The doctor of physical medicine and rehabilitation (PMR) is the one who will coordinate the different specialties in this chapter with the objectives for the patient with ataxia telangiectasia to:
- maintain or improve functions or, failing that, try to slow the functional effects of progressive degenerative condition
- promote independence
- improve the quality of life
Under the terms of the charter of PMR, his action-oriented ethic respects the interest of the patient by the issuance of appropriate informations to enable the latter to make an informed choice.
The doctor of PMR in the center of the follow-up
If the medical follow-up, that is to say concerning the causes and consequences of the pathology, is carried out by the doctors whose specialties are described in the previous tab Si le suivi médical pur, c'est-à-dire concernant les causes et les conséquences de la pathologie, est effectué par les médecins dont les spécialités sont décrites dans l'onglet précédent (Suivi médical), the taking over of the daily lives of patients with ataxia Telangiectasia is partly the responsibility of the doctor of PMR.
Depending on the needs of the patient and with his agreement, he will offer him an overall care to optimize the maintenance of his functions and material adaptations to maintain his quality of life in his everyday environment. This project is developed from a consultation, from the dialog with the other physicians taking care of the person with ataxia telangiectasia and opinions of the multidisciplinary paramedical team around him. It is a long term follow-up and is adaptated according to changes in the patient but also to the available resources . This makes the PMR doctor a very good connoisseur of the patient with AT as he is the only one to follow his behaviour changing in his environment, especially by the reports of professionals in the paramedical team frequently involved with the patient.
The PMR doctor: a team leader
Besides the fact that he can of course have a private office, the PMR doctor is very often a coordinator of a paramedical staff in specialized centers of care (such as CAMSP or SESSAD in France).
Indeed, he has the pointed knowledge each of the re-education specialities and of the advantages that can be expected in the treatment of a patient.
He transmits, gathers and exchanges all useful information on material novelties and new therapeutic methods.
Having moreover the knowledge of the medical record of each patient, it is able to decide what are going to be the actions to focus on and which specialities are going to intervene to balance them in the daily of the patient while handling carefully his quality of life.
To summarize, the PMR doctor is one of health and social referents that the patient with AT will consult for the problems of everyday life. He will propose solutions, adaptations, tools and skills of paramedical specialties covered in the following articles.