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German Parkinson’s association creates video to help children of young-onset people with Parkinson’s to understand the condition

Jutta Ahmerkamp-Böhme became chairperson of the board for Jung & Parkinson, an association for people with young-onset Parkinson’s in Germany, in January 2018. She was diagnosed with Parkinson's in May 2003, at the age of 35, when her sons were just 1 and 3 years old.

Here, Jutta tells the EPDA about a video the association has created to help explain Parkinson’s to young children.

Jung und Parkinson board members Jutta Ahmerkamp-Böhme and Melanie Spieker-Starck Jutta (left) with fellow board member Melanie Spieker-Starck

What is the video about?

"A young boy starts realising that his father is different from the fathers of his friends - he falls, he can't catch a ball properly, etc. The boy starts asking questions about what is happening, and the film tries to give answers."

 

 

Why did Jung & Parkinson create this film?

"A lot of our association members are diagnosed with Parkinson's quite early, and they start asking questions about the future. For example, regarding family, such as ‘will my partner be able to understand, will he/she support me?’, or regarding work – ‘for how long will I be able to work and to earn money?’. They also think about whether they should tell family, friends and colleagues about the disease, and, last but not least, when and how they should tell their children. The film was created before I joined the board in January, so the credit for this excellent job must go to them. Neurologists and psychologists were involved in the production to make sure that the information it features is correct."

Who could this video be most useful for?

"People with small children who also have, or know someone with, Parkinson’s. Of course, the video cannot replace the dialogue between parents and children, but it can help parents to explain what is going on with someone who has got Parkinson's, and it might help children to understand a few of the changes in their lives."

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The video cannot replace the dialogue between parents and children, but it can help parents to explain what is going on with someone who has got Parkinson's, and it might help children to understand a few of the changes in their lives.

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What are the main challenges of explaining Parkinson’s disease to children?

"It is important to find a simple, honest language and to use pictures and comparisons children are able to understand.

One of the main challenges is to find the right balance of information. On one hand, children need facts and explanations, and on the other hand it is important that they do not feel afraid or helpless."

How will the video be distributed?

"We have no special plans to promote it, but we believe the video should be shown as often as possible: it has been produced to help people and not to make money."

Please tell us more about Jung & Parkinson – what is it?

"The association was founded in 2014, and today it has around 200 members. Since our latest group started in Saarlouis, Western Germany, in September, we now have eight regional groups all over Germany. These groups work independently and meet on a regular basis, adapting the programme to their members' needs. Their activities include meetings, workshops, participation in fairs and events, discussions and so on."

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The situation of young people with Parkinson’s is completely different to the one of elderly people.

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How can Jung & Parkinson help people with early-onset Parkinson’s?

"The situation of young people with Parkinson’s (PwPs) is completely different to the one of elderly people. The latter have lived a longer life, they often have grown-up children and even grandchildren, and experience fewer financial restrictions. Whereas younger people often have small children, they might have financial obligations (such as rent or a mortgage on their home) and they worry much more about the future. We want to help these younger PwPs to find their own way in their new life with Parkinson's; we give practical advice and we tell them our own story. It’s important that they never feel alone."

Further reading:

Are you a person with Parkinson’s who has a young family? Have you found this video helpful in explaining the condition to your children? Email info@epda.eu.com and tell us your stories.

The EPDA is sharing this article for information purposes only; it does not represent the EPDA’s views and is not an endorsement by the EPDA of any particular treatments, therapies or products.

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