Milk and Electricity don't Mix: The Oxford Experience
A beautifully written and moving account of one young woman's experience of surgery for Parkinson's.
As I lay there on the operating table, I thought of how life’s twists and turns had ended at this time and place. Where’s was this anyway? Well it was the Radcliffe Infirmary in Oxford, and the reason I was there was to undergo the medical procedure call Deep Brain Stimulation in October 2004. My mind was clear and I felt calm. I thought of my family, my two children, and my husband; and my friends who stood by me as I had tried to cope with a diagnosis of Parkinson’s disease at the age of 38.
The road to Oxford was a rocky one. My neurologist Dr. Janice Redmond, whom I first met while pregnant on my second child, had tried everything. However I swung from being ON and very dyskinesic, to being OFF ie fluctuating Parkinson's no matter what was tried. It was Dr. Redmond who first mentioned this procedure, the neurosurgeon Mr. Tipu Aziz and the Oxford Movement Disorder Group.
It took a year for us to fight through the bureaucratic nightmare to get an E112 and I was called to Oxford for assessment. To say it was entering another world is an understatement. I met Carole and Clare, who were called Movement Disorder Nurses. They genuinely understood everything I said about the difficulties I had trying to live a normal life with Parkinson’s.
I underwent a battery of tests on the Sinemet and off. I react very quickly to the drug.
There was a day of neuropsychological testing in order to be certain that I had all my cognitive faculties (I think). Mr. Aziz agreed to do the procedure, while making sure I understood the risks and the fact it would mask the symptoms of the disease not cure it. We went home to plan.
So here I was all tested and ready to go. There was one thing about Mr. Aziz that I disagreed about that was his choice of music. Rumour had it that he listened to the Chemical Brothers in the theatre. I bought Burt Bacharach sung by Dionne Warwick for some light relief!
Everyone was so supportive. Carole held my hand through it all. My head was in a frame to that was bolted to the table to stop it from moving. Yes, I know you are awake but you are not alone. There seemed to be a mass of people to the left. I did feel it when they come to insert the leads. I do not know all the technical details, and frankly I put my trust in the team. I just concentrated on remaining calm and thinking of all the positive things in my life.
I do remember this vividly – I remember the way I could feel my hands and my feet unfurl and make graceful movements in the air just moments after Mr. Aziz attached me to an external stimulator and turned on the current. It was amazing. It felt like my body was waking up from a long sleep.
The stimulator was inserted a week later into the wall of my stomach under full anaesthetic.
The week between the two operations was strange.
1. First of all, my body was still and I slipped free of the disease (and of the dyskinesia that had plagued me) for a short while. This was because the area of the brain that was stimulated, the subthalamic nucleus (STN), was swollen for a while. I must stress that I was never in pain.They told me that the symptoms would return and they did, like an old friend you know very well but you don’t like a lot.
2. Secondly, do not spill milk on your stimulator while eating cornflakes as milk and electricity do not mix.
3. Thirdly, do not look in the mirror. Between the unwashed hair for three weeks and the wires from the stimulator hanging there it is not a pretty sight.
4. Lastly, I could say to avoid medical students who ask you politely if they can ask some questions for the forty-millionth time. But of course you will always say yes, because these people are kind, supportive and have given you a new lease of life.
Time crawls by and if you promise to be good, and not wash your hair, and keep your stitches dry you may get home after 12 days……….. But do not forget your hat. S. O'R.