People living with rare neuro-degenerative conditions called Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD) can now access specialist exercise classes delivered by UK charity PSPA.

PSP & CBD are caused by the loss of nerve cells in certain part of the brain. Over time this causes problems with balance, speech, mobility, swallowing and vision.

Although currently there is no treatment and no cure for PSP or CBD, managing symptoms can help people to maintain a good quality of life for as long as possible.

Recognising the importance exercise can play in the lives of people living with the condition, this year, PSPA has partnered with Neuro Heroes to deliver regular online sessions.

Classes take place via Zoom in eight-week blocks of classes which are tailored specifically for people living with PSP & CBD. 

Laura Douglas, Physiotherapist and co-founder of Neuro Heroes, explains why exercise is so important for people with conditions like PSP & CBD.

“We always say exercise is medicine for people with neurological conditions. We know exercise helps with mobility, balance, strength and fitness. For people living with PSP & CBD, it provides a very practical way people can take action to retain their physical function.

“Exercising can mean the difference between struggling to leave home or being able to continue to visit your grandchildren at your daughter’s house. And it could mean that you can continue to live as independently as possible.

“As a Physiotherapist supporting people with neurological conditions, I know we can make a big difference to people’s daily lives. As well as supporting physical health, exercise can also have a protective impact on the brain. Many studies have indicated that the parts of the brain that control thinking and memory are larger in volume in people who exercise than in people who don’t, and studies in Parkinson’s patients have shown that higher intensity exercise slowed the progression of the disease.

“In May we launched a new programme with PSPA to offer online classes to small groups of people with PSP & CBD. All instructors are Neuro Physiotherapists with knowledge of PSP & CBD. Because the groups are small, instructors are able to give direct feedback and advice to people.

“The classes have been designed to provide maximum benefit to people living with PSP & CBD in their day-to day movement. We focus on different daily tasks such as getting dressed, getting out of the car and moving from a sitting to standing position. With every task we look at the movements needed to perform that activity and will do exercises that will support it. This enables people to maintain function even as their disease progresses.

“We know people with PSP find leaning forward difficult. So during the classes we advise on ways to move forward with confidence, and we practice repetitively so people get more efficient and happier with those movements. Through the sessions we provide a lot of tools and tips of small changes that can make a big difference in movements.

“These sessions are about removing as many barriers as possible to exercise. People don’t need to travel, they can do it from the comfort of their own chair, and they are secure in that the course has been designed around them, their condition and their needs. They also know there is an expert guiding them and giving advice. We make sure the exercises are manageable, while at the same time ensuring that they do push people in order to build up fitness and strength.”

Beth Shepeard- Walwyn is living with CBD and she joined the classes.

“Joining PSPA’s Online Exercise Classes has been good fun and has given me a new range of exercises to do. Previously I’d been part of a Parkinson’s exercise class, but much of what they did was not appropriate for me. The PSPA classes are much more tailored to my condition. The feedback was also helpful as the instructor could see what we were doing and help us individually with the things we were finding difficult.

“Hugh, my husband made notes during the class, and we now repeat what we do in class most days which has been helpful in improving the range of things I can do. We even took our tablet on holiday so we could join the class from Wales!”

Learn more about PSPA and the exercise classes ran in partnership with Neuro Heroes at https://www.pspassociation.org.uk/

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Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD) are two rare neuro-degenerative diseases.

They are caused by the loss of neurons in certain parts of the brain. Over time, this leads to difficulties with balance, mobility, speech, vision, swallowing and cognition.

Both conditions are life limiting. There is no treatment and no cure.

Currently, around 60% of people living with either disease, are initially misdiagnosed with other conditions including Parkinson’s, stroke and depression.

PSPA is the only UK charity dedicated to creating a better future for everyone affected by PSP & CBD.

We will do this by:

• Providing information and support to enable families living with PSP & CBD to live their best possible lives

• Improving the quality of life for people living with the condition via research and awareness raising

• Putting the voice of the PSP & CBD community at the heart of what we do.

For more information please visit www.pspassociation.org.uk

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