Tuesday, April 11, 2023, 00:16
Parkinson’s is a chronic neurodegenerative disease that affects the nervous system. This condition, which has different symptoms in each person, has no cure, although medication is used to try to minimize some of its symptoms and different therapies (physiotherapy and speech therapy, among others) in order to improve the daily life of those who suffer from it. suffer.
Improving the quality of life of its users and ensuring that they receive the therapies they need is the main function of On Off Párkinson de la Región Murcia, an association that was born in the year 2000 by a group of affected people and their families and that offers comprehensive care to its users, “which is the set of services that someone with this disease needs,” explains Miriam López, coordinator and psychologist of the association. The value of all this work has led On Off Párkinson in the Region of Murcia to be recognized by the ‘la Caixa’ Foundation, which selected it in its ‘2022 Aid Program for Social Initiatives Projects’.
The entity has a wide range of services. Individually, it offers social and psychological care, both to the user and to their relatives. These two aspects are key for those people whose degree of affectation is very high, which can lead to social isolation. “At a family level it is very hard, because you live with a person who is having many limitations,” explains the president of the association, José Andrés Luna.
For its part, speech therapy, physiotherapy, cognitive stimulation and occupational therapy, among others, are carried out in groups with similar needs, which helps to “create community”, explains Luna, an opinion shared by Miriam López, who considers “very important» the emotional part that this group work entails.
no profile
The entity, which has around 115 members, does not have a specific user profile. Every day its facilities are visited by both people who have developed the disease over the age of 60 and individuals with what is known as early-onset Parkinson’s, which is when it begins to show up in much younger patients. The presence of this last type of user is a sample of the advances in the detection of the disease and a confirmation of the value of the service of these associations. “When I started working here, it was unthinkable that there would be such young people,” recalls the coordinator, who points out that the causes of this change are greater awareness both among some neurologists and among people, “who are aware that when they diagnose a disease, regardless of how old you are, you have to do something to be well. Our objective is that they know that if they are physically and mentally active since the diagnosis, their evolution will be better than that of the one who comes when they know it for 10 or 15 years.
The entity has social and psychological care, physiotherapy, cognitive stimulation and speech therapy, among other therapies
This increase in demand has also had another consequence, which is one of the main claims of On Off Párkinson in the Region of Murcia. Their facilities, ceded by the City Council, are already too small for them, so they ask for larger ones that help them increase their range of action. “It is the whiting that bites its tail,” laments Luna. “If we don’t have space, we can’t treat more affected people, and if we can’t treat more affected people, we can’t grow as an association and provide a better service,” she remarks.
more visible
To achieve this boost as an association, Miriam López and José Andrés also consider it essential that Parkinson’s is more visible in society. “To be the second disease with the highest incidence after Alzheimer’s, society does not know about it, there are no campaigns at the national or regional level,” these professionals indicate.
For this reason, and on the occasion of World Parkinson’s Day, the entity has organized a series of activities that focus on this disease and make it more visible to society. In this sense, they will present the actions scheduled next Monday the 17th at the Real Casino de Murcia; they will distribute explanatory brochures in health centers (April 18 and 19); information tables will be set up in hospital spaces such as La Arrixaca, Reina Sofía, Morales Meseguer and the Hospital de Cieza (Thursday, April 20); and, among other performances, they will participate in the ‘Run for Párkinson 2023’ race, organized by Fepamur.
Constant support to associations
The On Off Párkinson comprehensive care project in the Region of Murcia was one of the 38 successful projects that were selected last year in the ‘Aid Program for Social Initiatives Projects 2022’. The call, which subsidized its comprehensive care initiative with 17,100 euros, distributed a total of more than one million euros, double that of the previous year, to promote action in the third sector and help 14,815 people in vulnerable situations. Between 1999 and 2022, ‘la Caixa’ Foundation has promoted 638 projects in the Region, through which 241,300 people have been served, with a total investment of more than 12.9 million euros.
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