Dystonia and Me
Dystonia – the first time I ever heard the word Dystonia was February 2020, when I was diagnosed with Meige Syndrome, which is a part of the Dystonia family. I was told I had a rare neurological condition. It is not life threatening, but life changing, and there was no cure. The only thing I could do was have botox injections into my face to stop the signals from my brain talking to the muscles in my face, every three to four months. I was given two leaflets and told not to look on the internet. That was it. At first, I was happy, I finally had a reason for the pain and having spasms in my face and neck, that I wasn’t able to speak properly, sing, control my tongue, smile, open my eyes, kept choking, felt like I was living with constant jet lag, I wasn’t sleeping etc. etc. etc., until I got home and looked on the internet. There isn’t much out on the world wide web about Meige Syndrome, so it didn’t take me long to research it. However, I found a video of a lady, and I was devastated. Her spasms were far worse than mine, and I thought is that how I am going to end up. I could not stop crying for me, or the lady. Next, covid lockdown happened. I couldn’t get to speak to doctor or anybody. I had nobody to talk to about my fears for my condition. And to top it off, my eldest daughter is a nurse, and volunteered to go back into ICU at the Hospital, where she worked. My stress levels were going through the roof.
With the stress of covid / my daughter, my diagnosis, daily news bulletins, I was beginning to spiral down a dark hole. I was having my injections regularly, about 14 each time, which never really worked. I learnt a few sensory tricks to help me speak, like touching my face as I spoke, chew chewing gum or spoke with food in my mouth, which, I know isn’t polite but it helped my speak. I loved wearing face masks when I was out because If people commented on my speech, I would touch my face, speak again and blame it on the mask.
As time went on, I found myself withdrawing more from society, until it got to a point Meige was not just ruining my life, it was ruining the life of the people around me. I had to do something. So, I decided to take back control of my life. I enrolled on a level 2 nutrition course, to enable me to change my diet to plant base, I started to do some exercise. And then in January 2022 I saw a video and story of Doug Patt on social media, who had Meige and getting better. Doug said he would never be cured but he could reduce the symptoms. And this changed my life. He was following a programme developed Dr Joaquin Farias. I researched Dr Farias, and signed up there and then for a zoom meeting with Dr Farias, then I saw he had made his programme on line, and joined that too. In January 2024 I will have been on the programme for nearly two years and have learnt the techniques I need to retrain my brain. I am now back out into the world. Yes, my speech is not perfect, my eyes are open, the spasm’s will never fully go. But I’m back to the old me… and I can smile and sing again. I am forever grateful for the Dystonia Recovery Programme and all the people involved.
On reflection, dystonia has had a massive positive impact on me, by making me reprioritise what’s important in my life.