The Importance of PROPER DBS Programming

The one year anniversary of my DBS surgery came and went without any fanfare. There was no celebrating, no party, nothing. Why? Because I felt awful. I was having mood swings, I was sleeping way too much, I was grumpy, I was in pain. I was depressed. It seemed like all the humor was gone. This had been going on for months and was getting worse. My Parkinson's disease motor symptoms (tremor, rigidity, slowness) were okay, but I was miserable. I was convinced the surgery or the DBS settings were to blame. I even found myself having suicidal thoughts, but figured I'd screw up and make myself worse. I was beginning to regret having the surgery.

Then, I got an email from another lady with Parkinson's disease who also had the DBS surgery and she was experiencing similar personality changes. So, I went on some DBS Facebook groups that I belong to and asked if anyone had heard of the DBS settings causing depression in people who didn't have it prior. The answer was a resounding YES. My friend Gretchen called me and said I needed to find a good programmer immediately. She even suggested flying to Florida to see her programmer, but I thought I should be able to find someone closer.

Okay, now what do I do? I made an emergency appointment with a neurologist who could adjust my DBS settings, but he said he didn't think my depression was DBS related and suggested a psychiatrist and antidepressants. I tried a couple antidepressants, but they made me feel worse. 

In desperation, I called all the medical people I knew in Tucson, Arizona and the same name kept coming up: Dr. Scott Sherman. Well, it turns out that I was already scheduled to speak to a class of Dr. Sherman's first year medical students at the University of Arizona Medical School about my life with Parkinson's disease. So, I contacted the person who had arranged the speaking engagement and asked him if he would tell Dr. Sherman about my problem and ask if he could see me as a patient.

Dr. Sherman said yes. He actually called me himself and made an appointment for me the same day that I would be speaking to his students. Well, he moved my settings up to a different spot on the stems in my brain and within a few days, the difference was amazing. I had more energy, I felt more sociable, and the depression was gone. Most of the pain was gone, too! My gait was almost normal, the morning tremor in my right hand was gone and the rigidity and slowness I'd get every afternoon was also gone. I still have some speech issues; I drop consonants or speak too softly or quickly, but maybe this can also be fixed with some program tweaking.

Dr Scott Sherman and YumaBev

DBS can be wonderful for people with Parkinson's and I now realize that finding someone who can properly program the unit is just as important (or maybe more important) as finding a great surgeon to implant it. It was a 250+ mile drive each way to find my perfect programmer, but it was well worth it.

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Apathy and Parkinson's Disease

Definition of Apathy: 
   1. Lack of passion, emotion, excitement
   2. Lack of interest, a state of indifference
   3. Lack of motivation

Apathy can be a major non-motor symptom of Parkinson's disease. Combine it with fatigue, another major non-motor symptom, and it's no wonder we Parkies can be seen as lazy, disinterested or uncaring by friends, family and even strangers. 

What causes apathy in people with Parkinson's? It is believed to be due to chemical changes in the basal ganglia part of the brain. Dopamine is not only the primary neurotransmitter for motor control and movement, but it is also necessary for goal-oriented behavior, enjoyment and motivation. In other words, dopamine is our "feel good" chemical and as the dopamine levels in our brain get less and less, we no longer enjoy the things we used to and we become more apathetic. It's not that we DON'T care, it's that we CAN'T care. Our dopamine deprived brains just don't work like they used to.

I am just as apathetic as the rest of you. I used to enjoy going to karaoke, but it's in the evening and by that time of day, I don't feel like going out. After dinner, it's easier to put on my pajamas and watch TV instead. I was never into card playing or crafts, and I'm not a reader, so I am bored, a lot. I have a problem with my neck/shoulder which is aggravated by computer use, so I don't even spend much time online anymore. I'm not a cook and cleaning also aggravates my shoulder, so mostly, I do nothing (thank goodness my Wonderful Husband cooks and helps with the cleaning.) I have closets full of clothes I don't wear, so I can't even get interested in going shopping. 

I did, however, start walking again. I walk alone in the mornings and with a neighbor in the afternoon. I used to enjoy talking on my walks, but now I mostly listen, as I have developed some speech problems and I can tell people have a hard time understanding me. 

About the only things I DO look forward to are social interactions with friends and neighbors. I usually don't say much (the speech thing), but I enjoy listening. I have always enjoyed being around people and I still do. 

So, next time a social invite comes your way, say YES! Force yourself to get up and get out and get moving. You might actually find yourself ENJOYING it.