Focus on: Exercise and Prader-Willi, information for gyms and trainers

Why is exercise important for people with Prader-Willi syndrome (PWS)?

Physical activity can provide a number of benefits to people living with PWS, including management of common symptoms such as obesity, reduced muscle tone and anxiety. A particularly important aspect of PWS that an individualised exercise plan can assist with is balancing the amount of energy in (eating) with the amount of energy out (exercise).

Reduced muscle tone is often a symptom of PWS. This can occur across a wide range of severity, so not all individuals with PWS will experience this to the same extent. Lower muscle tone can affect coordination and balance and result in generalised weakness. Exercise is an effective way of improving muscle tone, which is associated with general improvements in strength and energy levels.

Daily exercise in people with PWS can help maintain a healthy weight and improve physical strength and overall health. 30 minutes of physical activity each day is the recommended average. This can improve health and well-being, and is especially important for people with PWS for the management of their weight and improving muscle tone.

What are common difficulties people with PWS may face with exercise programs?

People living with PWS can face some additional challenges which should be considered when designing an exercise program. For example, they may have low muscle tone which can contribute to poor coordination, balance and strength. This can often be couple with the physical strain of obesity and the common symptom of scoliosis, which is an abnormal curvature of the spine. Scoliosis occurs in approximately 45% of people who have PWS, and can have negative effects on flexibility, strength and posture.

Children with PWS may also have behavioural difficulties. These can include anxiety, a tendency to lose interest quickly, difficulties in adapting to change, emotional outbursts and mood swings. A preoccupation with food and acquiring the next meal may distract the person from engaging with the activity. These difficulties can further deter people with PWS from participating in physical exercises. However a well-tailored exercise regime which meets the needs of people living with PWS can be an important aspect in encouraging a healthy lifestyle.

What should be considered when tailoring an exercise program fro someone with PWS?

As the syndrome is characterised by a broad spectrum of symptoms, the abilities of different people with PWS may differ. Generally, people living with PWS have reduced muscle strength, power and mass. This may also impact reaction-time, speed and coordination.

Participation in a wide-range of exercises that engage all muscle groups is an effective way to manage weight gain. For people with PWS, resistance and weight bearing activities can be effective at improving muscle tone. Lifting light weights, using stationary machines such as a bicycle or rowing machine, and activities involving jumping or throwing can all be suitable. However, those with scoliosis may be at increased risk of injury or find weight bearing exercises particularly difficult. The person's physician should be consulted for advice if there are any concerns.

Moderate aerobic exercises are helpful in losing, as well as maintaining weight. Walking, jogging, cycling and any other activities that produce a mild increase in heart rate and breathing can be useful activities for most people with PWS. People living with PWS may be at particularly high risk of sprains and joint pain from high impact activities such as running and jumping at a high intensity. In addition, aerobic capacity may be lower in people with PWS, reducing the time for which aerobic exercises can be comfortably maintained. Care should therefore be taken to begin training programs at a light intensity, and built up according to personal progress.

Suggested conversations for a trainer, parent and person with PWS when developing an exercise plan

Personal trainers and gyms can be a great asset in planning and implementing any fitness plan. Communication is the most important aspect of creating an individualised training program for a person who has PWS. Everyone has different abilities and enjoys different things, so having a mutual understanding of this can improve the experience. For any items of medical concern, the person's doctor may also need to be consulted.

We recommend the trainer or gym, the person who has PWS and their parent or carer discuss the questions below to ensure the program is designed in a way that best suits the individual and that there is transparency in the complex needs of the person with PWS:

  • What PWS symptoms should I be aware of?
  • Is task-switching an issue? If so, are there any techniques you have found useful for this?
  • What kind of activities does the person enjoy most?
  • Are there any kinds of activities that the person finds particularly difficult
  • Are there certain times of the day when the person tends to be happiest or more readily engaged?
  • Is there anything in particular that calms the person down if they become distressed?
  • What techniques do you find most useful in giving instructions?
  • Is routine favoured over variety? As the person progresses and improves with training, what is the best way to introduce changes to the training program?
  • What are the benefits of exercise you'd most like to see? (e.g. weight loss, weight maintenance, strength building, improved muscle tone, social benefits etc).

How can exercise programs be designed to be accessible and enjoyable for people with PWS?

It is important to gain an understanding of common difficulties faced by people with PWS. Starting slowly and gently can be an effective way to engage a person with PWS in physical exercise. Intensity of exercise can then slowly be increased as muscle tone, confidence and enjoyment builds. Everyone has different interests, so communicating with the person on which activities they enjoy most can encourage enthusiasm.

People with PWS may have difficulty adapting to change or following complex instructions. Exercise training programs should aim to be well-defined, easy to accomplish (as per individual abilities) and broken down into small steps. For some people who have PWS, it may be beneficial to follow a planned routine they can become familiar and comfortable with, which further minimises the stress related to anticipation. However, it is also important to be flexible and willing to adapt.

Incorporating strength training and aerobic exercises with games can be helpful in engaging children with PWS. Throwing, catching, skipping and dancing within or between exercises can be a simple way of keeping things entertaining.

Devising a training program that suits the individual abilities and interests of the person is the best way to build confidence and therefore decrease any aversion to exercise. Showing patience and enthusiasm while explaining exercises in a clear and simple step-by-step manner can make activities less stressful. Active communication and mutual respect between the person who has PWS, the parent and trainer is an important aspect of achieving this.

This post was written by four University of Melbourne science communication students, Jessica, Jinia, Elena and Frances. Each is a Masters-level research active science student and undertook this work under the guidance of their course coordinator Dr Jenny Martin and our volunteer director of science communication Melanie Carew. You can read more about the University of Melbourne Science Communication subject here.