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:phoca_thumb_s_Chevillere-thuasne

phoca_thumb_s_Orthese-mcdavid

  • 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


phoca_thumb_m_Walker(Rupiani)phoca_thumb_m_Deambulateur-enfant(Movita)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.

phoca_thumb_l_maya-lcdconceptThus, 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.



phoca_thumb_m_Fauteuilk450vgb-permobilThe 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:

Fauteuil électrique Whing Par l'AFM-Téléthon et DRK
  • 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


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.

L' AT, c'est quoi?

L'ataxie télangiectasie (AT) est une maladie rare, neurodégénérative et immunodépressive, maladie héréditaire qui affecte de nombreuses parties du corps et provoque de graves incapacités... SUITE

La recherche

La recherche sur le gène ATM en France et dans le monde. Comment combattre une maladie comme l'ataxie télangiectasie? Les projets scientifiques d'AT Europe.

Carte des soignants

La carte de tous les soignants proches de l'AT en France (DOM-TOM compris), avec les centres de compétences de nos réseaux partenaires CEREDIH et NEUROGENE et les soignants, médecins et paramédicaux, indiqués par les familles.

Agenda

 
1km parcouru sur un tapis=1€! (pendant 2 jours en 2015)
Pour les Foulées du Tertre depuis 2012!
1€ par contrat de vente en 2015 (>1000)!
Sur l'Etape du Tour 2014!
Sur la course Vertigo en 2013 et 2014!
Sur la course Vertigo en 2013 et 2014!

Organisez votre évènement!

Sports

Fêtes et spectacles

Stands et ventes

Règles et conseils

Réseau ATEurope

         
 
Forgot Login?   Sign up  

Etudes ouvertes aux familles

CEREDIH

La base de données française tenue par le CEREDIH, partenaire privilégié d'ATEurope, renferme probablement les données médicales les plus complètes au monde et toutes les mutations génétiques des personnes françaises atteintes d'AT. Parlez-en à vos médecins!

La base de données française

CURIE

Dans le cadre de la recherche d'un lien entre cancer du sein et gène ATM, l'étude CoF-AT de l'institut Curie rassemble des données sur les femmes hétérozygotes pour ce gène, c'est-à-dire porteuses saines d'une copie déficiente du gène comme peuvent l'être les mamans des enfants atteints d'AT et d'autres membres de leur famille. Faites-vous connaître!

Étude CoF-AT
de
l'institut Curie

Global AT family data project

ATCP aux USA vient de mettre en place une base de données mondiale liée à l'AT. Complémentaire de celle du CEREDIH, elle permet aux familles concernées de transmettre des données qui n'étaient pas recueillies jusque là, comme les imageries de type IRM ou scanner ou des informations liées aux aptitudes, au comportement ou encore à l'alimentation, etc. Parallèlement, un programme de recueil de 500 génomes complets est mis en place. Vous pouvez participer!

La base mondiale des autres données

Copyright © 2024 ATEurope. All Rights Reserved.
Joomla! is Free Software released under the GNU General Public License.