Programming a Parkie

Lip curling upwards

I went back to Tucson, Arizona (450+ miles round trip) for my first official DBS programming about ten days ago. Since my appointment wasn't until 2 pm, I took my morning dose of carbi/levodopa and ropinirole, but skipped the second dose, which was due at 11 am. By appointment time; a little rigidity and slowness had returned, but my face was the most affected. My upper lip was doing a weird curling upwards thing (almost like Elvis).

Programmer controller

Stephanie, the programmer, checked my blood pressure (it was fine) and then got out her programming box and did some "is everything working" tests. She asked me how I was doing, how I felt, what medications I was taking now, and what Parkinson's symptoms I was having. I told her my "goal" was to get off all oral medications completely. She said that was the wrong attitude to have and that my "goal" should be to feel as good as I can all day, even if it requires some oral medications. So, I got a new attitude!

My remote

My DBS unit comes with a remote control and all I could do, so far, was turn it on or off. Stephanie hooked up the antennae and showed me how to adjust the settings myself, within limitations she set. Since the right side of your brain controls the left side of your body and vice versa, the controller is designed to mimic your body, so when I look at it, the left number is for my left side and the right number is for the right side of my body. It is less confusing for us that way.

My remote with antennae

The antenna clips on to my shirt and must be positioned directly over the unit in my chest in order to work. Once it "connects" I can see my current settings, battery level and status. I can then turn each side up or down. She set limits, so I can't zap myself. When I walked in to her office, my left side was set at 1.0 and the right at 1.2. When she was done, my settings were at 1.2 and 1.4 and the rigidity and slowness were gone, but my face still felt strange, so I went ahead and took another carbi/levodopa and ropinirole. She said I might want to put the settings back to where she started if I got dyskinesia or other side effects and then gradually move them upwards over a few days. She said, "You know best how you feel."  

My current settings

As my brain continues to heal from the trauma of the surgery, adjustments will need to be made. Since my appointment, I have played with my settings and oral medications. I am now down to three oral doses a day and my settings are still at 1.2 and 1.4. It will be a slow process requiring several more trips to Tucson, but I am very happy with my results. I have almost no rigidity or slowness and only a slight tremor first thing in the morning. My upper lip still does the Elvis curl, but the oral medications relieve that. 

Even though my motor symptoms have almost disappeared and people (including my beloved Dr. Z) say, "You don't look like you have Parkinson's anymore," I still HAVE Parkinson's and still find my Energeezer Battery running out of juice. So, I have learned to pace myself and not overdue it. 

The bottom line; would I do it over again? The answer is a definite YES. Besides, you can't imagine the fun I am having. I tell friends about the DBS, how I am now "electrified" and then when they hug me, I say, "Bzzzt" and make them jump. Nice to know I haven't lost my sense of humor.

New electrified YumaBev

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Parkinson's DBS Surgery: The Results

Total miles driven:                         2,758
Gas for six trips to Tucson:           $489.87
Four nights in a hotel:                   $402.11
My co-pays for everything:           $970.00
Amount my Insurance paid:      $26,672.77
Price for the Neurostimulator:   $43.929.87

No more foot cramps:           PRICELESS
Sleeping through the night:   PRICELESS
Feeling ON all a day:             PRICELESS
No dyskinesia:                      PRICELESS


Would I do it again? Absolutely.
Just look at the before video:

and the after video:

I am sleeping longer, but I still get tired during the day. My arms and legs don't feel heavy, I just get sleepy. I have had two surgeries in less than three weeks, so my body is still recuperating. Dr. Norton just turned the unit on and set it very low, so I know it will be better when I go back for detailed programming in two weeks. I have cut back on my medication by about half already and all of the side effects I was having are gone. I am a very, very Happy Parkie.

