Parkinson's in Italy

Don't think - Dance!

Massi on Parkinson's in Italy

I always find it exciting to learn what the situation is like in other countries, not only in terms of care for people with Parkinson's, but also how Parkinson's is dealt with in public.

Recently, while talking to Massimiliano Iachini from Italy, I asked him if he would be willing to give me an insight into the Italian Parkinson's scene in Italy.

I know Massi, as he is called by many, mainly in his role as a DJ at Radio Parkies and from international Zoom conferences, where he mostly sits in front of a beautiful royal blue painted wall. And I know that we both share a passion for dancing. But that's where my knowledge of Parkinson's and Italy ends. And I assume that many of you feel the same way.

As in Germany, there are also various self-help associations and contact points for people with Parkinson's in Italy. Massi is involved in two national associations, Parkinson Italia, an umbrella organization, and AIGP, an association for young patients, which Massi chairs. The organizations are currently working together to set up a national network in order to be able to bring certain topics to the public, but above all to politics, with more emphasis.

No knowledge of the number of young people with the disease in Italy

Taking care of young people is new in Italy. Nobody knows exactly how many young people with Parkinson's disease there are in Italy. Officially, no distinction is made according to age at diagnosis. The symptoms and course of the disease look very different in young people. Massi even goes so far as to say that young people with the disease are a completely different disease. The Association for Young Patients, which has offices in all parts of Italy, is working to collect this information and data in order to promote more differentiated care for patients.

Similar to Germany, Parkinson's is little known to the Italian public. Even the disease's old name - shaking palsy - sometimes appears in descriptions of Parkinson's. And the designation Disease Parkinson's is very much associated with prejudices and fears. In Italy, the term Morbus is closely associated with contagious diseases. In order to clear up this misconception, a campaign was launched that has grown in size and scope over time.

It started with a photo exhibition about four young people with Parkinson's disease. Press releases followed, and a play was made of it. A dialogue between two personified, a male and a female, Parkinson. The exhibition became a traveling exhibition, where recordings of the play can be accessed via a QR code. There is a book and an audio book about the activity.

Strong connection between Parkinson's and art

The link between art and Parkinson's is very strong in Italy. So my conversation with Massi inevitably leads to the area of ​​dance. The training for dance teachers "Dance Well", for example, has its origins in Italy. This is where the idea came up to develop a method together with those affected themselves to bring people with restricted mobility closer to dancing. This has resulted in a training program for dance teachers, which is now offered in five cities across Europe, including Kampnagel in Hamburg. Based on modern dance, Dance Well assumes that there is no right or wrong when it comes to dancing. Every movement is dance. Dance Well is open to all people with mobility impairments, regardless of age or gender, with a focus on people with Parkinson's disease. People often dance in public spaces, in parks, in museums, in theaters, in exhibitions.

“The brain needs to be stimulated, it needs constant challenges. Therefore we have to stay curious, move and breathe. We need to massage our brains with new ideas.”

Massi is living proof of that. The latest project he is working on is a book. It is a community project of eight people with Parkinson's. The starting point is a boat trip. More will not be revealed here.

"non chiamatemi morbo - don't call me (contagious) disease", is the title of the video. that made the campaign famous throughout Italy.

interesting links on the subject

Hamburg, December 29.12.2022rd, XNUMX, May Evers,