Hello September and Dystonia Awareness month. Dystonia is a neurological condition affecting the muscles causing them to spasm and twist, sometimes into impossible positions – the girl in The Exorcist is nothing compared to what dystonia can force the body to do. It has been in my life much longer than 2013 when I was finally diagnosed and affects much of my body at various times. The long wait in diagnosis for people with the condition is why September and the awareness it can bring is so important to me and why I want to take part in Dystonia UK’s Dystonia Around the World challenge.
What is Dystonia?
- It is the 3rd most common movement disorder behind Parkinson’s and essential tremor.
- It can affect any region of the body including the eyelids, face, torso and limbs. Some people have their voice affected.
- It can affect one part of the body or many making it more generalised.
- Some have dystonia from childhood but it can develop as an adult.
- It is usually a lifelong condition with no current cure.
- Treatment includes botox injections, medication or deep brain stimulation (DBS).
What is the Dystonia Around the World Challenge?
The aim is to join forces to collectively and virtually travel 25,000 miles from Dystonia UK’s London office around the world and back, and raising £25,000 to help raise global awareness of the condition affecting 100,000 people in the UK alone each year.
Miles can include those done physically by walking, jogging or cycling or by choosing another activity such as drawing and craft. Every 10 minutes of activity = 1 mile travelled!
Last year, I took part in the Dystonia Around the World challenge by writing short stories for my sister blog, Kate Kenzie Writes and this year I have scratched my head trying to decide what to do until I tripped over my overwhelming TBR pile that has extended to the floor despite already filling two book trolleys – I’m going to finally read the books that have sat patiently waiting for my attention including the rereads who are calling me. With only have a handful of blog tour books to read, now is the ideal time to start. I may even be able to reduce my Netgalley online shelf that is fast becoming an encyclopaedic length. I’ll aim to post updates on my Instagram page. How many do you think I can read?
Lockdown and shielding has also meant the pounds have piled on and my mobility has suffered. With this in mind, I’m also aiming emerge from my duvet more and face the world with my walker more (despite my love-hate relationship with it) and see where that leads.
If you’d like to support my epic readathon and help fundraise for Dystonia UK, click here.
Let the readathon challenge begin!
Happy reading and stay safe