DBS transcript

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Martha Siede: I can't pour a drink, I can't cook a meal, I can't feed myself all the time. I can't tie my shoelaces or my buttons, I need help putting make-up on, I can't wash my hair. Yeah, a lot of day-to-day things that I need help with all the time.

DR JOHN DARCY: After being diagnosed with cerebral palsy as a baby Martha Siede struggled being trapped in a body that wasn't her own. She is now 36 years old. What's life like in a wheelchair?

Martha Siede: Um, hard. I always need someone with me, I need help all the time, I can never go, say, for a day away or something on my own. I think that, for me, I'd like to be able to do that.

Doctor: Can you stand on your own?

Martha Siede No, I can't.

DR JOHN DARCY: You can't. This is why Martha feels so trapped. She has no control over her body. There is no cure for cerebral palsy sufferers like Martha but at last, there is hope. It's a radical treatment called deep brain stimulation. Tonight, we follow Martha's progress. With the deep brain stimulation, what do you hope for?

Martha Siede I hope that my twitches will subside and I can see that my world would totally open up.

DR JOHN DARCY: When did you first become aware that you were different?

Martha Siede: I started special school in fifth grade and I just had friends that would dance around and I'd try and keep up with them, just pushing myself flat out to just be next to them at the time. And that really hurt my feelings.

Martha Siede: Mentally, I could keep up with everyone but physically,
I knew I was very different.

DR JOHN DARCY: When you sit in your wheelchair, you sit on your limbs.

Martha Siede: Yes.

DR JOHN DARCY: Why do you do that?

Martha Siede: Because if they're down normally, they will just twitch, swing out and I can't stop them. There are times when I just choose to stay home because it's a comfortable environment and I don't have to face anyone. I can just let my body do what it wants.

Professor Martin Krause: Martha is very bright young woman. She's smarter than 80 percent of the population. Smarter than me, probably, and that makes it a really sad condition because she realises she has so many mental powers which she could use but her body locks her in and it's a lot of suffering because it starts in childhood and they have to live all their life with this condition.

DR JOHN DARCY: Professor Martin Krause is directing a world-first clinical trial on cerebral palsy sufferers here at Sydney's Westmead Hospital.

Professor Martin Krause: Try not to resist any of your involuntary movements.Let them do what they want to do.

DR JOHN DARCY: But first they need to measure the severity of Martha's cerebral palsy.

Man: Bring your hands up like that from the side and keep it there.

DR JOHN DARCY: The simplest things are incredibly hard.

Man: Pour that cup of water into the other cup, the empty cup.

DR JOHN DARCY: Like picking up a cup.

Martha Siede: It's frustrating. It's like you can be really smart but dumb physically.

Man: This time, touch your nose.....and touch my finger here.

Martha Siede: That's my favourite one.

DR JOHN DARCY: But what may help improve Martha's motor skills is deep brain stimulation. In the operation, a pacemaker will be inserted into her chest. Attached are two wires which distribute electrical charges to a highly defined place in her brain. The theory is those charges will short-circuit the abnormal impulses which cause her spasms.

Professor Martin Krause: We hope, if we can block this over-activity, this wrong signalling in the brain, by deep brain stimulation, we hope that we can suppress these involuntary movements and improve, therefore, voluntary movements.

Martha Siede: They're simple things and I can't do 'em. But that's why I am doing this operation.

DR JOHN DARCY: Martha will be one of the first people with cerebral palsy to trial deep brain stimulation. But it's already been proven to work
on people with other severe movement disorders.

Luke Wilmot: Monday, Tuesday, Wednesday, Thursday, Friday, Saturday, Sunday.

DR JOHN DARCY: Luke Wilmot was five years old when he was diagnosed with dystonia — a rare muscle disorder.

Luke Wilmot: When I went to get my first wheelchair, I threw the biggest tantrum. I'd seen other people in wheelchairs before and I never wanted that to be me. It was definitely one of the worst days of my life.

