The speed of neurological deterioration in ataxia telangiectasia is like all the other symptoms depending on patients: if for most, walking is acquired at the normal age, the nature and occurrence of disruptive actions, of rigidities or blockages doesn't seem to obey any specific rule.

But once these are in place, it is futile to try to correct them without causing unnecessary suffering.

However, the role of professionals is to maintain skills and independence in the movement as long as possible. To achieve this, they have many materials to meet a psychologically important criterion: independence in mobility.

Feet and ankles

The use of specific equipment on the feet and ankles should meet in three critirias:

• Improve comfort
• Improve stability and posture
• Slow the progression of the deformity

Can be used:

• Soles that can in some cases improve the stability
• The ankle brace, slowing the amplitude of the ankle without restricting it, can also improve the stability
• Orthoses, more stringent, will restrict the amplitude of the ankle, preventing unwanted movements and improving stability. They can also delay the installation of the deformation. There is no requirement to keep them full-time because they are not necessarily comfortable at rest. It depends on the purpose.

Simple ankle boots, or even boots, can bring some benefits of braces and are more aesthetic, which is a criterion not to be neglected for your child.

pay attention however that the soles of shoes are not too adherent because they won't forgive the slightest unbalance. Example: basketball shoes. Paradoxically, a smooth sole leads to be more vigilant and forgives more walking errors.

In all cases, it is your experience and your child who will decide whether such equipment is useful or not. Then you must try!

Walker

When the number of falls increases or the impact of fatigue on his activities due to his moves is too large, the use of a walking aid may restore the independence of the child.

The use of the type of products shown on the left can protect against the back and sides falls. Some walkers, as the one on the right, offer lateral support of the body and seat. The choice depends on the difficulty level of the child. The catalog of products offered is rich enough to find a solution for every case.

Assisted mobility

Always consider a material as an integration tool: acting in the travel difficulties of the child, these tools allow him to remain integrated in the community.

Thus, when the walker is no longer sufficient and the level of fatigue due to his travel becomes too high during long trips, for example, consider switching to the use of a rolling equipment: a stroller, a carrier seat or a wheelchair. Contrary to popular belief, the transition to a wheelchair or an equivalent increases the independence of the child and has no influence on the development of ataxia telangiectasia: it does not aggravate the symptoms.

The transition to a motorized solution must be considered depending on the weight of the person and on the degree but moreover the need for autonomy which increases with age. However, the cost of such equipment is sometimes deterrent, even if some financial aid may be available. One can also look at the used materials, including on the Internet, but then the difficulty is to find the suitable options. It is therefore important to define precisely the requirements before making a choice to avoid paying unnecessary functions.

The criteria for selection of material must of course be viewed with professionals: physical medecine, occupationnal therapist et physiotherapist. Must be considered:

• First, the opinion of the child
• comfort
• easy installation
• deportment in the equipement
• usability: ease of use for himself and his entourage and transportation possibilities
• adapting the device to the environment and activities of the patient: home, school, work. For example, some electrical wheelchair are able to take the stairs.

Again, the choice is vast and the images (links) of this section are only examples. You will find a comprehensive choice on more specialized sites.

 

In conclusion, there is not only one right way to move, but one for each situation: we must let the child decide because his decision is his independence. Children are pragmatic and take what make them autonomous. They generally accept the wheelchair much better than those around them. That is why we must not delay the implementation of these tools, pending the future and the development of exoskeletons.

 

The future

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With improved battery life and power of electric motors, the first models of exoskeletons emerge and are gradually marketed, in Japan first, the world leader in robotics.

An exoskeleton is a kind of combination, robotics or not, close to the body, which provides physical assistance for movement.

The first models are intended for the army, the industry and assistance of medical personnel in hospitals and medical centers, to carry patients more easily and facilitate their transfers. But the final target and clearly exposed by the Japanese is the population of senior citizens whose abilities decline with age.

If it is not unusual that the first applications are targeting significant business opportunities, the improvement of these exoskeletons and a wider distribution, inevitably resulting in price reductions, will certainly make them available for handicap people, with hope to give them real autonomy of movement, and why not return to standing and walking. The first products will also soon be available, such as these models: ReWalk company Argo Medical Technologies , Berkeley Bionics or HAL from Cyberdyne . Rewalk de la société Argo Medical Technologies , Berkeley Bionics ou encore HAL de Cyberdyne.