Vital help for those living with MS

Eight out of ten people living with multiple Sclerosis (MS), a disorder of the central nervous system, do not meet the WHO’s recommended physical activity guidelines. A new online programme funded by the New Zealand Multiple Sclerosis Research Trust is setting out to change that.

A new online programme led by AUT researcher Gilly Davy is going to be piloted thanks to two years of funding from the New Zealand Multiple Sclerosis Research Trust (NZMSRT).

The MS Get a Head Start (MSGHS) programme was developed to provide exercises and education for people with MS. Since 2013, it has been used in clinical settings for people living with MS in both individual and group therapy.

Now the programme is expanding to a six-week fully online course as part of Davy’s project, entitled ‘The effect of online delivery of the MS-Get-a-Head-Start programme on physical activity self-efficacy of people with Multiple Sclerosis: a randomised pilot trial’.

Davy is “incredibly grateful” to the NZMSRT, without which she wouldn’t have been able to work on the research.

"The funding has enabled professional filming of the exercise and education sessions and development of the website to ensure the programme is of a high standard,” she says.

“It’s also helped ensure I’m not penalised financially after I had to drop a day from my full-time work as a clinical neurological physiotherapist to be able to study.”

MS is the most common non-traumatic disabling neurological condition in young adults worldwide, with greater than 4500 people living with it in New Zealand.

In addition, three times as many women are diagnosed as men, and it is a disease of young people with the average age at diagnosis in the early 30s.

Davy has been a neurological physiotherapist for 20 years and has seen a step forward in the treatment of MS, including several highly effective medications that can reduce MS progression and symptom burden – although there is still no cure.

“There has been an outstanding amount of research into exercise and MS, with proof that exercise can reduce symptom burden, increase function, and potentially slow disease progression alongside all the other benefits of participating in regular exercise,” she says.

Despite this, 80% of people living with MS do not meet the World Health Organisation’s recommended physical activity guidelines.

“When someone is diagnosed with MS they already have central nervous system changes which affect their ability to participate in physical activity,” says Davy. “There are very limited accurate resources available for people with MS and this spurred me onto developing MSGHS.”

Offering the course online should significantly increase access to the information, with Davy aware that equal access to such resources in Aotearoa is still limited.

“With COVID-19 successfully demonstrating the role of online health care delivery, I want to see if delivering the MSGHS programme as an automated programme with no therapist interaction could improve physical activity confidence levels for people with MS.”

Participants in the study will receive a weekly email containing two exercise videos of approximately 45-60 minutes and an education video of approximately 30-45 minutes. There is an additional piece of coursework which takes 30 minutes per week.

Specific equipment isn’t required either, with only a sturdy chair and an exercise mat or towel to use on the floor needed. A workbook is supplied that contains all the supporting educational material for the programme.

The six educational topics cover a range of MS symptoms and practical management strategies:

• Fatigue management
• Exercise prescription
• Pain management
• Cognitive and psychological well-being
• Multi-disciplinary services and
• “Where to from here"

Eventually, Davy hopes the programme will be available nationally for those living with MS to increase their knowledge and understanding of how to safely and effectively exercise while living with the disease.

NZMSRT Trustee Neil Woodhams is delighted they have been able to support Davy’s important work.

“The Trust recognises that many clinicians see research as an important part of their practice and wants to ensure they have access to research funding to attract and retain them to work in NZ rather than going overseas where research funding is more readily available,” he says.

“As well as an appropriate drug regime (if available), maintaining muscle strength and fitness are an especially important part of living well with MS.

“Gilly is a specialist neurological physiotherapist with an interest in MS. Her online MSGHS programme is not only for people with MS but also for other physios and exercise specialists to develop their skills professionally so people with MS are able to benefit from best practice exercises,” he continues.

“We hope the research will demonstrate that people who use Gilly’s programme do better physically and mentally than those in the control group who don’t.”