Our useful tips below will help you to keep mobile for longer by taking precautions to make sure your body and joints are in the best possible shape. We’ve also included some advice for what to do if you begin to experience problems.
Make sure you have a good fitting wheelchair which is appropriate for your needs and a good cushion. Seek advice from the local wheelchair service and, if you are buying a wheelchair using the voucher system, go to a good supplier who can advise you regarding what chair will suit you best. Take time researching all the options open to you. What size wheels to have front and back? Is the seat at the correct height in relation to the wheels so that you use the least effort to push yourself?
If you develop pins and needles, or weakness in your hands, you may need to consider a power chair for all or part of the time, as repetitive use such as propelling a manual wheelchair can cause damage over time to the neck and shoulders. Keeping these in good condition can keep your hands moving and keep you independent.
Ask for a physiotherapy assessment to make sure you are propelling effectively, and to ensure you are maintaining a good posture. Consider push handles on your wheelchair so that someone else can help you push at least some of the time saving your joints.
If you use a power chair and have numbness in your hand or fingers, speak to your GP as you could have a compression of the ulnar nerve in your elbow which can be relieved with support.
If you use crutches, ensure that they are fixed length rather than adjustable height as this will take strain away from your joints. If you feel a stick or other mobility aid would be a help, ask for an assessment to make sure you get the most suitable type, correctly measured, for you.
If you have one leg longer than the other, consider a shoe raise so that you do not put extra strain on your hips and knees. Ask your GP to refer you to an Orthotist. If you have been recommended splints, use them when you walk to avoid extra strain on your joints.
Some people who have the option find it useful to vary their method of mobility using a walking aid or a wheelchair depending upon the circumstances. This will vary the strain on muscles and joints. People who have never used a wheelchair may consider it worth using one some of the time for long distances. This could preserve your ability to walk by putting less strain on your back.
Do not put extra strain on your back by lifting heavy or awkward weights. Make sure you exercise and keep moving to keep yourself supple.
Tethered cord occurs when the spinal cord becomes attached to the bottom of the spinal column. Normally the spinal cord moves freely up the spinal column as you grow. A tethered cord does not move as it is pulled tight. Blood flow can be reduced and ‘wear and tear’ damage to the spinal cord and nerves can occur over time which can reduce mobility.
If you notice that your mobility is reducing due to increasing muscle weakness then ask your GP to refer you to a neurosurgeon.
If you have pain, seek medical advice rather than self-medicate; there are different pain treatments depending on the type of pain you have. New symptoms should always be looked at, so see your GP in the first instance. Sometimes the cause of the pain is treatable, but sometimes it isn’t; worrying about why you have pain can make it feel worse.
If the pain continues, ask your GP to refer you to a pain clinic, where many complementary treatments are often available as well as medication. If you have any kidney problems, make sure your doctor is aware before writing your prescription; you can check with the pharmacist as well when you collect the medicines.
Our bones grow during childhood and increase their density and strength in adult life. Weight bearing exercise, such as walking or skipping, helps this to happen. Osteoporosis is a thinning and weakening of the bones, which can lead to the bones breaking very easily. People with spina bifida who do not weight bear may be prone to osteoporosis.
Try to prevent osteoporosis by having a good diet including calcium and vitamin D (found in milk, eggs and oily fish) and weight bear everyday if you can do so safely. Ask your GP to consider a bone density check, especially if you are immobile, or a woman who has been through the menopause.
