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JBC + DBS: A Mostly-Love Story (Continued)

Friday December 04, 2015

Bette Janes Cat

Besides a knack for receiving brain surgeries, my dad is now proficient in sheltering animals. Luna (shown above) is his latest tenant. She’s got phenomenal green eyes and a white moon on her chest. Maybe my dad considers it his fatherly duty, this taking-in of his adult kids’ pets. Maybe he’s realized a veterinary destiny. Either way—in symmetry with his Parkinson’s patienthood—he does it with grace.

In the first half of our interview, my dad and I haphazardly recounted his history with DBS. I’ve included the last lines where we broke off, but I encourage a once-over of that initial post.

BC: [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.

BC: Can you describe what this point is? What this point means to you?

D: Well, it means...the ability to move, and speak, and stretch, and live life at a somewhat normal pace.

BC: What do you mean by normal?

D: You know. Getting up, and not having to rush to the medicine. And sinemet [carbidopa/levodopa] is so up-and-down.

BC: So, normal is not having to be too dependent on the medicine. Is that where your thoughts go, when you wake up?

D: Not now. I’m taking about 25% of what I was taking.

BC: Wow. What’s the exact dosage difference?

D: [Before this recent surgery,] I was taking about 1.5 pills, 2100 milligrams, and now I’m taking .5 of 2100 milligrams. I’m not sure if I even need to take that much.

BC: And that’s a blessing.

D: Medicine and I never get along. In the hospital [at UCSF], I didn’t tell them the truth—that I had headaches and nausea [after the surgery]—because the medicine they would put in my IV would make me throw up. And I get that feeling every time I take a new medicine, or [whenever I’m dealing] with agonists or assistant medicines to the sinemet. I’ve never had any luck. My friend Rich has often noticed that I really struggle with the medicine, while he’s really benefitted.

BC: Everyone’s so different. For you, “this point” is some freedom from medication?

D: Yeah, and the on and off periods.

BC: Smoother transitions to being off and on. It’s true, just a week ago, your off was off. It seemed like a landslide between them. Where would you say you’re at right now, on a scale of 1-10, 10 being on?

D: I just took a pill. A half-pill of the 2100 milli-...milligrams. And I’m going through the down period now. So I feel about…a 6.

BC: Where do you expect to be, when the pill has fully kicked in?

D: Probably like a 9. So far...I’ve not felt the urgency [for medicine], you know?

BC: Yeah. What’s another way of describing how you feel? Post-surgery?

D: I feel limber, and more agile, stronger. I’m still, still dealing with some habits, with my voice. I’m still doing the occasional thumbs-up (laughs). And using my eyes to…

BC: ...to express [yourself]?

D: Yeah. And those are old habits, you know?

BC: It was kind of nice, it was like you picked up another language. Another mode of communication.

D: Yeah, I could express myself with a smile.

BC: It could mean a lot to those who knew you, and who took the time. So. Jeffery Brian Camp and Deep Brain Stimulation. A Mostly-Love Story. Would you agree?

D: Yes, I guess. It’s saved me a lot of pain, and a lot of rigidity, and stiffness, and immobility, and probably some depression and sadness.

BC: That’s something you’re still aware of, and still feeling.

D: Yeah. I’m still alone in this house, so. Some nights and days are more difficult than others.

BC: What does mental health mean to you?

D: Um. Mental health means...feeling happier, and stronger, and having the ability to get out and do things and see things…

BC: So mental health—I’m getting that it’s directly related to physical health.

D: Yeah.

BC: We’re learning that we have to treat how we feel within our minds, emotionally, as how we feel physically. That depression, that mental health...no one is immune to it.

D: No, no. And it’s tough, you know. You just, at least for me, I just know that I gotta fight through it. And not succumb to it.

BC: And maybe also recognizing that it’s a point in time. That it’s a feeling. You know, just like you sprained your ankle, so it’s going to be swollen for a bit—what can you do to promote its healing? Or, what can you do ‘til it’s healed?

D: Yeah. Just don’t give up. [There were] many a day and many a night that I just counted down to my surgery. And I just fought through some of the difficult times, thinking about the outcome of the surgery. And even though I never told anybody, I always thought it would work out fine.

BC: You had…a kind of faith?

D: Yeah. I was certain that there would be no other outcome but the one that I got. And part of that was I trusted my doctors. And that was a big help.

BC: And now, in view of feeling more limber, agile, with improved speech, what do you see on your horizon?

D: Well, I’d like to get into the best shape that I can possibly get into.

BC: As your oldest kid, I haven’t heard you say anything like that in a long time.

D: Well, I didn’t think I could. It was so painful, just to even go out on a walk. The feet shuffling, and dragging. Yesterday the walk was very smooth.

BC: And the fact that you can even want to be in the best shape, is huge.

D: Yes. And, you know, my secret ambition is to get a girlfriend.

BC: I don’t think that’s very secret at all (laughs). [My brother] Jamie said it was one of the first things you told him. First, breakfast; then, girlfriend.

D: (laughs) Yeah, you know. I still have symptoms of Parkinson’s, so. I’m gonna be a little awkward, or...probably people are going to be a little put-off.

BC: Fortunately for you, you’re a naturally confident guy. You know? You really are. (laughs)

D: (smiles) I don’t know. I just try.

BC: And that’s kind of what’s on the horizon, then. Just trying. Making a point to appreciate the fact that you...feel possibility, for the first time in a long time.

D: Yeah.

Luna meows.

 

 

Bette JaneBette Jane
NWPF Guest Blogger

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