to work with it!

Due to the early onset of Huntington’s, Sarahjane found activities that could be adapted to suit Charly’s abilities.

Keeping active in Huntington’s disease

Although Charly can no longer swim unaided, with the help of buoyancy aids she is able to enjoy time in the water which is good for her mental and physical health.

Something Charly also enjoys is chair pilates. She goes once a week and the physios who run the class are very pleased with the results she is showing. Pilates also helps with control and balance, and it is important for Charly as this is something she struggles with.

Due to Charly’s muscle atrophy, she has been given a walker that enables her to walk safely, Sarahjane tries to make a walk part of her daily routine in order to keep her muscles active.

Positive lifestyle

Sarahjane has also been trying to keep Charly ‘stress-free, happy, healthy, occupied and positive’ as she feels this all contributes to disease progression. She does this by helping her keep moving and with hobbies like bracelet making which helps with her fine motor skills which are needed for tasks such as eating, dressing and brushing teeth which Charly can still do for herself which is an important part of staying independent. Creating the bracelets also gives Charly purpose as she is able to raise funds and awareness for Huntington’s disease by selling them.

Every week she does pamper sessions and facials to help her relax. Sarahjane also started the initiative, ‘one day a year’ which encourages old friends and distant family to come and spend time with Charly - she has seen great success with this.

Charly is a huge advocate for Huntington’s disease - she and her family do what they can to raise money and awareness. To date, they have raised over £60,000 for Huntington’s research at the Derriford Research Centre in Plymouth and are currently raising money for the Huntington’s Disease Association. Charly’s mum, Sarahjane said:

The Huntington’s Disease Association is a fabulous and supportive charity that is committed to looking after those affected. Charly likes to be involved in raising funds and makes bracelets, it does take her over an hour to make one as her cognitive skills are compromised but she doesn’t give up!

Thank you to Charly and Sarahjane for sharing this story with us.