Spina Bifida and Sensation

Depending on how much nerve damage you have had, you may have difficulties with sensation which can sometimes, unknowingly, put you in danger. For example you may not:
  • be able to feel how hot the bath water is
  • notice that you are putting your foot by a hot radiator
  • realise that your toes have been squashed in your shoes
  • feel your calliper is rubbing
  • notice that your skin is cut or broken or even know if you have a broken a bone
As you grow up, you need to take special care to check for any cuts or bruises especially on those parts of your body which are most at risk.
 
Circulation
 
You may have poor circulation (the speed with which blood flows around the body) which can cause a problem, especially if you cannot feel or move the lower part of your body as you should. You may not realise:
  • when your blood circulation has slowed down
  • if your feet or legs are too cold
  • or pressure on your bottom or hips has stopped the blood flowing
Pressure Ulcers / Sores
 
These are very common among people who have Spina Bifida. It is very important that you check your skin when dressing. The areas most at risk are the:
  • buttocks ‘thighs’ - feet ‘elbows’ - back 
Things you can do to reduce the risk:
  • Push-ups every 15-20 minutes should relieve the pressure on the buttocks
  • If you can’t lift up, leaning forward or to the side should provide adequate relief
  • Use the pressure relieving cushion that came with your chair, and if necessary, you may have a pressure relieving mattress on your bed
  • Remember your feet! Shoes (not too tight) should be worn
  • Cotton socks without elasticated ankles
  • Wearing fashionable clothes may be ‘cool’ but try to avoid clothes with zips, press-studs or hard seams
  • Ensure the skin is kept clean and dry but avoid using talc
  • If you have a bladder or bowel accident, clean yourself up as soon as you can
  • Lift yourself away from surfaces when transferring - this avoids dragging the skin and damaging it
  • Try not to knock or drag your feet when transferring if you have limited sensation
  • Eat healthily as it keeps your skin in good condition and keeps your weight down
  • Remember your fluids too - they help to keep the skin’s elasticity
Top Tips
  • Never rest hot drinks on your lap
  • Don’t have your bed next to a radiator
  • Always check your bath water with your hands to make sure it’s not too hot
  • Don’t rest your feet on radiators/heaters
  • At the first sign of a sore, get it checked. Pressure ulcers can be hard to heal once developed and can lead to prolonged bouts of total bed rest - definitely not good for the social life

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