Deep Brain Stimulation 2008-2014
In the July of 2008 I had my DBS operation and in 2013 I had the battery replaced and I am going to write about , what it is like living with DBS.
The moment after the operation when I woke up, when I think back on the six years, that was the very best moment. I was not stiff, I had no over movement, my hands did not tremor and I felt good, I went for six months without medication only relying on the stimulator. The Dr’s said six months to recover but it was more like two years, not that the first two years were bad but it took me two years to go back to work full time, the biggest problem I have is reading and concentration and over the six years that progressively worsened.
But it all changed in 2013, the battery was running low and I guess Parkinson’s was declining and I found slowly but surely I was not able todo things anymore, like walking, I seemed to be off more than on.
Time for a battery change, I had high hopes for this, I really thought it would make a huge difference and I would be like I was in 2011. After the operation I felt the same and that was a big let down, I think my family were disappointed too, DBS had been so amazing, besides the side effects but you can’t have it all.
For four months afterwards I would be experiencing such drastic changes, one moment I was doing fine and the next I would be completely off and if I jiggled the battery then things would improve and I could feel an electric current going through my body. The Dr’s then discover that the cable that runs from the battery to the top of my head had broken and sometime it was making contact and other times not.
Another operation and the cable was replaced – now at least I was on but still not the same as before.
In 2014 I had to stop working as things were not going well, my body was not reacting well to medication and the DBS had to be set to low voltage as the legs were not responding well to high voltage.
The problem I am experiencing with my parkinson’s is I find todo anything requires so much energy that I am continuously exhausted, my legs feel like they have 50kg weights attached to them, then reading and concentration are right down at the bottom.
It now means adjusting life to suit me better, one reminder I have is when they switch DBS off, then I see how bad it actually is without it.