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Supporting people affected by Charcot-Marie-Tooth disease.

Balance and Falls

The main muscles that affect our balance when standing are the calf muscles. They hold the ankle joint still and stable. If your calf muscles are weak, you may find that you have problems standing still and move your knees a lot to keep stable.

When walking, the main problem that leads to falls is tripping over dropped feet. Foot drop happens when the muscles at the front of the shin are weak.

In some people with CMT, the muscle that runs down the outside of the calf (peroneus longus) is weak. It is responsible for pulling your foot out and if it weakens, your foot can ‘turn in’ at the ankle. Seen from behind, it looks as though you are walking on the outside edge of your foot. This can cause instability (the ‘wobble board’ feeling), balance problems and also pain and calluses.

If weak ankles are combined with some loss of sensation in the foot, this makes balance much harder. This is because as well as depending on the stability of the ankle to keep balanced, the body also relies on sensory information from the foot. Without this sensory information, it takes the body longer to recognise that you are about to topple over, slowing your reaction to losing your balance.

Poor balance can lead to trips and falls which in turn can cause ankle sprains and other falls-related injuries.

There are various ways to reduce the chance of falls including:

  • orthoses
  • occupational therapy (including handholds, assessment of your house and walking aids)
  • balance training
  • surgery
Orthoses to support the ankles and improve balance

Some people feel more balanced and can walk better if the arches of their feet are propped up, and/or the feet are re-aligned with wedges. There are light braces that can reduce the risk of tripping if you have foot drop.

If you are unable to stand still because of calf weakness, it may be appropriate to try rigid ankle foot orthoses to support and stabilise your weak ankles. Consider temporary orthoses or plaster casts to see how you manage before trying this option. It can initially feel very strange, but can have many benefits. Many people are put off by the look of these orthoses as they are bulky and often require bigger shoes. However, it is worth considering what they do to the appearance of walking: this can often be far more normal and have a bigger impact than the appearance of the orthoses themselves.

By addressing problems at the ankle, it is often possible to improve alignment and improve your strength at the knees, hips and trunk. This is an area where it can be very useful to combine use of orthoses with physiotherapy.

Falls

CMT can increase the chance of your tripping and falling. If you are inactive because you are recovering from a fall, or are nervous about falling again, you will lose stamina and strength. Although you should be able to recover this once you are up and about again, it will take time and effort. There’s a risk of a vicious cycle developing: any loss of stamina or strength will mean you are less likely to keep active, leading to more loss of stamina and strength. And so on.

Most falls in people with CMT occur in their own homes. This may be because people pay less attention to threats to balance whilst at home. It may also be because people remove their supportive shoes and braces.

Think about your footwear and try to clear any trip hazards from your home. Taking particular care on uneven ground can all help you avoid falls.

The falls prevention action plan
  • Take regular exercise, even if this is only a short walk, to keep muscles as strong as possible and joints supple
  • Fit easy-grip handrails on both sides of the stairs. Avoid/minimise climbing stairs if it makes you feel unsafe
    Keep stairs and living areas well lit. Keep a torch by the bed
  • Try to keep furniture or clutter encroaching on circulation spaces to a minimum, giving you plenty of room to manoeuvre sticks, crutches or walkers
  • Never leave objects which you can trip over, on stairs or in walking areas. Avoid flexes and cables crossing walking areas
  • Use non-slip rubber mats in the bath/shower. Fit a handrail near the bath/toilet.
    Avoid small rugs in the bathroom
  • Replace worn rugs and carpets. Nail or tape down the edge of rugs to avoid slips and trips
  • Minimise bending/climbing. Keep frequently-used items on racks or in drawers at an easy level. Have a letter tray and rack for milk deliveries fitted
  • If you must climb, use proper steps
  • Get up from chairs/beds slowly. Blood pressure falls as you get up and you may feel dizzy if you do it too quickly
  • Avoid poorly fitting shoes or slippers (talk to a podiatrist)
  • Have regular eye tests. It is now possible in many areas to have an eye test in your own home
  • Avoid clothes which may trip you, such as trailing nightdresses or long tracksuit bottoms
  • Don’t rush to answer the telephone. Warn friends that it may take you longer to reach the telephone, and if you have an answering machine, you can probably extend the number of rings before it cuts in. Have an extension socket fitted upstairs, or if you have one, carry a mobile or cordless phone with you
  • If prescribed medication is making you feel dizzy, keep taking it, but consult yourGP
  • Keep rock salt/grit handy to put on external paths in cold weather

It may also be worth having a plan for what you would do if you do fall, especially if you can’t get up unaided. You may no longer be able to kneel, but can you pull yourself up onto a low chair? If that doesn’t work, how will you raise the alarm, if you’re on your own?

Consider the following:

Subscribe to a call alarm service. There are many of them (usually run by, or registered with your local authority). They’ll provide you with a call button that you wear at all times. To summon help, you simply press the button.

If that is a step too far, consider purchasing a couple of very basic mobile phones – you can get them from places like Carphone Warehouse or Amazon for around £10? Providers like GiffGaff offer cheap call plans or pay-as-you-go calling. Position one phone by the toilet, perhaps, or in the kitchen. At the very least, have a landline phone low enough to reach if you are on the floor.

Having raised the alarm, how are you going to let in the rescuers, whether they are members of the ambulance service (which can be called out for these sorts of emergencies) or a neighbour? A keysafe is a good option. This is a small cast-iron box containing your key that is secured in an inconspicuous place near your main entrance. The box is opened with a pin number: these are low tech devices that need no electricity. You give the pin number to rescuers or friends/family/carers as required. Any good disability gadgets store or website should stock them – or ask your occupational therapist to help you get one.

Whilst it’s scary having a plan in your mind, it’s better to be prepared. It may never be needed.

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