I had to share this story. The leader of my support group, Dean Prescott, is a remarkable man. He has fairly advanced Parkinson's though he's still young. He has terrible trouble with walking, dyskinesia, and just basic mobility. He shares so much with us, so selflessly! Recently, he underwent DBS surgery, and kept us all informed on his progress. This is his most recent update:
"It was a short walk, as walks go. It had seemed so far away when they first made the announcement. It was hard to understand how this moment was already here. At this point I just wanted to be sure I was putting one foot in front of the other without tripping on Sarah's dress. The bridesmaids were were all in the room, waiting for their moment, while the groomsmen seated the guests. I peeked into the room to see my daughter in her dress and was stunned by the way she looked. "What do you think, grandpa?" Was asked by one of the bridesmaids. "Beautiful," was all I could say.
A light breeze chilled the guests as they waited patiently after being seated. They were treated to a view of evergreen trees made greener by the deep blue sky above and Lake Tahoe in the background below.
Suddenly it was time, wedding music began to play. The bridesmaids lined up with their partners and began the procession down the aisle until there was only the flower girl (Natalie, my granddaughter), the ring bearer and me and Sarah. A handsome young man, the ring bearer was having a hard time holding the pillow that held the ring. It would not stay balanced on the one hand while the other hand was holding on to the flower girl. I showed him how to bunch up the bottom of the pillow in his hand and he was ready to go. Down the aisle they went and then it was only me and Sarah.
It didn't seem possible that so much time had passed to bring us to this moment. Wasn't it just the other night that I was reading her a bedtime story and she was asking me to read it again and again.
We waited for the music to change again. Then one step at a time we proceeded as the faces in the audience began to appear. The seats were fuller now than when I had peeked out earlier. I kept my concentration on my gait as we walked slowly down the aisle to where the groom was standing, alongside the minister and the bridesmaids and the groomsmen. I shook his hand and kissed my daughter, just like the rehearsal. I found my seat, next to my wife and watched the rest of the ceremony.
It wouldn't seem like such a short walk would be such a big deal and thankfully it wasn't, but as little as a month earlier it might have been much different. The effects of Parkinson's disease and the medications used to treat it had reached a point where without medication, I could barely take a step; and with medication I could walk, but my right arm and leg would gyrate out of control for hours at a time.
The Deep Brain Stimulation Surgery that began six weeks earlier with two probes being implanted into my brain would reduce my dependence on medication, improve my basic level of ability, and reduce the side effects of the medications. How the procedure accomplishes even one of these functions, I don't understand.
Two weeks after the initial surgery they implanted the stimulator into my chest and connected it to the probes with wires just below the skin. They would not activate the stimulator until two weeks later, just two weeks before my daughter's wedding.
The initial adjustments with the stimulator are done with the patient off medication. That meant another night of trying to sleep while my legs twitched. This time it wasn't quite as bad. In fact I was able sleep some that night and I was able to walk slowly to where I was being tested the next day. I had expected to need a wheelchair.
They ran me through the usual tests before turning on the stimulator. First the box where they have the patient stand up straight, then lean in various directions, then the walls move in various directions, then floor moves in various directions, all with the goal of seeing where you lose your balance. Then there are more tests that are repeats of previous tests such as finger tapping, leg tapping, hand twisting and, of course walking.
Now it was time to turn the stimulator on and when they did I didn't feel any different. When they ran through the tests again, however, I immediately noticed a dramatic difference in my ability to perform them. They used the results to determine how to adjust the initial settings on the stimulator. In adjusting the stimulator, they have to allow for the effect of the medication. If they adjust the settings too high some of the old side effects may return.
The stimulator comes with a controller. When put up next to the implanted stimulator, the controller can turn the stimulator on and off and even up and down to a limited extent, but the major adjustments are done by the nurse who is trained to make adjustments using a separate controller that adjusts the strength and frequency of the signals being sent from the stimulator to the probes. The nurse showed us how to turn the stimulator on and off while we waited for the medication to take effect. There are certain circumstances where the stimulator needs to be turned off and other circumstances where the stimulator can be accidentally turned off and may need to be reactivated, so we both needed to know how to use it.
It has been eight weeks since the initial adjustment of the stimulator amd four weeks since I went in for a second adjustment. My next appointment is in two more months. I have been told that it can take up to six months before they get the ideal adjustment. Overall I have eperienced considerble improvement in some areas and have been frustrated with the lack of improvement in others. The biggest difference has been a reduction in the dyskinesia that had become very difficult to deal with. I have had good deal of improvement in getting in and out of chairs. My voice is stronger for the most part.
Getting a consistent stream of medication is still a problem. Carbidopa/levodopa is the most effective drug used for Parkinson's, but it has limitations. One is that there is no even delivery system. You take a pill and it slowly breaks down in the stomach (depending on what else is in there), gradually getting stronger until it reaches maximum effectiveness, then gradually slows down until you are due for your next dose in about four hours.
To improve the effectiveness of carbidopa/levodopa it comes in a "long acting" or "controlled release" formula that generally has the same effect but is spread over a longer period of time (4-6 hours).
To further complement the carbidopa/levodopa therapy there is a group of drugs called "agonists" that mimic the effect of carbidopa/levodopa. These drugs include "mirapex" and "requip". They help extend the effectiveness of carbidopa/levodopa. They have been helpful in allowing me to sleep through the night. However they have been linked to compulsive behavior in some cases. They generally are not strong enough to be used alone in advanced cases. The uptake on these drugs is also different from carbidopa/levodopa, further complicating the the dosage formula.
This may be an oversimplification of the situation, but I think it gives you a general idea of some of the problems in taking Parkinson's medications. The trick is to take enough to help get the patient moving, but not so much that they become dyskinetic and to make that situation (we'll call "normal") last as long as possible.
The DBS has helped in finding that spot, but there is still a ways to go."