March 15, 2019

Around Europe and Beyond – DRIVE for Dystonia

My story with Dystonia started in February last year.

It came suddenly, without any signs of warning. My neck became stiff and my head started to turn to the side. 

First was there was disorientation – what’s happening to me? Why can’t I control myself? Why is my body not listening to me?

Work and everyday life became difficult. The worst part though was not knowing. What is it? What caused it? And what solution do I have?

Each day my condition was getting worse and I had no idea where to look for help. Not knowing what was exactly wrong and I couldn’t even explain it to anyone else.

Of course I tried visiting my family doctor. I tried three times. Each time being sent away with a list of excersises for stiff neck. So I tried less conventional treatments too – chiropractic, acupuncture, all kinds of magic. None of them worked as I wished they would. 

Eventually I’ve found a clue on the internet.

I went back to my family doctor and asked for a referal to a neurologist. It was not that easy though.
I saw many specialists who had never heard of cervical dystonia. Finally, after trying various treatments I did try one which gave me some hope. Craniosacral therapy eased my stiff muscles and helped me relax.

I’ve found out about it, amongst many other things, thanks to Adam Kalinowski – founder of facebook Dystonia support group. I’m really thankful for all the help I received from him during those moments of crisis and hopelessness.

Then, after a couple of months of searching I finally met a neurologist who oficially diagnosed me with Dystonia. What a relief, I said to myself. At last I’ve found the true name for it. And then a disappointment hit me – there is no cure for that.

I’ve been sent to a series of check-ups and treatment with botulinum toxin injections. Meanwhile I’ve also found out I’m pregnant. Those wonderful news brought also fear to me – how will this affect my illness and how will I manage to take care of a baby?

Luckily after a couple of weeks my symptoms got weaker and sometimes were even almost gone. All that withouth injections or any other medication. Just vitamins, sun and a bit of positive thinking.

Right now I’m a mum of a 3-month old baby boy and my Dystonia is weak enough to let me manage my everyday tasks and enjoy the time I spend with my family.

I think what also helps me fight the illness is my stubborness. I can’t imagine leaving all my dreams, plans or social life behind. For many years travelling the world has been one of the biggest goals in the life of me and my husband. Planning next trips, reading guidebooks – all of that now helped to keep my thoughts away from Dystonia.

This year for a change, my husband Kordian went on a solo motorcycle trip from UK to the most remote regions of Morocco. Together we packed all his gear and, again, with help from Adam Kalinowski who supplied the stickers and various merchandise, Kordian rode under the banner of Dystonia Europe to share awareness during the Brain Awareness Week.

He first rode from Manchester to Portsmouth where he jumped on a ferry headed for the Spanish port of Santander. He travelled through Spain and after crossing the Strait of Gibraltar got to North Africa. He rode through mountains and deserts meeting people of different cultures, other bikers and lonely travelers who had one thing in common – none of them have ever heard of dystonia before. 

Spending each night in a different place Dystonia Europe and dystonia awareness in the shape of stickers and leaflets reached out and found their new home in some of the least visited parts of Morocco.

After making a huge loop through the country he crossed the sea again and went back home safely through Spain and France.

Altogether – he travelled for 23 days, through 4 countries all together 6500 kilometers on just a small, British Herald 125cc. 

I believe that deep inside every one of us there is enough strenght to fight dystonia. It’s not an easy fight and we may never win it, but we simply can’t give up. It’s worth to slow down and take proper care of your body, clear your mind and focus more on things that make us happy rather than ones that scare us. With the right mindset I believe this fight can eventually be won.

Paulina Handzlik

Dystonia Europe: On behalf of the dystonia patient community in Europe and elsewhere we would like to thank Kordian and his bike for this fantastic initiative. We are extremely grateful for your efforts to raise awareness of dystonia to the public in several countries <3