Following the success of the Dutch-language Parkinson’s lifestyle and recipe book ‘Lekker eten met Parkinson’, its producer Joan van Haaften – who lives with Parkinson’s – explains the importance of adapting recipes to make mealtimes more enjoyable for those with the condition
What inspired you to launch the project?
I can’t really cook, but I love to eat. When I realised that Parkinson’s was threatening my joy in eating, I also realised that I probably was not the only one experiencing this. I therefore launched the cookbook project, meant to bring the joy of eating back to the table.
Great-tasting meals, with carefully-dosed quantities of nutrients and seasonings, will make chewing and swallowing easier. That is what allows the fun in preparing and eating food to come back into your life. And that is how to make sure your friends still like sharing dinner with you, which will continue to make your social life interesting.
The idea to do something about cooking and eating came from the experience of many people with Parkinson’s – including myself – that they were actually loosing their appetite.
At certain times in the progression of the condition, we will sometimes have too little humidity in our mouths, and sometimes too much. With a dry mouth, swallowing your food is difficult. And with a more than necessarily wet mouth, it does not make you the most attractive guest at the table!
Many people with Parkinson’s have a tremor, which means that people often drop our food – which can be a factor that keeps you from going out to a restaurant, or eating at a friend’s house.
Eating slowly can be the result of other problems, but it also becomes a problem by itself, as you may never finish your meals, and may end up losing weight, which can become dangerous.
When I heard similar experiences from fellow people with Parkinson’s, I was convinced I had to do something about this problem – and I thought I knew the right people to help me with that.
How did you make sure that each recipe would still work well, once it had been translated into a number of different languages?
For each country where the book is to be published, we try to find local partners to select the recipes. That results in some recipes that are translated, some that are modified and some that are new.
Do any of the people involved in the project live with Parkinson’s?
I was diagnosed with Parkinson’s in 2002 and am the only person with the condition on the team. I know both the others personally and they both work within the field of Parkinson’s. Heleen Dicke is a dietician and was educated in ParkinsonNet structure of professional Parkinson’s health workers in the Netherlands. As such, she published the guidelines for Parkinson’s and dietetics, a few years ago. This guideline was also published in English last year.
Gerrit Jan Bos has worked as a chef in various restaurants both inside and outside our country and is now using his experience and creativity in consultancy for restaurants.
And, of course, a book usually needs a publisher. So the first one I talked to was my good friend Fritz Poiesz, who has been responsible for the publication of several books on Parkinson’s in the Netherlands.
How does poor nutrition affect people with Parkinson’s?
We did not create the recipes to provide a cure, nor did we figure out what food would tackle the effects of the medication. We want people to be challenged by the recipes in the book, and enjoy what they eat. So we have not focused on what poor nutrition might do wrong: we have looked for how nutrition can contribute to your overall health system.
What advice would you give to carers who need to prepare meals?
Prepare meals that the patient likes. It may be better to prepare smaller portions that are served in two or three parts, than to serve all at once. Avoid serving food that can easily fall off the plate or on to the ground.
What advice would you give to people with Parkinson’s cooking for themselves?
Many people with Parkinson’s do not only experience physical effects from their disease but also have mental issues to deal with. For instance they have difficulties in overseeing a complete process, when there are many details involved. This may happen more easily when they are tired or hungry, which are often the times that meals are prepared.
