Why is exercise so important for people with PWS?
People with PWS are born with reduced muscle tone (which affects muscle contraction), less muscle and weaker muscles than non-affected people. Strong muscles are important for good movement and the protection of joints, ligaments and tendons.
People with PWS are born with more fat cells, than non-affected people. This means it is much easier to gain fat and harder to “burn fat” through daily energy expenditure. The more muscle a person has the greater their potential for more “fat-burning” or energy expenditure.
When people are on restricted energy intake menus, as needed by people with PWS, muscle is often reduced as well as fat. People with PWS need to protect against muscle loss and this is only done through exercise.
What can exercise do for people with PWS?
Fat loss! When we exercise we use the energy stored in our body as fat and (glycogen in our muscles) from the food we eat.
Energy expenditure (metabolic rate) is naturally reduced in people with PWS, due to their reduced muscle. Exercise increases daily energy expenditure, while exercising, as well as in the post exercise period. Without exercise our metabolic rate remains at a resting level, which is lower in people with PWS
Blood flow is increased with exercise. As we exercise our heart pumps out more blood carrying oxygen to every cell in our body, including our brain cells. Alertness improves as increased levels of oxygen reach our brain, through exercise. Hands and feet become warmer when exercising as blood flow is increased. This is important in PWS as peripheral blood vessels in the arms have been seen to be smaller than in non-affected people. Increased blood flow reduces high blood pressure and exercises our heart and lungs to keep them healthy. Symptoms of sleep apnoea are improved with exercise. Lymphodema is reduced through leg exercise, as the calf muscle works to pump fluid from the cells.
Bones are protected by weight, strong muscles and exercise. It is important for people with PWS to maintain a healthy weight, but if the weight is good, mainly due to strict dietary management then bones can be at risk if the person does not have strong muscles or is not exercising regularly. Weight bearing exercise impacts on bone to increase bone density and bone strength. Strong muscles also impact on bone to increase bone density and bone strength
Mood is improved with exercise. Endorphin (happy hormones) release is increased through exercise. Not only does exercise improve the mood of people with PWS due to the increase of our “happy hormones”, it also improves their self-esteem as they accomplish the set exercise task. Regular exercise provides a period of positive structure to the day.
Exercise naturally improves the body’s sensitivity to insulin. This is very important for people with diabetes, as the increased action of the insulin will lower high blood glucose levels and improve a person’s diabetic control.
When should someone with PWS start exercise?
Exercise should be started from birth and continued throughout life.
How do people with PWS respond to exercise?
Poorly, initially. They do not like to take on anything that requires effort or anything that is new to their routine.
To be effective, the exercise needs to be regular. This is best achieved by making the exercise a part of their accepted routine. It is best if it can be done at the same time each day. Exercising before a meal or snack is good, but if the person suffers from regular constipation, or slower stomach emptying, exercising about 30 minutes after a meal will help.
Much praise is needed for effort and completion of the exercise! Praise must be genuine. They will see through false praise and likely become opposed to continuing.
Start small and increase gently. Discuss the need to increase the exercise as they become fitter.
Competitiveness can be very positive. It is much more encouraging if you join in the exercise - eg walking with your person with PWS or competing with their efforts, for example on a treadmill. Having the person with PWS compete with himself/herself to try to do “as good as” or “better than” the previous exercise session, is another way of encouraging the exercise.
Working towards a goal can be very helpful, especially to initiate a regular exercise pattern.
Perseverance is essential! That means your encouragement and support for the person with PWS to exercise must be ongoing. This can be hard, but is doable!
What is effective exercise?
Effective exercise works you! It increases your breathing rate, makes your heart beat faster and may cause sweating. By having your person with PWS walk, cycle, swim, dance or similar at an intensity that produces a “working” level they will improve their fitness, gain muscle, lose fat and have an improved mood.
What types of exercise are important for people with PWS?
Exercising specific muscle groups will strengthen muscles and increase the number of muscle fibres to build bigger muscles. These exercises can be done with weights to have a better effect on strength. They are repetitive movements of the muscle. As the muscle becomes stronger the number of repetitions is increased.
To improve the fitness of our heart and lungs as well as “burn” fat, exercise must be of an aerobic nature. When exercising aerobically we take in more oxygen and use large muscle groups, usually involving the whole body for a continual movement. Examples of aerobic exercise are walking or dancing or swimming or cycling.
How to start
It is important to match the exercise to the person’s own ability and current level of physical activity.
If your person with PWS is doing no exercise and you know they are hard to motivate, start slowly! Talk with them about the idea of starting an exercise regime to make them strong and improve their fitness. It also helps to offer an incentive or some competition. For example, you might suggest to them that you also want to “get fit”. “Let’s see if I can keep up with you when you exercise!”
Suggesting an appropriate reward may also help get them motivated. “If you can cycle for 10 minutes on 3 days each week”, or “if you can walk (swim/dance/row/cycle) for 10 minutes 5 days per week”, you may have a can of diet drink on Saturday . It is important to have someone “supervise” or join them in the exercise. You, or someone else, could tell them you (or someone else) also wants to get fit and will join them to see who can do the best.
When initiating an exercise program for someone who is not particularly active they may start by exercising for 10-15 minutes 3 times per week, then increase the time up to 30-60 minutes, 5 days per week.
Other examples of aerobic exercise include: treadmill walking, rowing, gym circuit classes, skating, roller-blading, horse riding.
When a person with PWS is exercising regularly and effectively they may reach a stage where extra energy intake is indicated. One additional serve of low fat protein can be included in their regular, restricted food intake. For example, 1 extra slice of lean meat or chicken could be added to their usual lunchtime sandwich, if they continue to lose weight.
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