Hi..I am Krishna Ayala and I've had Parkinson's Disease for the past 12 years. Of late my dyskinesias got so bad that I was beginning to hurt myself with them. That prompted me to opt for surgery. And I did undergo surgery in the first week of Sept. 2000. Needless to say my condition improved. Thanks to the surgical team of Dr. Kelly, Dr.Beric and Dr.Sterio, my life has a semblance of normality that was lacking before.

At the time that I am writing this, four months after surgery I'm still going for stimulation. Up until 2 months ago I did have serious doubts as to whether I'd done the right thing by opting for the surgical procedure called DBS of the STN, but not so anymore. What follows is an outline of my weekly experiences after the stimulators were turned on.

At the outset, let me say that what applies to me need not necessarily be true for others. each person responds differently to stimulation. This is purely based on what happened with me. Roughly 2 weeks after surgery my stimulators were turned on and both were set at 1.0 volts each. I was asked to continue taking my medicines i.e. 1/8 sinemet (25/100) and 1/4 mirapex (1 mg) every two hours. The next day, I waited from until 9 am to 5pm for the dose to kick in. And then the 'on' time lasted for only half an hour. Out of sheer frustration I upped the dosage and took my meds every hour instead of every two hours. The meds refused to kick in.

If only the dose would kick in when it was supposed to there wouldn't be so much desperation on my part. It isn't the easiest thing in the world to be in an 'off' state. Believe me, my 'off's are a nightmare. By the time it was 8:30pm and I was still in 'off' mode. I took my third dose of meds. Then out of the blue the sinemet kicked in and boy was I dyskinetic. I was jumping all over the place, unable to restrain myself. I screamed for help asking my husband to come and hold me so I wouldn't hurt myself. I was petrified because of those wild movements, I thought I might disconnect the stimulators or dislodge the electrodes. By now I was rolling on the floor, my husband trying to hold my head to keep me from rolling, my son holding my legs. It took four people to hold me down that night and even then I was thrashing around. I told my husband to turn off the stimulators until my thrashing subsided. Which he promptly did and then half hour later the dyskinesias stopped and back to 'off' state again.

If you think I'm being dramatic, let me assure you I'm not. Ask Patti or Anne and they'll vouch for I've just said.

Somehow, the week passed and I was glad when it was time to go for another raise in stimulation. I went to see Patti hoping to get a raise in stimulation levels. To my dismay I found out that my left side stimulator was turned 'off' and my right side had been off for more than 50% of the time. I was told that the stimulators are not supposed to be turned off at all because it was hard to tell how I was responding to them. I wish Medtronics would come up with a foolproof way to check that the stimulators are 'on'. It can be hard to tell from the AM radio for sure whether the stimulators are 'on' or 'off'. Specially at low levels of stimulation, because even when 'on' one is not optimally tuned yet to be able to distinguish that the thing is 'on'. So the stimulator was turned back 'on' and the level of stimulation kept at the same level and I was asked to continue at the same dosage of meds except now it was minus the mirapex because it heightened my dyskinesias when the meds did kick in after a delayed effect.

I have never counted the hours and days as I did in those early weeks of stimulation. Most of the day was spent in a miserable 'off' state. And since I tried to keep the dyskinesias away, I had to control the sinemet intake by not taking an eight every two hours. I was beginning to wonder if the whole process would ever work for me or would I be the first failure case reported.

The third week, I was praying that my stimulators would have been 'on' 100% of the time. I made sure that I did not get anywhere near the magnets. I was elated when I found out that they had been 'on' all the time. Finally, maybe this time the level of stimulation could be raised high enough so it would start sustaining itself. Patti raised me to 1.3 volts each side. for about 20 mins I did not feel a thing.

Then I felt my 'on' state kicking in. I went out of the room walking to see if I could locate Patti and tell her that I was 'on'. Soon I found her and also found myself getting dizzy with dyskinesia. In a few minutes my eyes were spinning around and it was a real effort to keep walking to get back to the room. Patti followed me concerned that I'd hurt myself. By the time I reached the room I was climbing the furniture there, I was so dyskinetic! Hastily patti turned me off and waited till I steadied down before raising me a cautious 0.1 volts to 1.1 volts. Then I was asked to take my 1/8th of a sinemet. God, can you imagine my frustration...my third week of stimulation and I was still at 1.1 volts. How come I was the only one sensitive to both sinemet and a jump in stimulation levels?

By now, I was having serious doubts about having the surgery done. Other patients had told me that by the third week they had started to feel wonderful. So what was it in my case that didn't work? Somehow the week passed by with most of it being spent in the 'off' state. To top it my menstrual cycle began which made for worse 'off' times and more intake of sinemet to be in an 'on' state. The sinemet took forever to kick in so without telling Patti I took a 1/4 of a mirapex along with the sinemet. Then later I did tell Patti about having taken the mirapex and obviously I got her angry. Because she had warned me not to add any medications without first informing her or Dr. Beric. But my feeling was so long as I was 'on' and not dyskinetic it was ok to take the 1/4 mirapex with an 1/8 of a sinemet.

