Dystonia UK - Wing Walk - Raising Awareness

To mark my 20th year of having Dystonia, I’m taking to the sky!! We’ve booked for myself to do a Wing Walk on the 2nd November!! All funds raised will go to Dystonia UK to raise well needed awareness, hope and support for Dystonia sufferers. I was only 24 when I was first diagnosed. It’s been really hard, mentally & physically, and it’s been a painful, long journey. Unfortunately I’ve been diagnosed with other neurological conditions along the way.

Cervical dystonia is a neurological movement disorder that originates from the brain, characterised by continuous or intermittent muscle contractions which cause abnormal, painful, repetitive movements of the neck and head. The movements can lead to the head and neck twisting. It’s uncontrollable muscle contraction 24/7 and it’s unbearable. All cases of Dystonia are different and some cases are more visible than others.

Dystonia is the third most common movement disorder behind Essential Tremor and Parkinson's Disease and yet so many people haven’t heard of the condition. More awareness is needed!!

Dystonia can occur in different stages of Parkinson's disease. Secondary dystonias result from apparent outside factors and can be attributed to a specific cause such as exposure to certain medications, trauma, toxins, infections, or stroke. Which happened to my friend Donna who had a Dystonic episode.

Donna Hicks experience of Dystonia - Thankfully, I have only experience of 1 dystonic episode - this is not something I wish to ever go through again!

I have Multiple Myeloma (cancer of the plasma cells in the bone marrow) and in 2020 I was in hospital to undergo a bone marrow stem cell transplant. They explained to me that prior to the transplant I’d be given strong medication to prepare my body for the high dose of chemotherapy (melphalan) they were going to give me. I’m not sure what this medication was, but within minutes of it being administered I felt intense pressure in my head (as if my skull was in a vice) and distortion in my jaw and face. I felt out of control of what was happening to me, the pain was excruciating and it was extremely frightening. I couldn’t see my face, but it was obvious that the medical team could visibly see that something wasn’t right. There was panic in the room and after what felt like a lifetime (it was probably only a few minutes) I was given an injection to reverse the effects of the initial medication I’d been given.

Following this episode, I was exhausted and slept for some time. My body felt like it had gone through significant trauma and I never want to experience anything like that again. I can’t even begin to imagine what it is like for people living with Dystonia. To describe it as horrific doesn’t even come close.

I would be grateful for any donations and support. Dystonia desperately needs more awareness. Thank you and please wish me luck!