After having Parkinson’s Disease now for 10 years I’ve always, always avoided the topic of Deep Brain Stimulation. My Neurologist has approached this topic with me on several occasions and I’ve always told him, NO! I had my doubts after attending a Medtronic seminar 9 years ago. And frankly, I was scared. I treasured my damaged brain, and I didn’t want anyone messing around in there – no matter how successful their track record was.
Now I’ve changed my tune. My tremors are worsening. My legs are becoming more rigid and walking is difficult. The frozen shoulder I’ve had the last year changed my view of “quality of life” so that I’ve come to realize that movement is a treasure. Being able to brush my hair again has been a joy, not just a relief. So, when I went to the Neurologist again two weeks ago, he brought up the subject. My meds aren’t working that well and I’m really at the end of the treatment regimen now. It’s time for me to consider DBS. So, my husband and I went to the monthly seminar at my Neurologist’s office where DBS patients, prospective patients, the Medtronic rep and my physical therapist were in attendance.
This time the news was different. There is a new way to deaden the scalp once the hair has been shaved. So, when the GPS screws are put in the scalp there’s not so much pain. Then the next day is when the actual Deep Brain Stimulation probe is inserted. There is a new sensor type thing on the end of the drill that senses when the skull material comes to an end so that they don’t drill into the brain material. That’s new and a relief. A week or so later is when the battery pack is put in my abdomen and the leads are put in the body from behind my ear all the way through my chest cavity to my abdomen and hooked to the battery pack. While that’s major surgery, it’s no different than the surgeries I’ve experienced for my spine or knees. I can do this. I think I’m almost ready.
There was a gentleman at the meeting who turned off his DBS and his tremors were as bad as mine. When he turned the remote back on – his DBS worked and his tremors stopped. I cried. I realized I don’t need to live like this. Deep Brain Stimulation is not a cure, but it does give me hope.
I work in an environment where I present to large groups of customers, usually over the internet, but sometimes at national trade shows. It’s come to my attention that my senior management is not allowing me to attend these large trade shows and has opted to send some of my colleagues, from other parts of the country where it’s not necessarily so convenient for them to attend. I asked my colleague if it’s because of my tremors and he wouldn’t answer me. I asked him again, and he ignored me a second time. This was all the confirmation I needed to let me know that it’s been discussed. My tremors have been a topic of conversation, one no one dares to bring up to me (probably because I’d sue the pants off of them!). But really, no one wants to approach me about how badly my tremors are progressing. I get it. I understand now that if I want to continue to work and be productive in this environment, I have to make a decision to address the tremors, if I can.
Today I saw this article and it reinforces what I know from the meeting I attended. Go here to read the article about Karen Clinkingbeard. She is from Baton Rouge, LA and this article is from WAFB – Channel 9. It will give you some information about a person who’s life has been changed.
Deciding to have Deep Brain Stimulation is only the first step. Now I have to be vetted my the Neurologist and the Neurosurgeon, and of course, deal with my insurance company and the financial burden of having this procedure done. I’ll keep you posted on progress. We all know this last year or so has been awful, and I haven’t blogged much. I am trying to do better. I hope you are doing well too.