Monday, February 10, 2014

DBS: An Update One Year Later

It is now July of 2014 and it's been a little over one year since Dr. Ley removed the stitches from my scalp problem. My hair is growing back and I have my normal bangs and overall length as well as two sections of somewhere-in-between.

Hair growing out & my DBS unit
My speech doesn't seem to have gotten any worse, or else my Wonderful Husband and close friends have just learned to decipher what I am saying. 

A "lap" around my neighborhood is half a mile and I have been walking it every morning without fail. About a month ago, I started making two laps. In the last week or so, if I get up early enough (it's been hitting 90+ degrees by 6 am), I try to do three laps. 

I haven't seen a sunrise since Winter, which means I am sleeping later. I guess I am finally catching up on all the sleep I lost between 2007 and 2013! For most of those years, I did not dream. At least I never remembered dreaming. Prior to diagnosis, I used to have very vivid dreams. In the last few months, I've started dreaming again. Nothing vivid, just boring dreams. Dreams about sitting at a table or watching a tree. Sometimes I wake up, after sleeping 7 hours and feel tired. I have to admit, I miss the sunrises, but not enough to set an alarm. 

My motor symptoms are still pretty well under control. If I sit too long, I have trouble standing and it takes a few steps to get myself straightened out. If I squat down, I have trouble getting back up, but some of this may be age related (arthritis.)  

I had a follow up appointment in Tucson, Arizona, with Dr. Sherman. I went off my medications, as instructed. I have been taking halves of carbi/levo-dopa 25/100's four times a day(for a total of two.) 

Dr. Sherman's nurse said, "You don't seem to have any visible outward Parkinson's symptoms, what were you like prior to DBS?" I laughed and gave her a card with this blog address on it and said, read and see.

Dr. Sherman noticed some dyskenisia in my left leg and suggested turning my DBS setting down .1, which I have since done. He also noticed my right arm doesn't swing as much as my left when I walk. He said my speech wasn't slurred, but definitely lower in volume. Other than what was noted above, he made no changes to my DBS settings.

I only took a total of one carbi/levo-dopa that day and all was okay, so now that's my new normal.

So, how am I doing? I'd say pretty darn good, considering I've had this darn disease close to 20 years!

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