DBS: An Update, Three Years Later

October 18, 2015 is THREE years since Dr. Norton made me a member of the exclusive "Yes, I do have holes in my head" club. So, the big question is...How I am doing?

First, the positives from my DBS for Parkinson's disease surgery:

My sense of humor is still intact! My witty quips take a lot longer to find their way from my brain to my mouth, and sometimes the delay and my slurred speech makes them funnier. 

My main Parkinson's disease motor symptoms are under control: Tremor is gone, unless I'm under extreme stress. Slowness of movement (bradykinesia) only happens when I am very tired. Rigidity only happens if I stay in the same position too long or get tired.  

I am still taking carbi/levodopa medicine. Prior to surgery, I was taking five or six 25/100's per day. Now I take a total of two, cut into halves, primarily for speech and that ugly upper lip curling thing.

My DBS settings are very low, so my generator battery should last at least five years.

The small amount of hair they shaved off has just about caught up to my overall length, but my Wonderful Husband (who cuts my hair) still hasn't got used to the weird bumps on the top of my head and behind my right ear. They really do feel like I'm about to sprout horns or antennae. 

I am sleeping well and an average of 8 hours a night. I know I must dream, and sometimes try to remember them as I waken, but by the time I get out of bed, the memory is gone completely.

On a secondary health note, my third post breast cancer mammogram was okay, so that is very good news.

Now for the negatives:

Fatigue is still a problem. It can come on suddenly; with little warning and when it does, I am done. I must stop what I am doing and rest. When it happens, it feels like I'm wearing lead-lined clothing, every part of my body feels heavy. Sleep usually is the best way to fix this problem, so naps are a part of my daily routine. 

Speech: My speech varies between almost normal to unintelligible depending on my medicine cycle and the situation. My mouth just doesn't work right. I drop consonants in the beginning of words or syllables in the middle. For instance "Are you ready for breakfast" may sound like "eryu eady fo eakfass." My Wonderful Husband has become quite adept at deciphering what I am trying to say.

The volume varies as well. The thing I miss most is the loss of inflection and tone. I can speak clearly, if I shout or want to sound like a robot, but it's hard to remember to speak that way ALL the time. And who would want to? 

Give me a microphone, however, such as when I am speaking in public or at our support group meetings and I can force myself to speak clearly. Doing this requires all my brain power and afterwards, I am totally exhausted. I never thought that talking would be such hard work. 

And yes, I know all about the LSVT-LOUD® program, but it's not available locally as outpatient therapy and even if it was, I couldn't afford the co-pays. 

Multitasking: I find I can no longer multitask. I no longer have multiple tabs open on my PC, I must do things one at a time. It takes me longer to figure a 20% tip, when it used to be automatic. I must never leave the stove if I am cooking something. I cannot type a blog story while the TV is on. I have turned the Bluetooth off in my car and now let the phone go to voicemail if I am driving. The built in GPS in my brain is still intact, so I have no trouble finding my way around town or even in big cities. But the radio must be turned off. 

Cognitive issues: My short term memory is worsening. My facial and name recognition, which was never good to begin with, is awful. I run into people who know me and I don't have a clue who they are. They may not even look familiar. This is especially true if I see them out of context (i.e. seeing someone from the support group at the grocery store). That being said, I still know and recognize my close friends and family and I can remember their names and birth dates. The good thing is I can watch a movie that I know I have seen sometime in the past and not remember how it ends. This has made my TV viewing more pleasurable. 

Balance: Braking is still a problem, so I am extra careful stepping off curbs or walking down inclines. The other balance problems are improving with each exercise class I attend. 

The question I get asked the most is...Would I have the DBS surgery again?

My answer is a resounding YES! 

All the negatives listed above may have happened even without the surgery. They can all be part of the normal progression of Parkinson's disease. I know for certain my motor symptoms would definitely be much worse without the surgery. 

Let's let the videos speak for themselves.

Before DBS video:

Three years later video:

To watch all my videos, visit my YouTube channel:

https://www.youtube.com/user/ParkinsonsHumor

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