The following week I went in to see Patti rather hesitantly because I'd pretty much upset her by not sticking to the sinemet alone. I don't want to justify myself by saying I'd done the right thing, because looking back now I know how important it is to stick to the dosage of meds suggested by them. But then it was I who had to deal with the 'off' state. Dr. Sterio came in with Patti and I asked him why this wasn't working out for me as it seemed to have for the other patients. He wasn't about to give up on me yet. He said they'd try a different set of electrodes and see what would happen. Then he raised the level of stimulation until I was 'on' on stimulation alone.

For once, after surgery I thought I was beginning to see light at the end of the tunnel. I went back home elated that I was 'on' without taking any sinemet. But my elation was short-lived. Soon I was freezing and in an 'off' state. Back to square one again and trying to find out how much sinemet I could take without getting dyskinetic. That is the hardest part of it all...trying to find an optimal dose at which to function without having to dance with dyskinesia all over. Well, it isn't for nothing they say that this disease is not easy to treat.

So after spending another frustrating week in a mostly 'off' state, I showed up with a rather dejected face at Patti's office the next week. She checked to make sure that the stimulators had been 'on' for 100% of the time before raising my level of stimulation. She tried for a while and I think she went pretty high up and still she saw me not responding to it. Then she did something which made me come into an 'on' state. Later, she told me that she'd changed the electrodes back to the original ones because I hadn't responded as expected on the changed set of electrodes. I sneaked a look at the voltage settings and saw that they were set at 1.8 volts and 2.0 volts.

I was already into my sixth week of stimulation now, and on the way back home, I was praying that the stimulation would sustain itself. I was still 'on' when I reached home. For once my hopes were raised again and I thought I was beginning to see light at the end of the tunnel again. The day passed with my 'off' state not as bad as before. This 'off' state was easier to handle than the ones I'd been experiencing. I tried to keep the intake of sinemet to as low a dosage as possible, because of the delayed way in which it worked for me making me prone to dyskinesia. I didn't want to spoil anything now as long as my 'off's were manageable and my 'on's not dyskinetic. Unless the freezing became really bad or I was walking on my toes, when I took 1/4 sinemet as opposed to an 1/8th every 2 hours.

Week seven of stimulation. For the first time, I was smiling in Patti's office, happy about the whole thing. She was also pleased that I'd finally turned the corner. Even she was frustrated and puzzled about my response time. But now that the worst was over, she could concentrate on raising my stimulation levels higher now. But any higher raise than 0.2 volts would make me dykinetic in her office, resulting in my asking her to lower the level of stimulation. Because I didn't want to be dyskinetic again at home and have to turn the stimulators 'off'.

From this point on, my road to recovery became much easier. Since my 'off's weren't as bad as before and as long as I was up on my feet by myself without assistance, I was happy. But when on my feet for too long, I feel very tired. I find that I have to take frequent breaks and a short nap to be up and around until the evening. At times I feel like there is a tight band around my head, and my right leg breaks into tremor. But I hesitate to take much more than a 1/4 of a sinemet every 2-3 hours because the delayed effect that sinemet has on me still tends to make me dyskinetic. So, I try and avoid the sinemet as much as possible until I get frustrated with the sense of a loss-of-balance or I start to freeze a bit in my turns or I'm sick of walking on my toes. Yes, I think it is better to take breaks during the day rather than be dyskinetic with sinemet. So, I'll take the reduced energy and the feeling of tightness in my chest any day rather than dance around with dyskinesia.

So now, four and a half months later, I'm still going for a raise in stimulation. And I'd certainly recommend this surgery to any PD patient whose condition is bad. And though the surgery itself was a breeze (Dr.Kelly and Dr.Beric might be saying 'yeah right!' to that..:)), the real test is when the stimulators are turned on and the medicines are drastically reduced. It can be a really hard time for patients with bad 'off's. But it is important to keep as much to the schedule of medications suggested by the surgical follow-up team and to be in as much of an 'off' state as one can possibly be before going in for a raise in stimulation. Because though one might just be in 'off' state when you reach the office to get a raise in stimulation, you might get dyskinetic when turned on higher, if you have been 'off' for less than an hour.

Again, all this is based on my experience of it and may or may not hold true for other patients. But I thought any patient going through a rough first 2-3 weeks of stimulation might find solace in what I wrote when they read that they are not alone in having doubts about the whole surgical process when in the early stages of stimulation. It can be hard initially, but eventually you get on the road to recovery.