WikiParky, remote assistance to Parkinson's patients in Covid-19 emergency
Coronavirus, sick people and people with disabilities. Disaster within disaster
April 18, 2020
1,5 billion students without schools
April 21, 2020
WikiParky is the free home teleassistance service for Parkinson's patients, activated by the Italian Parkinson Associations Committee with a large team of professionals and sector experts. Where public health does not reach, which in the Covid-19 era he left to itself the large community of disabled people and many sick people, the Third Sector intervenes with its volunteers.
Wikipedia, the mission
The illness unfortunately does not respond to the order of lockdown and the 'Parkies' need constant care. In such difficult moments, however, forms of 'technological assistance'like WikiParky.tv. A multidisciplinary variant of the telemedicine, online from 26.3.20, which every day offers various types of aid to those in need. All for one and the Italian Committee for Parkinson's Associations for all (!).
'The cure will come. Our job is to help families with Parkinson's reach this milestone in the best possible conditions.
Let's try to tackle the problems together caused by the epidemiological emergency from COVID-19.
Nobody will be left alone, also thanks to the possibility of interacting directly with the experts who make their skills available every day.
Rehabilitation in the clinic it is irreplaceable but we try, through our proposals, to keep patients active '. (Giulio Maldacea, Italian Committee of Parkinson Associations, president).
WikiParky, how does it work
The project it involves various parkinsonologists - neurologists, psychologists, physiotherapists, nutritionists, speech therapists, experts in complementary disciplines - who have volunteered for the platform. To offer help to people with Parkinson's, who cannot give up constant physical and rehabilitation activities.
▶ Access the platform is very simple, just connect to the website www.wikiparky.tv.
Participation the sessions are free and optional. Space website has a very broad weekly schedule that includes numerous activities, including motor rehabilitation, dance, speech therapy and neuroscience. There are also meeting times with neurologists, psychologists and other experts to get advice on how to cope with this emergency period.
The first findings
'We are very satisfied', explains Giulio Maldacea. 'The platform has more than 165 participants a day, 26 associations connected with a total of thirty thousand people including doctors and patients online. We often find it difficult to close the lessons, some have defined them as 'vital'.
It was necessary a process of digital inclusion of our grandparents. For them the virtual is a new world, the possibility of accessing it in a simple way is allowing and will allow them to rediscover interests, cultivate relationships, guarantee therapeutic continuity and find new stimuli. '
'Mister P' and 'Parky', these strangers
'Who I am? Who saw them? Why is it not talked about? '. Giulio Maldacea - creator and president of the Italian Parkinson Associations Committee, as well as a close friend of the writer and of Égalité - has been committed for years to help all those who have become part of the 'Parky' community. A world still unknown to most.
'Parkinson's it's a complex disease that doesn't just mean shaking, as many people think. Difficulty in evaluating spaces, speaking, swallowing, walking, reduced expressive capacity, altered physiological functions, continuous joint pain, depression.
These symptoms they can also appear to young people, in my case at 38 for example. And cause difficulties in the emotional, social and working fields. You have to rearrange everything and often change perspectives. And you have to be careful about the drugs that, in my personal case, have done more damage than the same 'Mister P' as Parkinson's.
'It's like finding yourself upon awakening from complete anesthesia. I tremble it is true, but he is the least of Mister P's jokes. At 38 I found myself at the helm of a boat that no longer responds to commands. You want to turn right and stay still, you want to enter the port, you are sure to pass it and instead you find yourself on the rocks'.
Parky, life and discrimination in Italy
Despite the difficulties - motor and other, that Parkinson's brings with it over time - you can learn to live with Mister P. 'There is no cure for Parkinson's, only the symptoms are treated. And above all, not only with medicines. I am referring to physiotherapy, diet, sport, affection, work, new stimuli, hope. You can live well, in a different, perhaps complex way, but it can be done '.
Discrimination in Italy they are the real problem, especially in the public sphere. Although the disease has been known for over 200 years and has a significant prevalence. At least 300 thousand people, equal to the number of inhabitants in Catania, slightly less than those of Bari. 'We are not talking about humiliations, abuses and difficulties caused in Italy by a crazy bureaucracy. The State, the Regions and the Municipalities, like other public and private bodies, persist in ignoring the needs of the carriers of this disease. It's a constant battle. '
We Are Parky
300 thousand Parkinsonians - of which a third are young, many under-50 - are estimated only in Italy. And also in this case - as in that of motor disabilities and disability in general - the public health service, fragmented between (in) state competences and (in) regional competences, is not even able to carry out active monitoring of the actual incidence of the disease and its trends. What constitutes the premise for a correct organization of indispensable services.
We Are Parky, is the first association created by Giulio Maldacea to help parkinsonians, where Parky is a term of endearment for Parkinson's. It is important to know the disease - thanks also to the gigantic network of scientists and researchers that Giulio has activated over the years - to help those who live it, to study the most effective non-pharmacological interventions, to overcome fear.
The association WeAreParky always works at the service of those who have encountered the disease. Through a portal online it is possible to monitor the situation and offer the Parky practical solutions - largely now discontinued, due lockdown of public health such as:
- healing resources neighboring areas, starting from the city and postcode of the person's residence. Hospitals with specialized centers, therapists, psychologists, gyms, dedicated ASL offices,
- the contacts with the various people who are part of the division and its great network.
Dario Dongo and Vanessa Ciccarelli
Dario Dongo, lawyer and journalist, PhD in international food law, founder of WIISE (FARE - GIFT - Food Times) and Égalité.
26 years old from Naples. She is a journalist by passion and profession, author of the blog www.blulife.it, she has been collaborating with various newspapers for ten years. She graduated from "La Sapienza" University in Media, Digital Communication and Journalism, she is now a specialist at the Lelio e Lisli Basso School of Journalism in Rome.
