There will be some for whom their quality of life is so challenged by PD, that in spite of living as healthily as possible alongside more commonly available treatments, they are prepared to consider the risk of having surgery to help get their lives back on track. Liz McFadden is one such person with Parkinson’s and has written an account of her experiences before and after having Deep Brain Stimulation. Liz has tried to keep it as simple as possible so that anyone considering taking such a step has a clear picture of what is involved.
The voice on the other side of the phone said “Elizabeth there is only one way to go now” and I didn’t have to ask what he meant. Diagnosed since 2002, having tried just about everything with varying degrees of success, I was finding by 2011 that things were now starting to go downhill fast.
The dyskinesia was unbearable and I was down to under 7 stone in weight. There were days when I wouldn’t take any medication at all. This was just to give myself a break from the dyskinesia, which by this stage had almost confined me to a wheelchair. On these meds-free days the dyskinesia was gone completely but then I was left like a zombie. I was there…but in body only. I couldn’t walk, speak or do anything for myself. My quality of life was so poor and there was nothing in between, it was either the terrible dyskinesia or no movement at all.
It was June 2011 when my Parkinson’s nurse mentioned deep brain stimulation and by this stage I was more than ready for it. I told him to set the wheels in motion.
In October of that year I got a call to go to Frenchay hospital in Bristol for an assessment. The first part of the day was spent doing the usual paperwork and meeting the Parkinson’s nurse who was to do the assessment. At six o clock that evening, I was told to stop all meds as the assessment would be done the following morning. It was a series of simple tests like putting very small pegs into very small holes, writing my name a few times…all very simple but without medication, very difficult. While they had me doing this they were also scoring me on my performance. My score at this point was in the teens. During all of this, I was also being videoed. They then gave me medication and waited for it to start working before doing the same tests all over again. This time my score was in the eighties but the dyskinesia was through the roof…so bad that my husband refused to leave my ward that night. Also, later on that day they made me do a memory test. After the test, the nurse explained what the surgery involved, showing me samples of the leads that would be connected to my brain and the stimulator that would be implanted in my chest. She also explained the risks which included stroke and meningitis. This was a bit scary. I didn’t dwell on it but it was clear in my mind that it could happen to me.
The next day, the Parkinson’s nurse and the neurologist came to see me and told me I would be a suitable candidate for DBS. I’m not sure what I felt but I know I would have been very disappointed if I had not been suitable. After being told, we were free to go and we flew back home to Ireland. This was to be the first journey of many.
In February 2012, the letter arrived telling me I was to be admitted to Frenchay hospital in Bristol for Deep Brain Stimulation on the 15th March and I would have the surgery the next day
The morning of the surgery came and believe it or not, I was not in the least bit nervous which was very unusual for me. I left strict instructions with my husband to tell no one until it was all over because I knew my family would be worrying. The porters came to take me to the theatre. I remember passing a clock and the time was 8.10; I remember chatting to the nurses and doctors who were to assist with the surgery; I remember having the anaesthetic and that was it until I came around again sometime after half six in the evening.
I felt a tightness in my head which was worse when I laughed or coughed, but there was no real pain. My head was numb for a good six to eight months after surgery. Some people complain of headaches after DBS but I was fine. I had spoken to other people who had this same operation who told me that even before the stimulator was turned on that it felt as if they had got a new life. For me, I can only say there was absolutely no change in my symptoms. I mentioned this to the PD nurse and she said it can happen for a small number of people but only lasts a few days. She said it is what’s known as the ‘honeymoon period’. In Bristol, the stimulator is not turned on until six weeks after surgery. This is to make sure that the swelling in the brain has gone down.
After six weeks I returned to Frenchay to have the stimulator turned on and I must admit I was more nervous about this procedure than I had been about the surgery. This was crunch time. Had the surgery worked or hadn’t it? The PD nurse wheeled me to a port-a-cabin a fair bit away from my ward. She turned on the stimulator and worked with the settings as well as checking my mobility while doing so. When she got the settings right, I was able to walk back into the ward and at this stage I did cry my eyes out because it had been almost a year and a half since I had walked so well.I went home the next day and the children were delighted. My 11 year old daughter said “Mammy you’re as good as new”.
It’s been a year and 4 months since I had the surgery and although my walking is still not great, I am 99% better overall. I know I will never ‘run’ any marathons but I might try to ‘walk’ the odd mile. Just to be able to do normal everyday things is good enough for me.
As far as Frenchay Hospital is concerned, I cannot speak highly enough of them. The doctors and nurses were just great and nothing was too much trouble. For anyone thinking about having the surgery, I would say…make up your own mind and don’t let anyone rush you into it. Believe me, you will know yourself when you are ready.
About the Author:
Elizabeth McFadden Elizabeth was diagnosed with Parkinson’s in 2002 at the age of 41, having experienced symptoms since 2000. She lives in Buncrana with her husband Gerry and her two children aged 12 and 16.