Managing Mito Webinar: Exercise and mito

Introduction and acknowledgements

• Rebecca begins the session by acknowledging the traditional owners of the land and the traditional owners of various lands, as well as people with a lived and living experience of mito and those who love and care for them.
• Rebecca introduces herself as a senior project officer at the Mito Foundation.
• The session is on exercise and mito, with a disclaimer that the information shared is for general purposes and not personalised medical advice.
• Rebecca emphasises the importance of exercise in improving fitness, energy levels, strength, coordination, balance, and flexibility, as well as mental health and confidence.

Introduction of guest speaker Jeremey Horne

• Rebecca introduces Jeremey Horne, a clinical physiotherapist with extensive experience in rehabilitation and the development of the Parkinson’s disease wellbeing program.
• Jeremey is currently undertaking a 12-month research fellowship at Neuroscience Research Australia, funded by the Mito Foundation, to investigate the feasibility of a technology-supported structured home exercise program for people with mito.
• Jeremey’s project is under the guidance of Professor Carolyn Sue, a leader in mito research.
• Rebecca invites Jeremey to share his insights on mito and exercise, particularly his experiences over the past year working with the mito community.

Jeremey Horne’s insights on mito and exercise

• Jeremey shares his experience of working with the mito team, noting the complexity of the condition and the variability in how people with mito react to exercise.
• He emphasises the need for individualised exercise programs based on detailed assessments of specific deficits.
• Jeremey mentions his ongoing research and the use of digital health technology to monitor patients’ activity levels, heart rates, and other physiological measures.
• He discusses the challenges of motivation and energy levels in people with mito, noting that improvements in fitness tend to be slower due to limited energy production.

Details of Jeremey’s research study

• Jeremey explains the study’s focus on the feasibility of using digital health technology to monitor patients remotely, using a watch to track activity levels, heart rates, and other metrics.
• The study involved 10 patients, with some preferring hard copy exercise programs and others using video exercise apps.
• Jeremey highlights the importance of regular face-to-face meetings with exercise physiologists or physiotherapists to monitor progress, motivate patients, and adjust exercise programs.
• He notes a significant drop-off in exercise adherence after the first 4 weeks, emphasising the need for goal setting and consistent monitoring.

Differences between physical activity and exercise

• Rebecca asks about the difference between physical activity and exercise, with Jeremey explaining that physical activity is any movement requiring energy expenditure, while exercise is planned, structured, and repetitive.
• Jeremey emphasises the importance of both physical activity and exercise, noting that modern life has reduced overall activity levels, making scheduled exercise essential.
• He explains the benefits of both cardiovascular and strength training exercises, noting that both are important for longevity and quality of life.
• Jeremey discusses the challenges of balancing exercise intensity and recovery, recommending close monitoring and gradual increases in exercise intensity.

Exercise recommendations for people with mito

• Jeremey provides recommendations for people with mito who use wheelchairs, suggesting upper limb exercises using elastic bands, hand weights, and arm cranks.
• He recommends exercise snacks, where short bursts of exercise are done throughout the day to avoid fatigue.
• Jeremey discusses the benefits of hydrotherapy, noting that it can be beneficial for muscle relaxation, balance, and gait problems, but it depends on individual tolerance to temperature.
• He advises using cooler pools for people with mito who have difficulty regulating body temperature.

Recovery and nutrition tips

• Rebecca asks about recovery tips, with Jeremey emphasising the importance of maintaining energy balance and consuming wholesome foods.
• He recommends eating before and after exercise to ensure the body has enough energy to recover and build tissues.
• Jeremey advises against exercising on an empty stomach and staying hydrated to avoid gastrointestinal and other health issues.
• He suggests avoiding simple sugars and focusing on natural sources of energy, such as fruits and whole grains.

Timing of exercise and final thoughts

• Rebecca asks about the best time to exercise, with Jeremey noting that the best time varies by individual and can be adjusted based on energy levels and daily activities.
• He recommends avoiding exercise right before bed to avoid stimulating the metabolism and disrupting sleep.
• Jeremey advises being consistent with exercise and finding a time that works best for each person’s schedule and energy levels.
• He concludes by encouraging people with mito to take exercise one day at a time and to remember that inactivity has a greater impact on their lives.

Resources and closing remarks

• Rebecca thanks Jeremey for his insights and introduces resources available online, including a video on children with mito and exercise.
• She mentions upcoming resources for the community and physiotherapists, which will be available on the Mito Foundation’s website.
• Rebecca thanks the participants for joining the session and expresses gratitude for Jeremey’s contributions to the mito community.
• The session concludes with a reminder of the importance of exercise and the support available from the Mito Foundation.