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On the occasion of World Parkinson's Day on April 11, the Lorquina Association of Parkinson's patients wants to make them participate in the campaign that has been launched one more year together with the Spanish Parkinson's Federation and other Associations, under the slogan PON A POSITIVE LABEL. The objective of this year is to make the disease visible, highlighting the EMOTIONAL IMPACT THAT A WRONG SOCIAL IMAGE produces in affected people.
And promote a change in the perception and stereotypes about Parkinson's. Parkinson's is commonly associated with aging, and tremor is believed to be the symptom that represents it.
However, 1 in 5 people are less than 50 years old when the disease is diagnosed and 30% do not develop a tremor. There are symptoms that from ignorance can be interpreted in a wrong and negative way and associated with situations that have nothing to do with reality, such as, for example, instability when walking or expressionlessness in the face. PON A POSITIVE LABEL aims to change the perception and stereotypes about Parkinson's, showing the reality of many people who face with optimism and positivity their vital process of living with the disease.
A message that offers society a different option to look at the person, putting a positive label. "Putting a positive label is the formula we have found to make society see how important it is that they know our reality" explains Andrés Álvarez, president of FEP and affected by Parkinson's. "Today is my day and I have decided to show myself as I am" "I know that I am unique and I feel great" "I refuse to change and stop feeling good", are some of the messages that this group launches in this campaign that is develops, under the hashtag #PonUnaEtiquetaPositiva, through social networks throughout the month of April, with special emphasis on these days around the 11th. We want to invite and encourage all people and society in general to make Parkinson's visible together and to participate on April 11 in the "virtual event" for the creation of a chain of positive labels.
All the information on this virtual action and the campaign can be found at diamundialdelparkisnon.org On the other hand, with the commemoration of World Parkinson's Day we do not want to overlook the great impact that the pandemic and confinement by Covid 19, has had on the group of affected people who have experienced a great deterioration of their symptoms at the level motor and psychological and cognitive level.
The services of the Parkinson's associations have been greatly affected and the continuity of the health crisis generates serious difficulties in the reactivation of care in the associations. That is why the Parkinson's collective, aware of the risk of continuity of care for people with Parkinson's and of the sustainability of the associations, demand that the publication by the Ministry of Health of the STRATEGY IN NEURODEGENERATIVE DISEASES approved by the System be accelerated.
Nacional de Salud on April 13, 2016 and its implementation through the Autonomous Communities, which contemplated an approach to Parkinson's disease and Parkinsonism for an improvement in patient care. The Lorquina Association of Parkinson's Patients ASLEP is no stranger to these difficulties and we make an appeal requesting the help that any state or institution can provide us so that Parkinson's disease is normalized at a social and health level. MANIFEST One more year, the Lorquina Association of Parkinson's Patients together with the Spanish Federation commemorate April 11, World Parkinson's Day, launching a message to society: PUT A POSITIVE LABEL. As usual, every year, the campaign for World Parkinson's Day wants to make visible a reality that affects more than 160,000 families living with Parkinson's in Spain, around 3,300 in the Region of Murcia.
The obstacles that affected people, our family members and our caregivers face, the difficulties for daily life and personal autonomy, also have to do with the perception of a disease associated with the aging of the person and the belief in that tremor is the symptom that most represents Parkinson's. However, Parkinson's affects younger and younger people: 1 in 5 Parkinson's diagnoses are given to people under 50 years of age, and 30% of affected people never develop tremor.
The impact on professional, family and social development of early diagnosis is a serious blow to the life process.
The fact that Parkinson's is a chronic, neurodegenerative and disabling disease according to its stages of evolution, means that the personal life plan has to be rethought to face and live with Parkinson's disease. That is why the "Put a positive label" campaign aims to change the perception and stereotypes about Parkinson's, showing the reality of many people who face their life process with optimism and positivity, living with the disease.
A message that offers society a different option to look at the person by putting a positive label.
So today we encourage you all to join the chain of positive labels. This year's commemoration cannot ignore the impact that the Covid-19 pandemic is having for our group: people with Parkinson's and our families have faced an unprecedented health crisis that has led to the interruption of consultations neurology and rehabilitative therapies.
As a result of the above, many people with Parkinson's are experiencing a serious deterioration of their symptoms, both motor and psychological and cognitive level. The same with regard to the serious social and economic crisis that Parkinson's associations are suffering.
The impact of the Covid-19 has caused that all the services offered by the associations have been significantly affected.
This prolonged situation in time is generating serious difficulties for the reactivation of the services offered by the associations, both with regard to individual care and group activities. Five years ago, the SNS Strategy for Neurodegenerative Diseases was approved, which included an approach to Parkinson's disease and Parkinsonism.
This document is pending publication by the Ministry of Health and its subsequent implementation by the Autonomous Communities. We believe that it is time to act so that there is a priority space for Parkinson's disease within the political and institutional agenda That the document on the Approach to Parkinson's disease and Parkinsonism contemplated in the National Strategy for Neurodegenerative Diseases is published. That it is committed to the implementation of the Approach in the Autonomous Communities, allocating the necessary resources and financing, with the aim of ensuring effective, equitable and equitable social and health care for people with Parkinson's disease. Today we not only want to promote positive labels, we want to promote action, giving Parkinson's the position it deserves on the political agenda.
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Source: ASLEP
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