Keeping to a healthy weight can be a challenge if you have restricted mobility, but is important for your long-term health and independence. Eating a good diet, low in sugar, salt and saturated fat, and rich in vegetables, fruit, whole grains and beans, can reduce the chances of developing diabetes and high blood pressure, and make it easier to keep your appetite (and weight) under control.
Try to maintain a healthy weight. If you have short stature or curvature of your spine, you can use your arm span measurement instead of height for working out your BMI.
If you have reduced muscle bulk because of your spina bifida, you will need substantially fewer calories as muscles use calories even at rest. Some people who are wheelchair users may need half the calories of the average person even at the same activity level. People who have mobility issues will also need fewer calories.
A small plate may help you eat less. Eat plenty of vegetables, frozen is fine. Your meat or fish portion should only be the size of a pack of cards. Don’t keep a stock of high fat or sugary foods at home; if you really want something, go out and buy just one. Cut out sugar where you can, including fruit juices from concentrate.
If other people prepare your meals, let them know how you’d like your food cooked, for example, if you want it grilled rather than fried. Cook in batches and freeze portions of food; this is better for you than ready meals.
If you build up muscle this may help with your weight. Seek advice from fitness trainers especially those who work with people with mobility issues so that you are protecting your bones and joints.
Exercise every day if you can. Try to find a gym with wheelchair-friendly training and equipment. You can buy DVDs for exercises you can do sitting down from online shops like Amazon, so you can exercise at home.
Calories from alcohol can only be stored as fat, so have more days when you don’t drink than when you do. As well as excess alcohol being bad for your mental health, too much booze can make weight control harder, and it can speed up bone thinning (osteoporosis).
In the UK around 50% of white people and 90% of people of colour are deficient in Vitamin D. Make sure you keep your Vitamin D levels up during the dark winter months. Vitamin D is essential for keeping bones strong and may help to prevent depression and heart disease. 90% of Vitamin D is made by the skin when the sun shines on it. However from October to April the sun is not strong enough in the UK to produce this effect. People with spina bifida, who find it hard to get outdoors every day, may be at particular risk of deficiency.
Top up your intake with oily fish and fortified foods such as dairy products and cereals. When the weather is warmer, try to get out for half an hour a day avoiding strong midday sun and getting burnt. Ask your GP to check your Vitamin D levels. If you have kidney impairment you may need a prescription for active Vitamin D.
Messages from the body about your environment are carried to the brain via the spinal cord; we are only aware of what is happening when the message reaches the brain. If your spinal cord is damaged and you have loss of feeling in some parts of your body, you need to get this information in other ways. For example, are you hot or cold, is your chair comfortable, are your shoes comfortable, are you sitting on something hot like a radiator or a hot water bottle? Check with your hand that your bath or shower is not too hot before putting your feet in. Never have your bed next to the radiator, or sleep with a hot water bottle in the bed.
It is important to ensure that you are not constipated and your stools are firm and brown. If you experience hard stools, or ‘go’ less than every three days, you should see your GP.
An overloaded bowel can result in kidney damage, UTIs, and can cause the bowel to become obstructed - a life-threatening emergency. Episodes of ‘overflow’ (bouts of uncontrollable, explosive ‘diarrhoea’) is caused by chronic overloading and is treated by clearing out the bowel. Good diet, irrigation systems/washouts and laxatives prescribed by your doctor can help.
People with spina bifida may be more prone to chest or breathing problems if their spine is curved, as this can stop the chest expanding fully during breathing. It is important to avoid flu and pneumonia if possible. Speak to your GP about an injection to guard against pneumonia, and get a flu jab each autumn.
Spina bifida may result in a gap in the diaphragm (a sheet of tissue between the chest and abdomen that controls breathing). This allows part of the stomach to rise into the chest, and squash the lungs. If you have shortness of breath and/or persistent vomiting, see your GP as it may be caused by a diaphragmatic hernia.
