“There is nothing wrong with my head and I will not be judged by my condition”


Author: Joe McAweaneyPublished: 2 August 2018

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In the eighth in our series profiling the bloggers supporting the World Parkinson Congress 2019, we talk to Elisabeth Ildal. The Danish blogger discusses the power of writing, cycling in San Francisco, US – and why she’ll never be judged by her condition

Tell us a little bit about yourself.

I’m an indomitable, stubborn fighter and full of energy. I hold on to the positives in life – there is nothing wrong with my head and I will not be judged by my condition. I am not an appendix to Parkinson’s, it’s an appendix to me.

Do you have a message you like to promote in your writing?

I always think that even if someone has Parkinson’s, they can live well with it. Sometimes it is bullshit, but you can do a lot for yourself – such as finding the right care persons, therapists and exercises.

It’s also important to socialise, try to do the things you have always done and live well with it!

Is there an aspect of Parkinson’s that you’re most passionate about? 

I am most passionate about sport and exercise. After the World Parkinson Congress 2016 I spent three weeks at a rehab in Montebello, Spain. That was great for me and when I got home I decided to start my own training centre.

How widely read is your blog and in which countries? 

I’d estimate I have somewhere between 500 and 1,000 readers from Denmark, Iceland, UK, Australia, Nepal, US, Belgium and Poland.

Have you been surprised by the global audience and level of interest you’ve attracted? 

Absolutely, and it has allowed me to meet so many great people.

After spending three years in a dark place, where I didn’t discuss my condition with anyone, I decided to share my news with a Facebook post. Writing about my condition was a relief for me.

Which of your blog posts has been the most controversial?

I think probably ‘Dry fog for chronic disease’.

Talk us through your routine: when do you find time to blog?

Well I’m pretty busy at the moment. I’m a politician here in Denmark and am up at 6.30am every morning for work. I also have my own small business, so I write when I can find a spare five minutes here and there.

180802 Elisabeth Ildal body

What physical challenges do you face in writing and do you use any technology to support you? 

I always write my posts on the computer. Until last month, I hadn’t been able to write by hand for a long time. However, two weeks on Levodopa Madopar and my handwriting is back.

What do you hope people will take away from reading your blog?

That you can live well with Parkinson’s for many, many years.

Can you share any memorable moments from the last World Parkinson Congress you attended? 

I remember at the last congress I actually missed my flight from San Francisco so found myself with a bit of time to kill. The next day I rented a bike and cycled back to the conference centre but nobody was around so I settled for dinner alone in a small restaurant.

As I was eating, three guys came into the restaurant, one of whom started to wave at me – although I didn’t have any idea who he was. It turned out it was Andy Butler from Parkinson’s People Facebook group – he said he’d recognised me from chatting on the page. His other two friends were DJ Chrissy and DJ André from Radio Parkies and they invited me to DJ on the show. We’ve all remained close friends ever since, and visit each other all over Europe.

What are you most looking forward to at WPC 2019?

I’m looking forward to trying to make this congress the best one yet. I can’t wait to meet all the amazing people I know, have some fun and of course hear all the experts speak.

Read more:

World Parkinson Congress 2019 Bloggers: Allison Smith

World Parkinson Congress 2019 Bloggers: Kirk Hall

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