DR JOHN DARCY: Like Martha, Luke had little control over his body,
which was in constant motion.

Luke Wilmot: I don't think you can ever just get over being stuck in a wheelchair and not being able to have a career or drive a car.

DR JOHN DARCY: Then Luke underwent deep brain stimulation. And soon after the operation, he went from this.....to this.

Luke Wilmot: It's pretty emotional. My family hadn't seen me walking
straight and not falling over for about 10 or 12 years. Was a completely different Luke.

DR JOHN DARCY: Luke was soon outside kicking a footy, moving the lawn and riding his bike. Where would you be without the treatment?

Luke Wilmot: I'm not sure if I'd be here. I did think about overdosing
on my tablets one day and just going...giving up. It's a pretty hard thing to say.

DR JOHN DARCY: Deep brain stimulation has allowed Luke's life to start again. Five years on, he has his driver's licence.

Luke Wilmot: Independence is...incredible. Driving a car, probably the biggest independence you could ever, ever feel.

DR JOHN DARCY: Are you happy?

Luke Wilmot: I'm pretty sure I'm more than happy. It's a feeling that I just can't describe to anybody 'cause things get better and better and it's more than happy.

Martha Siede: Do it. Just do it.

DR JOHN DARCY: And now it's Martha's turn. It's breaking my heart.
By her side, her husband, Andrew.

DR JOHN DARCY: He's helping prepare her for the brain surgery — not an easy job on a person with uncontrollable twitches.

Esther: "Dear Esther, I've always been so, so lucky to have you as my sister."

DR JOHN DARCY: Martha's written goodbye letters to her loved ones.

"Thanks for being my niece, lots of love, Aunty Martha."

Martha Siede: It's a big day coming up but, um, God's in control and it's going to be OK. And if I get to walk, watch out, everyone, 'cause I'm running after you.

WOMAN: Here's trouble.

DR JOHN DARCY: So Martha, today's the day.

Martha Siede: Yes, it is.

DR JOHN DARCY: A brain scan pinpoints the exact area that needs to be stimulated. The electrodes are just a millimetre thick and there's no room for error. It's a little bit like looking for a planet in space.
Slightly bigger than a matchbox ..the 'brain pacemaker' is inserted into Martha's chest.

Doctor: That's it. So, we'll have to wait and see what happens now.

DR JOHN DARCY: Is the DBS procedure a cure?

Professor Martin Krause: We can achieve, in some patients, a really great improvement. In others, we achieve no improvement. And so far, we can't really predict who will benefit and who will not benefit.

Martha Siede: Remember, before the operation Martha told us...
I can't pour a drink,
I can't cook a meal,
I can't feed myself all the time.

DR JOHN DARCY: A month after the surgery, she's able to make a sandwich.

Martha Siede: Dr John, I have something for you.

DR JOHN DARCY: Ah, what you got?

Martha Siede: I made you a sandwich.

DR JOHN DARCY: Oh, you beauty.

Martha Siede: Enjoy.

DR JOHN DARCY: Look at that. Fantastic. A big event.

Martha Siede: Yep.

DR JOHN DARCY: It's important to note that any small improvement is significant for Martha. This was before the operation. Three months later...

Martha Siede: That's really good. I've been happy with the progress. I still have my big twitches, but that's OK. They're not as often as they used to be.

DR JOHN DARCY: ..and nine months later.....her first steps to independence. Remember, this was Martha's life before.

Martha Siede: My twitches have subsided a lot. I probably have about 5%
to what I normally had. So that's a big success. I can drink from a cup, I can write, I can dress myself a lot more easier.

DR JOHN DARCY: So Martha, if you think back to the DBS those months ago, good idea or a bad idea?

Martha Siede: It was a really, really good idea. I don't regret it for one second.

Martha Siede: That's not bad. Wow.

WOMAN: Could have been cognac, you didn't spill a drop.

Martha Siede: It was good. Thank you. Awesome.

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