Total Pageviews

Monday, January 27, 2014

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.

Clicking on the colored words will open a new window and take you to a different story or link.


  1. So happy to hear you found someone to get your setting right! I am so fortunate to have only a 20 minute drive to one of the best surgeons (or so everyone has been saying) around and I hope I hear the same for the programming team. Keep up the good fight.


  2. I had a great programmer, she was actually the wife of my surgeon, but in 6 years of tweaking and testing, I am still fighting daily bouts of dystonia and dyskinesia, and another symptom that I call "restless exhaustive" mode, where my brain turns to oatmeal, and l feel like I am encased in jello. And now my programmer has retired and the new fellow has no idea what to try next for me. I have had the DBS turned almost off for a couple of years now. Maybe I should try to get some advice on the forums that you mentioned.

  3. Great story. I had DBS for Cluster Headaches aka Suicide Headaches. I am haing near identicle symptoms. I have an incredible surgeon working closely with me to help me.
    Where can I get a DBS shirt 2xl ? thank you

  4. Great Bev! So much like Ken's !! We are hoping soon - esp Ken to get the "new" programming done!! As always, you explain it sooo well!!

  5. I love this! I've met people with depression and I firmly believe settings makes all the difference. If I'm crying I turn off and the crying stops.
    Thank you for writing your story!

  6. I am grateful to you for writing and posting this. I too am a patient who has had DBS -- bilaterally. This is such a good reminder of the importance of proper settings and also points out the various symptoms it could improve that may not be the first thought or expectation. Great!

  7. Bev, you always are attacking the tough issues...bringing the truth out into the light. I admire all of you for your courage to proceed in having this done but, me, I'm not convinced it is for me. I was scheduled for DBS last October but backed out after attending WPC in Montreal. I am tired of the approach used in the US to solve PD problems. There has to be a better way!

  8. Another great blog! I'm so glad that you are feeling better now, and that changing the settings helped. You are a remarkable, fantastic woman, and I feel so blessed to know you. I have learned so much from you! Anna @ NPF

  9. You know to me the most important take away of your telling of this? How important OUR PD CONNECTIONS amongst ourselves is .... The best science and technology and surgery means diddly squat without the right resources. I'm actually shocked that your surgeon didn't have a programmer assigned to you - how in the world did this step get missed? It's appalling in my mind. Bravo for you for not giving up and then for taking the time to share. You are amazing. I am sending this to someone I know and love who recently had DBS in another country to make sure he is aware of this. Thanks so much, Bev. You rock!

  10. Thanks Bev (Robin sent me the link)... I think that this is a great reminder that as PWP (DBS or not) we need to take control of our care. If we leave IT (IT being a new sympton, a side affect, or in your case a DBS setting) alone people in particular the medical fraternity will think we are ok. If I've learnt one thing it's that this damm disease never stays still, and the only way to counter that is to take as much control of our health as we can and be as relentless in seeking solutions and making the best of what we have got. I for one will be having a long chat with my Movement Disorder Nurse and Neurologist about my settings. And what I can do to test variations....
    Bless you for all you do. Andy

  11. Just read your great post! This is the sort of thing I hear all the time, Medtronic! The real need for DBS Parkinson's programmers for all devices. Too many patients left behind. I hear horrors of Medtronic patients left out due to lack of experienced programmers & insurance. DBS can be such a boon, but not until re-tweaking.
    Lisa via Twitter

  12. Sadly, the old joke "Take two aspirin and call me in the morning" has become "Take these antidepressants and call me in six months" in a lot of cases.
    So glad you found a doctor to help you. Happy trails😊