Untold Story

Here is the untold story of Deep Brain Stimulation (DBS) - the “side effects”. As with “side effects” of medications, these are essentially the “effects” of the treatment that we do not want. In this case, it is the effects common when they stick wires in your brain. These can interfere with daily functioning, and in the DBS literature they call these “adverse effects”.

I feel like I need to start by saying the desired effects of DBS have been wonderful for me. In a minute I will whine about the one adverse effect I do have. The possible effects range from balance issues, which I have, to death, which I do not have. I am very lucky. Other common adverse effects include speech problems, gait problems, depression, and confusion. None of which I have so far.

As I mentioned, I do have issues with my balance. After my second programming appointment, I noticed I would go to stand up and would fall back into my seat. No dizziness and no pain. Nothing. I just fall back. In subsequent programming sessions we tried to reduce this problem with mixed results. The best we have come up with is a setting for when I am writing or sitting for long periods of time (Setting 1), and another setting for when I am up and about (Program 2). Most importantly for me, I can read my handwriting on Program 1.

The process of changing from one setting to another with my remote is simple and fast. There is a potential for three programs, though right now we are using the two described above. When I switch programs the effect is within five seconds, and all I feel is a slight tingling in my arm and hand which disappears quickly. It is all pretty amazing.

There are downsides to both settings. In Program 2 my left arm tremors a bit, my writing looks like a series of random lines and, weirdly, my scalp tingles sporadically. I do not have severe balance issues as I do in Program 1. Besides balance issues with Program 1, I also tend to move around while standing. This can happen without my knowledge. For example, I was standing in talking with a friend at a bar. Next thing I know I was standing 3 feet away from where I had started, and I had to apologize to a person sitting at the bar because my rear end was now in her face. No I had not been drinking, though that may better explain my butting in.

Balance issues can be common with Parkinson’s, though I never had it before DBS. It is a common effect of DBS. It can cause falls, though I have not fallen. I carry my remote with me all the time. This is no easy task as it is the size of a small toaster. Still, sometimes I forget to change settings. So if I butt up against you sometime, you will know I can sit and write about it immediately.