A blog post by Malky Padwa
September is Dystonia awareness month.
Those who know me well will know more about my life story. It’s not something I share much here, not for wanting to hide anything or for being embarrassed of it.
Living and flying here in the UK, I choose to focus on what I achieve and not where my Dystonia holds me back.
For those who don’t know, Dystonia is a neurological movement disorder that causes uncontrolled spasms and muscle contractions. It’s a constant physical battle, which is why I underwent Deep Brain Stimulation (DBS) surgery – where electrodes are implanted in the brain connected to a pacemaker like battery in the chest that sends constant stimulation to help control the tremors and spasms.
Living with early onset generalised torsion Dystonia means having to live with the harshest version of my monster (I found it’s helpful to name my Dystonia for its behaviour!). My symptoms started at the young age of six and a half with a very fast deterioration. In a short six months, I went from being a regular kid running around and doing anything a six-year-old would do, to completely losing full control over my body and wheelchair bound.
In trying to beat it, I’ve been through DBS surgery 4 times over the last 20 years. When I had my first DBS surgery 20 years ago, I was just 17 years old and had already been living with Dystonia for over a decade, making me one of the youngest patients at the time to undergo the procedure. In line of doing things in my own unique way, I was also one of the first patients to get 2 sets of DBS: traditional bilateral GPi and the latest edition of another set of bilateral in the STN.
Managing the constant ups and downs has taught me exactly what resilience looks like.
This September, I want to celebrate those who have made a difference in my life—those who see me beyond my Dystonia and have helped me see what I’m capable of.
Aerobility tops the list. They are a charity with one goal: helping people with disabilities experience the magic and wonder of flight.
Since my first flight in 2022, through my many ups and downs—be it pre- or post-surgery, before or after a DBS adjustment, or simply when my monster wants to remind me he’s still there—my instructors have ALWAYS found a way around it to get me flying safely.
You have been the ones who believed in me and my abilities, and shown me I can accomplish far more than I ever dreamt. That is something I will forever be grateful for.
My wingwalking has become the highlight of my summer. I’m not a professional wingwalker, but I’ve now completed two wingwalks—my first regular one last summer, and an extreme aerobatic wingwalk this year.
This was my personal way of giving back to the charity that has given me so much by taking on the challenge to raise funds for Aerobility. It takes a certain level of ‘craziness’ to take it to that extreme level.
I owe a huge shout-out to the AeroSuperBatics team for supporting me on the day in such a respectful and dignified way, allowing me to show the world that people with disabilities CAN get up on the wing and get the same experience as any able-bodied person.
The Pooleys team, both Pooleys Flight Equipment and Pooleys Aviation Academy thank you for all your support throughout my journey. It’s an honour to be a part of the Pooleys Ambassador Programme, and thank you to all my fellow ambassadors for your support.
A huge thank you must also go out for their incredible, ongoing support of Aerobility as a whole—it means the world to our community.
Dystonia is only one part of who I am. This #DystoniaAwarenessMonth, I’m proud to support the #MoreThanDystonia campaign and help raise awareness of the people behind the diagnosis.
