£16,000 a year: the hidden price of Parkinson’s
Research reveals the monetary cost of Parkinson’s for UK familiesREAD MORE
Millions worldwide tuned in for TV programme ‘Brain Surgery Live’, the first of its kind to be aired live on US television. We catch up with Parkinson’s patient, Greg Grindley, one year after viewers watched in awe as his vigorous tremors stopped for the first time in 10 years
Billed by National Geographic as a “modern-day medical marvel”, Greg Grindley’s deep brain stimulation (DBS) surgery to treat his Parkinson’s disease was the first to be broadcast live on US national television. One year on, Greg, 50, has experienced dramatic changes to his life and now looks forward to enjoying the finer things – like dancing with his wife again. In this exclusive interview with Greg and wife, Crystal, we hear about life before DBS, his road to recovery post-surgery and whether he has any regrets.
When did you first consider having deep brain stimulation?
Greg Grindley: My dyskinesia – involuntary muscle movements – had got so bad that I couldn’t drive and it was interrupting my life to the point where it was not a good thing. Over a year ago, I was at the hospital for a back problem unrelated to my Parkinson’s and there was a doctor who was doing his rounds accompanied by some interns. He presented my case to them and explained my Parkinson’s symptoms. He continued explaining that the dyskinesia I was experiencing wasn’t due to Parkinson’s, but was actually a side effect of the medication I was taking.
Crystal Grindley: That was the first time we had somebody explain to us that these sudden uncontrollable movements were in fact caused by his medicine, as opposed to a symptom of Parkinson’s disease itself. Before that we thought it was simply a progression of the disease.
GG: One of my neurologists had spoken about DBS for about six years, but I didn’t want anything to do with it, until the dyskinesia was explained in that way to us by the doctor. So we decided to go ahead and try the brain surgery.
How did the live broadcast come about?
CG: We talked to the neurologist who asked if we would do the surgery live on TV. We eventually agreed to do it, but took a couple weeks to mull over the decision…
GG: Three out of four people who could benefit from this surgery never even hear about it. It had reached the point where it was pretty bad for me, so I figured if I can save somebody else that heartache and pain – by raising awareness of the procedure on live TV – then go for it! And the opportunity to not have to put with the dyskinesia anymore would be pretty awesome!
Did you have any nerves in the lead-up to the surgery?
GG: I wasn’t that nervous. I just figured God is God, and we’ll just roll with it. Once I’ve set my mind to something, it’s pretty much made up. Crystal had more problems than I did with the surgery actually!
CG: We had discussed the surgery before between ourselves and with Greg’s friend who had DBS done before. His friend had been on internet forums and read that people’s personalities had completely changed after the surgery – now they just sit a corner and don’t talk anymore. So, I had one moment when I completely lost it, and thought to myself “What if you wake up and don’t like me any more?” Greg consoled me, but chuckled to himself at the same time!
What was it like being on TV?
GG: I wasn’t even thinking about the cameras to be honest!
CG: I gave him a little heckle at the end because he was meant to send me a message on the iPad during the surgery while he was conscious and I never got it. They handed me his iPad afterwards and I told him he forgot to click ‘send’, and he was like, “Give me a break! I just had brain surgery!”
What were you focusing on during the operation?
GG: I was paying more attention to the speakers by my ears. You can actually hear Parkinson’s – you can hear the neurons firing and the distortion. It sounds like bad radio static, but I could hear Parkinson’s interrupting the neurons from firing. I thought that was the coolest thing!
CG: Yes, that’s what Dr Walter (the lead surgeon) was listening to. They insert a device into the brain that records the sounds and they can tell by the differentiation of the sound that they are in the right spot, and then they drop the electrodes in place.
Could you feel anything while they were operating on you?
GG: I couldn’t feel a thing. When they first turned on the electricity, I had some sensations at the tip of my tongue and it took about an hour to find the right voltage settings.
And when they flicked the switch?
GG: That was awesome! They turned the system on and everything just stopped. Even the internal shaking, which is hard to describe to somebody who isn’t affected. A few months ago at my post-op MRI scan, they turned off the device and all the shaking returned within about 30 seconds – and it was remarkable how bad it had become.
CG: At that post-op, Greg was complaining, “This is horrible! This sucks!” And I said, “Greg, this is how you were every day before the surgery!” It was a surreal moment when you realise just how far you’ve come since the surgery. Since they turned it on, he’s never turned it off!
So can you can control the neurostimulator, and turn it on and off?
