2016-10-12 – Collecting data.

I slept much better last night – self-medicating with cannabis yesterday evening made sure that I dropped off to sleep quickly when I went to bed.  I woke a couple of times, but went straight back to sleep.  When I woke around 8am, I had quite bad lower back pain, but at least I didn’t have the violent dyskinesia that has accompanied it in the past.  I had no tremor, and my dystonia was virtually unnoticeable.  I got up, got dressed, got myself moving and the back pain was soon a distant memory.

I posted a question to various Parkinson’s Disease and DBS pages on Facebook a few days ago, asking people who had undergone Deep Brain Stimulation surgery to document any unexpected side effects from having the procedure.  The idea is to gather all of this data, and make a video cataloguing  the various effects and side-effects as a resource for people who may be considering having DBS – I was unable to readily find this information before I had my operation and, although there is nothing that could have stopped me from having the surgery, it would have been nice to have been a little better informed.  Luckily, I haven’t had any really bad side effects, but if I had, then I think it would have been nice if I had been warned about them beforehand.  I find it amazing that people have had such appalling side-effects (even ones which they haven’t been warned about) and yet when I ask the question “If you had to make the decision again, would you still have DBS?” the response (generally) is a resounding “Yes!! It’s changed my life!”.  It just shows how poor their quality of life must have been prior to surgery.

I feel incredibly fortunate to have had this surgery, and to have greatly improved my tremor without sacrificing my vision, or my voice (too much), or my balance (too much), and to have also improved my bradykinesia, my mood and my motivation.

One thought on “2016-10-12 – Collecting data.”

  1. Good for you Ian it just goes to show there is always light at the end of a tunnel and better days ahead, keep up the great blogs.

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