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Tuesday, September 20, 2011

6 Weeks on...Fine Tuning.

This entry will only be up for a few days. I suspect that few are checking the blog now; I asked for feedback, and received it only from friends.
But in case there's any one curious as to how I am at 6 weeks... here goes.
A/Prof Williams and I are still fine tuning.
I have control of the stimulator to a point; parameters are set.
Just to confuse me, there are two modes; A and B. I am up to 1.0 on B (original mode), and 1.6 on A (new mode). Last week, when I hit 1.5, my left foot turned in, making walking uncomfortable; but NOT painful, so I stopped.
I am now taking MUCH less medication. Besides stopping Sifrol (Mirapex), I no longer take any Madopar.
I just take Stalevo 4 times a day, and one Symmetrel.
Also, I have stopped the Serrequel completely, because I did not like the vivd dreams I was experiencing.
Unfortunately, I am not sleeping as well as I was.
Other than that, my movement continues to be still, and my friends notice a great improvement.
I can finally  drive (hooray!), and hope to mount my bike next week as Spring weather hits beautiful Melbourne.
I'm off to A/Prof Williams today, where I hope that my foot issue will be resolved, and Molly and I can enjoy some walks together.
I still wear my wig when out, as my hair has not covered the scar yet.
If you want me to continue with sporadic updates, please email me and let me know, or else I will assume that I am talking to myself, and no one is reading this any more.


  1. Hi Karyn,

    Your blog has been a wondeful insight for many - people are often too shy to comment!, but I do notice that you have had a lot of "looks" at your page.

    Paul is more than 12 months down the track, and he fine tunes himself twice a day, depending on how he feels, and his neurologist changes the parameters a couple of times a year as well - it is an ongoing process!

    But my main point is, that this blog has been invaluable for Paul's daughters who have had a very hard time coming to terms with their Dad's problems. They have been reading your blog - I directed them to it, and now they have a better understanding of the whole process - it has been wonderful!

    It's great that you can drive - a major bonus!

    Take care, and enjoy the journey, and please don't close the blog down - it is a great journey, and one to be read, and re-read for those who are on the same journey.

    Love from Linda & Paul

  2. I'm with Linda on this... it's a help to explain to friends about PD and DBS - your blog reads well, and is very straight forward.
    Don't close the blog.... it's a great benefit (o:


  3. i'm with both of them on this....keep your blog...we all need it

  4. Dear Karyn,
    I am still looking at your blog regularly just in case. I enjoy reading what's happening.

    Love friederike