CG: Yes, we have a small wireless remote control that is smaller than a pack of cigarettes. Greg doesn’t mess with it, he leaves it to me! It allows us to adjust the voltage, according to parameters set by the neurologist, and turn it on and off.
Post-surgery how did your life improve?
GG: My medication has dropped dramatically, which means the severe dyskinesia has gone. I went from 1,650mg to 600mg of Sinemet a day. I was taking meds every two hours, from 6am to 10pm. Now I’m down to three times a day, that’s it! I can walk without a cane now, as my balance issues were caused by the dyskinesia, not Parkinson’s. I’ve put on weight, because before my body was constantly in tremor mode, which would cause my body to overheat and sweat – I actually get cold now, something that never happened before! It hasn’t fixed my fatigue, but I can live with that.
Have you experienced any side effects? And how often do you have to go for check ups?
GG: The tremors will go away with the meds and the DBS, but sometimes my body gets used to the regime and the tremors reappear, so that’s when we fine-tune and tweak the system to get rid of that about once a month. After three years I’ll have to change the battery – and the battery life varies depending on how high the voltage is for each patient.
CG: During those check up sessions, while the neurologists are adjusting the system, Greg will be in the middle of a sentence and then suddenly his tongue is glued to the roof of his mouth, which can be quite amusing!
GG: The only other problem I’ve experienced, isn’t even a side effect, but with law enforcement, and going through metal detectors. This one security guard started tugging on the device in my chest! I was like, “Dude, that’s below the skin. You can’t pull it out!” He had no clue. Every time we go through security we’ve had some kind of issue, even though I have a card that explains my condition.
Besides over-enthusiastic security, do people notice the signs of the device?
CG: The surgeons did a very nice job, leaving only faint scars. It’s very well disguised. You can see one of the wires go down the side of his neck but it just looks like a vein. The device in his chest protrudes a little, but it’s hardly noticeable to someone who doesn’t know it’s there.
And how long did it take you to get used to having a device in your chest?
GG: For the first two weeks it moved around a bit and it’s not that comfortable to sleep on your left side. But the scar tissue locks it in, eventually. And you get used to it.
What are the activities you can do now that you couldn’t before?
GG: We live in a poor area of Ohio and we’ve been running a food pantry here for four years, feeding around 350 under-privileged families. Part of our routine is supplying backpacks of food for the kids at the weekend. But we were getting to the point where we nearly had to shut it down. As my Parkinson’s got worse, it became harder to fulfil my role in the pantry. You have to understand, my whole body was shaking, I couldn’t even feed myself with a fork – let alone the other families.
CG: We have a local indoor waterpark here that we take our kids to right before Christmas every year. We used to have to find the end of the ride we wanted to go on, leave the cane there for Greg, and then I’d become his cane to go all the way back up the stairs to the beginning of the ride. So family trips to the waterpark have definitely become easier now!
You served in the navy for 20 years, and now you serve your local community with the pantry. How has the surgery helped you resume your role again?
GG: The surgery gave me back my mobility again, which was something I had lost almost completely. It got so bad I could barely move with the pain in my body, and the muscles in my legs were constantly knotted up. The surgery isn’t going to stop the disease, but it’s restored some of what I lost. It’s done wonders for me, it really has. And it’s nice to give back to the community again.
Would you recommend the procedure to others? Was it what you expected?
GG: I definitely would recommend it; it’s improved my quality of life dramatically. There’s no cure for Parkinson’s, but if you can improve your quality of life, it’s worth it. We were trying to be very reasonable with our expectations, keeping them low just because I didn’t want to be disappointed. At the end of the day, my results are way beyond my expectations.
What advice do you have for people considering deep brain stimulation?
GG: Weigh up your options. I would say definitely go forward with it. A lot of people are concerned about pain, but you are unconscious for the drilling into your brain. And then when the doctors are testing the electrodes, you’re awake as you have to be able to talk to them while it’s going on.
What’s the best thing about your life now? Do you have any regrets?
GG: No regrets. Maybe not doing the surgery sooner, but there’s a right time for everything in your life. For me, it was the best option. The best part about it is I get to dance with my wife now!
CG: He’s wanted to ‘dip’ me since the day we got together. And I would never let him because, as a guy with balance issues and the shakes, it was a disaster waiting to happen. But, now after DBS, he was finally able to do it and we captured the moment on camera – that picture that was years in the making.
Research reveals the monetary cost of Parkinson’s for UK familiesREAD MORE
This recipe offers a spicy yet cooling alternative to your standard saladREAD MORE
Can tiny mesh electronics revolutionise Parkinson’s treatments?READ MORE