My Trip to the the Neurology Hospital London

I’ve had a lot of family and friends asking how I got on at the Neurology hospital in London so i thought I would write a bit about it here. For those of you that don’t know I suffer from a condition called tardive dystonia – It is a movement disorder characterised by involuntary muscle contractions caused primarily by reactions to particular prescription drugs. It started in 2011 and has gradually been getting worse and worse. Imagine someone pulling your head back and hips forward and trying to walk!

Despite having no reaction to medication to counteract this and even trying botox it was decided that neurology could be the way forward. The neurologist was really nice and said what we thought he would suggest – a treatment called Deep Brain Stimulation, Mainly used for Parkinson’s Disease it can also be used to treat OCD, depression, tourettes as well as dystonia. The operation (lasting 4-5 hours) involves inserting two fine electrodes into the brain. They are connected to a subcutaneous power source which delivers a constant, painless, signal which blocks the signals that cause the disabling symptoms. Although it sounds scary, the doctor was very positive that I would have good results and has treated 6 patients with this rare condition before. I will have to stay about 10 days altogether and thankfully won’t have to shave all my hair off!

Unfortunately they is a bit of a wait until spring but at least hope is in sight. I will have to go across for 3 days before that to get a brain scan, speak to the physiologist, do a memory test and meet the surgeon but that probably won’t be until after Christmas.

I try not to let it hold me back but activities like dancing and gigging are off the cards as i can’t stand up for very long…. sitting in a pub though is doable and there shall be plenty of that over Christmas. Thanks to everyone for their support.