What is your name?
My name is Bengt-Erik Calles and I live in Sweden. I am President of Dystonia Sweden. I live 5 months of each year at my summerhouse in Hjortnäs, Leksand and the rest of the year in Falun. Both places are situated in Dalarna.
What are the benefits of working within a patient organisation?
I have always worked in different organisations. Politics, sports, Rotary and so on. Dystonia Sweden is my first patient organisation. I have been on the board since I retired from my work in 2011. I started in 2003 in our regional network, Dystonia Dalarna. I like to meet people and try to help them in different ways.
I myself have had Cervical Dystonia since 1980 and got my diagnosis in 1989 along with the correct treatment for people with Dystonia.
How do you like spending your free time?
I have a wife, who has had Alzheimer since 2010 and has lived in a specialist home since 2017. We have five children and thirteen grandchildren. I see my wife twice a week and visit and help my children with different things. I have four houses in Hjortnäs and a boathouse. And one in Falun, so there is always something to do on the buildings. I also like gardening and have a lot of flowers and berries in Hjortnäs and a lot of lawns to cut, 4000 m2. We play boules once a week and swim in the lake Siljan. We could also take a trip with my boat.
What keeps you motivated on the tough days?
On tough days I work a lot in the garden and walk in the forest. My brother and his dog are my neighbours in Hjortnäs. My children and grandchildren come to visit me and help me if I want something done.
So I never complain.
What makes you angry or frustrated?
I am seldom angry, but if someone is mean to someone, I will defend them like an animal!