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JBC + DBS: A Mostly-Love Story

Friday November 06, 2015

 

Full Names

 

Jeffery Brian Camp

 

Deep-Brain Stimulation

 

Street Names

 

Brian; Dad

 

Brain Surgery; DBS

 

Influence upon Social Events/Parties/Gatherings

 

Positive; Game-Changer

 

TBD; Game-Changer

 

D – Dad (Jeffery Brian Camp); BC – Bette Jane Camp

It’s Friday, October 23rd, in Mukilteo, Washington. I’m sitting beside my dad’s blue recliner. Luna, the cat, perches on the armrest. We both have some questions for him: she, in regards to her dinner; me, in regards to DBS.

BC: You’ve just had surgery on the 13th. Which number will that be? 

D: Um, five. Five or six.

BC: You don’t know for sure?

D: No, I’d have to count them out.

BC: Okay, let’s count them. The first one was the initial implant [of the electrode leads] in your brain. That was in Seattle?

Brian CampD: Yeah. I had the whole thing done. [That doctor] did one, and then I had the matching battery put in, and six months later he did the other side. Back then, in ‘05, some doctors were just doing one at a time. I had no luck; I had very poor placement, by the first doctor. So I saw another neurosurgeon and he thought he could provide better placement. And he did and he didn’t. This new doctor at another hospital — well, I had a wire poke out, on my neck, and it got infected. And I had to go and stay at the hospital. I don’t know if you remember?

BC: I do remember. That was in, what, ‘09?

D: No, that was ‘07. And so, then that lead me to Dr. Starr. I really insisted on going and seeing him.

BC: How did you hear about him?

D: Well, he was the one I wanted to go see. In the beginning. He was known nationally, and he was known as the best on the west coast.

BC: For DBS?

D: Yeah. Dr. Starr replaced the right [lead in my brain], and we thought that the left side would be okay. But it turned out the left side probably should have been replaced as well.

Luna meows. It’s a very particular, very hungry meow.

D: And so he just did the left side, recently. It was formerly in the STN part of the brain, and this time they put it in the GPi, a whole different part.

BC: So now the left lead is stimulating the GPi. Is that unprecedented? Is that a rare placement?

D: No, no. It’s usually done with older patients.

BC: Do you know what they stand for? GPi and STN?

D: Um, global platius...um…and substantial nucleus…thalamus.

Update: the scientific terms used outside of the Camp household are in fact subthalamic nucleus (STN) and global pallidum internum (GPi).

BC: Okay, to clarify: your first medical encounter with Dr. Starr was in ‘09, when he replaced the right lead in your brain. And at the time, both leads were stimulating the STN?

D: The one on the left—in all cases—is put in the part of the brain that controls the speaking and the vocabulary. And it kind of...bled over, and so I had slowly been losing my voice, and my ability to speak.

BC: And that’s because of the sheer presence of the lead? In that part of the brain?

D: Yeah. So then, I decided to go down to see Dr. Starr again. When you and I went down [this summer], that’s when [Dr. Starr and his team] checked it out, and decided to remove the lead from the STN.

BC: So, this is your tenth anniversary. With DBS.

D: Yeah. I never thought of it like that.

BC: Looking back over the past ten years—especially the last five or six, with such diminished speech—would you recommend DBS to other Parkinson’s patients?

D: Oh yeah. If I didn’t have DBS...well, you saw me last year. When just [the left battery] was shut off, I virtually became immobile, and severely restricted by stiffness and rigidity. Yeah, without it I wouldn’t be able to move.

BC: Of course, we know that Parkinson’s affects everyone so differently. So do you have any qualifications to your recommendation? “Yes, I recommend DBS, if your symptoms are like mine”?

D: Yeah. I mean, some people have a lot dyskinetic movement, so I know that that is often taken care of with DBS. I think that every individual is so different, that they’d have to choose a doctor, and approach a plan, and have an MRI and CAT scan, and decide on what DBS may or may not do for them.

BC: Back in 2005, did you talk to anybody that had been through it?

D: No, I didn’t. And I ended up with a doctor that really wasn’t...he was the only one in the area doing it at the time. And he’d only done it six or seven times. And his bedside manner was very poor. Just kind of rushed into it, you know?

BC: Yeah. But to think, you have so much to offer now, having been through what you’ve been through. Do you have any regrets?

D: No, no regrets. Just a long process, trying to get to this point. And now, hopefully this will last several years.

A pause in the interview—to feed Luna, at the very least—succeeds. Having this conversation is an incredible moment in time. It’s an evolution in our small family; it’s made all the greater, being collected and shared with other people affected by Parkinson’s disease.

In the second half, my dad elaborates on his day-to-day experience, post-surgery. We review his goals, from fitness to dating finesse. Stay tuned!

Bette JaneBette Jane
NWPF Guest Blogger

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