Parkinson's is largely unknown to the vast majority. When thinking about this disease, the first image that comes to mind is that of people affected by tremors. This is one of the symptoms it causes, but not the only one. Less known are others such as loss of smell, constipation, violent night terrors, sleep problems, depression, anxiety, or memory failures. With the arrival of more than 4,000 patients, family members, and caregivers in July, for the sixth edition of the World Parkinson Congress, the city is preparing to give them a warm welcome and understand their needs, in addition to advancing the public's knowledge of the pathology, key for an early diagnosis that can help find new therapies.
Coinciding with World Parkinson's Day, the World Parkinson Coalition (WPC) and the Associació Catalana per al Parkinson, with the support of Turisme de Barcelona, launched this Tuesday an innovative program that will train 2,000 professionals for the first time the World Parkinson Congress will be held in the city. The focus will be on workers who will receive the congress attendees, which will be held from July 4 to 7 at the Centre de Convencions Internacional de Barcelona (CCIB), giving courses to public transport workers, taxi drivers, hotel staff, local police, or CCIB and Barcelona Airport staff. Employees of the Cruïlla Festival, which will take place on the same dates very close to the congress, will also be included.
"We want to avoid complex situations or misunderstandings that often happen," explains the president of the Associació Catalana per al Parkinson, Roser Roigé. For example, this neurodegenerative disorder can cause motor blocks in everyday situations such as waiting in a supermarket queue or crossing a traffic light, which can lead to clashes with others and add distress to patients. "Parkinson's is complicated and often misunderstood, so accessibility problems and a lack of awareness of the disease by local staff can present an infinity of problems that act as generators of additional stress for those living with it," remarks the executive director of the World Parkinson Coalition, Elizabeth Pollard.
The 2,000 professionals who will be trained will be offered short courses, both theoretical and practical, providing useful tools to better understand Parkinson's. They will be organized throughout April, May, and June, the months leading up to the congress. The courses will include specific elements for the different groups that will participate. The knowledge about the pathology that the program will provide will be the legacy that the congress will leave in the city, the organizers emphasize, one of the objectives sought by Turisme de Barcelona, through the Barcelona Convention Bureau, with the attraction of international events.
In Catalonia alone, more than 29,000 people suffer from Parkinson's, a figure that rises to 160,000 in the rest of Spain. It is a pathology whose cause is unknown and that usually appears from 60 to 65 years of age. It has a considerable impact on the quality of life of patients, but it is not fatal. Symptoms can be treated and alleviated, although no medication has yet been found that provides an adequate response. Risk factors are age, being male, not smoking or drinking coffee, and having an affected family member. It is the second most widespread neurodegenerative disease, behind Alzheimer's, which affects 800,000 people in the country.
Beyond tremors, the lesser-known symptoms of Parkinson's manifest much earlier than mobility problems ---up to 20 years earlier---, which can be key to advancing research to find a cure. Precisely, the Parkinson's and movement disorders unit of Hospital Clínic is participating in a European study with which they want to better understand this disease in its preclinical phase. With the support of the American Michael J Fox foundation, 10,000 residents in Catalonia are being sought to participate by answering a simple online questionnaire, lasting about 40 minutes, without having to go to the hospital. It started in the middle of last year and it is proving difficult to find participants. So far, only 2,800 people have collaborated. The training sessions for the congress will be used to gather more responses.
The work being carried out by Clínic must serve to analyze how the body evolves before Parkinson's manifests irreversibly, with the aim of being able to diagnose it at the earliest possible stage, listing non-motor symptoms and risk factors linked to this disorder. Having an early diagnosis can help develop better treatments and cures, including preventive treatments, managing to slow down, stop, and even reverse its progress. This study comes after clinical trials with possible drugs have not obtained the expected results, considering that they have been tested on people in whom the disease had already advanced significantly.
To participate in the study, one must be between 50 and 80 years old, have Internet access, and reside in Catalonia. Participants must be neurologically healthy, excluding those diagnosed with a neurodegenerative disease, whether Parkinson's or Alzheimer's, or other neurological movement disorders, dementia, stroke, or amyotrophic lateral sclerosis (ALS). People taking medications that may increase or trigger symptoms associated with a neurodegenerative disease also cannot participate.
In the same vein as Clínic, the Sant Pau Hospital Research Institute (IIB Sant Pau) will begin a clinical trial at the end of this year focused on cognitive impairment in Parkinson's patients. It will do so with the Carlos III Institute of Madrid and will coordinate a total of 21 centers throughout Spain.