You can find all my videos on my YouTube channel:

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

Parkinson's DBS Surgery: YumaBev Gets Turned On

Friday November 3,2012:
I was up at 4:30 am and we left at 7:30 am. The drive to Tucson was uneventful, we stopped for an early lunch and then went to Dr. Norton's office. He carefully removed all the stitches and said it all looked good. Then he turned the neurostimulator on and began the first programming (it will need adjusting every few weeks for a while). 

I had taken my usual 6 am and 9 am medications, but had not taken the noon pill, so I had some rigidity present. The rigidity on my left side disappeared immediately and has not returned. The right side was a little trickier, as it is my most affected side. At first I felt nothing, then my right leg and foot began to jump around and dance (dyskinesia), so he turned it down.

I still had some dyskinesia in my right leg, but the rest of my right side felt good, no rigidity. He told me that he liked to take it slow with the programming, since my brain and body was still healing from the trauma of the surgeries. He said that I should probably space my medicines at four hour intervals instead of three and if the dyskinesia in my right leg/foot got bothersome, to just turn the unit off for an hour or so.

We left and headed back to Yuma. On the way home, I took one carbi/levodopa pill. We stopped at the RV park where I used to live and said hello to all my friends who sing karaoke. I even sang a song for them. I felt good, very good, but I was tired and hungry so we didn't stay long. Once we got home, I ate dinner and relaxed. I took one more carbi/levodopa pill and went to bed around 10 pm. My right leg/foot was still a bit jumpy and I almost considered turning the unit off overnight, but I did not.

Saturday November 4, 2012:
I slept until 8 am and woke up feeling very good. I took a carbi/levodopa pill about 9:30 am, though I did not think I needed it. I spent the rest of the day with my Wonderful Husband and our neighbors, Willie and Sharon (The ones with the blooming cactus). We went out for lunch then to two car shows and I felt good. I took pills with me, but never felt like I needed them, so I did not take any. We then went over to George & Freida's for dinner and I had no trouble using a fork or cutting my meat. We finally came home around 8 pm, and I was tired, but still felt pretty good. I took another carbi/levodopa pill and went to bed around 10:30 pm.

Sunday November 5, 2012
I slept until 7:30 am and woke up feeling good. I had a little bit of stiffness in my neck and jaw, but otherwise, I felt good. I took a carbi/levodopa pill right after breakfast. I felt sleepy, so I took a little nap before lunch. It is now 2 pm and I feel fine. No tremors, no rigidity, no slowness. I am going to take another carbi/levodopa pill right now, just to be on the safe side.

So, to sum things up, I used to take six carbi/levodopa pills a day and spent most of the day in an OFF state. On Friday, I took four, Saturday I took two and today I have only taken two and have been ON all day. I am pretty sure it can only get better. 

Parkinson's DBS Surgery: Part 4, The Day Before Turn On

It has been two weeks since they drilled holes in my head and one week since they stuck the generator unit in my upper right chest and ran the wires up to the leads in my brain, so here is an update. 

The stitches in my scalp are itching like crazy and I am trying not to scratch at them. I have been told I look like I have a little braid across my head or that I look like a baby calf who has just has his horns cut off (moo). I am still a bit sore behind my right ear where the wires are run under the skin, but I don't "feel" the wires moving around as others have told me they do. There are still marks on my skin from the EKG pads they forgot to take off me. 

Mark on skin from EKG pad

Most of the bruising from the implant area is gone and I don't think the scar will be too bad. The generator is shaped like a small deck of cards and the corner of the unit near my underarm sticks out a bit and makes shaving a little tricky (maybe the engineers can make the units rounder in the future). I am able to sleep on my right side without any problem.

Now for my Parkinson's symptoms. I am back on my pre-surgery medications and dosing schedule, every three hours from wake up to bed time. I am moving very stiffly and slowly for most of the morning and sometimes into early afternoon. The good news is that I haven't had a single foot cramp since the first surgery. I go back to Dr. Norton tomorrow for my follow-up appointment. My guess is that he will remove the stitches and turn the unit on. I don't know what will happen after that, but I will let you know.