My DBS Journey
Parry, aged 80.
Had DBS surgery in July 2014.
I was diagnosed with Parkinson’s in 2009.
My Parkinson’s was becoming a social embarrassment. I had a fairly mild tremor, but people would want to know what was wrong. Some people would look at me as though I was crazy.
My specialist told me about DBS surgery as a possibility and suggested I consider having it done.
Although it was a long operation, I decided to go ahead to hopefully get rid of the tremor which was causing me embarrassment.
It took four months from the discussion in March 2014 through assessment to being in the operating theatre with a huge team of specialists.
Just 24 hours after surgery my specialist came in and said that the DBS was working. He had set it for 1.5 volts and there has been no trace of a tremor ever since.
My specialist told me he would teach me how to adjust the stimulator, but I said ‘what’s the point of adjusting it? I know nothing about the parameters’.
He gave me night-time and daytime settings and showed me how to turn it on and off. I just need to switch between the settings.
I chose to have a battery implanted rather than spend hours at a time recharging regularly. The first battery lasted three years before it needed to be replaced, but the second one only lasted two years. The third battery now has a greater capacity, so it shouldn’t need replacing for a while.
I’m very happy with the surgery – people are stunned by how well it’s worked. It was as though someone had waved a magic wand over me. I’m thrilled with the outcome.
If anyone is considering DBS they should definitely have it done if they qualify, and can afford it.
It’s a very expensive surgery, even with top-tier health cover. But apparently some operations are done for free for some patients. I’ve met one of these lucky ones and his surgery was very successful.
It’s all upside; there’s no downside.