[Apparelyzed]

A story about a woman who becomes paralysed following a car crash in the UK. Screens 11th September 2005 on ITV Sunday night drama starring Caroline Quentin.

This is a two-layered story. On one level it is an extraordinary story of British scientific achievement. It is also Julie's and her family's story of immense personal courage and humour culminating in medical history. After a car crash in April 1990, Julie Hill broke her back, paralysing her from the waist down.

She volunteered to become the world's first paraplegic to have a revolutionary electronic device implanted into her spine and attached to the nerves in her leg muscles. Thirty years of pioneering research by an eccentric professor at Cambridge and his team of bio-medical engineers, nursing staff and electronics experts have resulted in Julie being able to stand, step and even go cycling with her children.

Having overcome pain, frustration and emotional anguish to make medical history, Julie Hill recounts the tale of how she stood on her own two feet once more, and fulfilled her simple dream of once again creating footprints in the snow.

So, once it's been screened, let's hope it gives some of the facts about spinal cord injuries, gets it's facts right, and doesn't gloss over living with paralysis giving the impression we all have electrodes in our spine.

Simon.

Additional Information


'I think we are stronger now'
(Filed: 08/09/2005)

Julie Hill was determined to walk again after a car crash left her paralysed, discovers Bryony Gordon

One April night in 1990, Julie Hill, a 28-year-old sales representative and mother of two young boys, was returning home from work in Chichester. As she attempted to overtake two cars, one of the front tyres on her car burst, and she lost control.
 
If the accident had happened 10 feet earlier, she would probably only have suffered whiplash; 10 feet further on, and she would have hit a tree and probably died.

As it was, her car hit a natural hump in the grass verge - the only one for several hundred yards - launching the vehicle, and Julie, into the air, before they landed in a field. The accident severed her spinal cord, and damaged the nerves irreparably. In an instant, Julie was paralysed below the waist, and later told it was unlikely she would ever walk again.

Fifteen years on, and Julie's memories of that evening are as detailed as ever: the make of the cars she tried to overtake, the Chris De Burgh song still playing as the car spun out of control - all of which are captured in her book, Footprints in the Snow.

But when Julie watched a new ITV dramatisation of her book, starring Caroline Quentin as herself and Kevin Whately as her husband, it affected her more than she anticipated.

"It was bizarre," she says. "It was strange to see someone play your life, and the lives of your family. It was like stepping back from it for the first time, and it was very emotional. The children said, 'we'll be fine watching it because we know the ending', but they were really quite choked."

The drama tells the story of how Julie, now 43, and Kevin came to terms with her paralysis. Before the accident, their marriage of 10 years had already become distant; afterwards, it seemed to be falling apart. Kevin became suicidal.

"When I met Caroline," says Julie, "I asked her, 'are you bored with being me yet?' and she said 'yeah, I am actually' and I didn't blame her."

But Julie's story is even more complex than the TV drama. Two years after her accident, she volunteered for a project funded by the Medical Research Council that would allow her to become the first paraplegic to have an electronic implant placed in her spine in the hope of restoring leg function.

Nick Donaldson and Tim Perkins, the biomedical engineers from University College London behind the Lumbar Anterior Root Stimulator Implant (LARSI), hoped that the implant, remotely controlled by a small external box, would then stimulate the leg muscles into action by passing an electrical current through them. The aim was that it would enable Julie to stand, and in time perhaps even take a few steps.

It was an incredibly long and arduous journey that took almost five years, but amazingly, in 1997, Julie stood for the first time since the crash, and also took 23 slow, painful steps. Julie describes the feeling of standing up, having been confined to a wheelchair for so long, as "amazing, because nobody knew if it was going to work".

"Trying to mimic what the body does with half a dozen electrodes is pretty tough," she says. "The practical idea would be that I could do something while standing up - such as have a cup of tea - but you can't do that when you have to use both hands for balance.
At the time of the accident: Hill's children were to young 'to realise the enormity of it'

"Goodness knows how long it took me and I was walking like Max Wall, so it wasn't attractive. I did feel elation and a sense of achievement, but when I sat down, the sweat was pouring off me." But any hopes that the procedure would help her to overcome her disability permanently were short lived. The medical team was unable to position her hips in the correct alignment to allow her to balance properly, which made standing too uncomfortable and impractical.

But Julie was not to be beaten. One day, as she watched Kevin and her sons set off for a bike ride, she had an idea. "Perhaps," she thought, "the system could be used for cycling instead?" The seat of a bike would support her upper body, thus leaving her legs free to act independently.

Julie put this idea to the team at UCL, who set about building a program - and a trike - for cycling. It worked, and she was soon able to join her family on bike rides, and gain invaluable aerobic exercise. The device will stay implanted in her body for the rest of her days, and, she laughs: "It will still work when I'm dead, so I can kick my way out of the coffin."

Donaldson and Perkins's research has led them to attempt to develop a new implant for paraplegics that, in one device, would control the bladder, bowel and the ability to cycle. Unfortunately, the MRC stopped funding the pair in 2001, and, since then, they have found further financial support hard to come by. Julie calls this "a travesty", considering that their new device could benefit up to a quarter of people with spinal-cord injuries.

On television, Quentin portrays Julie as a strong woman, who overcomes the shock of discovering that she will probably never walk again with her dark sense of humour - jokes about the difficulties of having sex when you are paralysed, and drinking lager with a catheter abound. And, by the end of the programme - as the family cycles off into the sunset - her disability is barely an issue. A tidy, happy ending for the television bosses, perhaps, but is it faithful to life?

"It wasn't plain sailing, especially on the personal relationship side," says Julie. "Kevin and I were drifting apart before the accident, so it wasn't easy. But you can get through these things. Eventually, for us, it was being able to talk and, for Kev, to see past the disability. It took many years to get back on an even keel again, but I think we are a stronger couple because of it."

She believes that her sons, who are now 22 and 20, are better people, too. "If there can ever be a right age for this kind of thing to happen, I think they were at it. They weren't too young, but they weren't quite old enough to realise the enormity of it. So they grew up living with a disability and they are brilliant people for it. They have a lot of empathy."

Julie says that the turning point for her, personally, was becoming involved with The Back-Up Trust, a charity that arranges for paralysed people to enjoy outdoor activities, a year after her accident. Through them, she has been water-skiing, skiing and abseiling; activities that, ironically, she had never tried before the crash.

"It allowed me to focus on what I could do as opposed to what I couldn't do. We now see the accident as a hiccup. The disability doesn't get in the way of what we want to do."

To prove the point, the couple have just returned from a three-month world tour, to celebrate their 25th wedding anniversary, that took in Africa, Australia, New Zealand and the west and east coasts of America. Julie canoed down the Zambezi and snorkelled on the Great Barrier Reef.

[Bob Clark]

They tried something like that over here in the States (North Carolina?) too. The last I heard it turned out to be somewhat of a failure and the two guys who were the first "guniea pigs" were havings lots of problems with all the wires they had implanted under their skin.

I don't recall it being wired up to their spine or spinal cord though.... just to a small (for the time) computer "brain".

I can't find an article on it right now. I'll search later...

[Apparelyzed]

Well,

I enjoyed it, plenty of dark humour, right up my street!

It brought back quite a few memories for me, such as my legs feeling as though they were in the sitting position for about 3 weeks after my accident, even though they were straight. And how wobbly I felt when I first got into my wheelchair, it took about two months before I took the sides off!

The FES was interesting, I wonder if they could do something similar to exercise my abdominal muscles, I'd be the first in line. One of the biggest complaints I hear, is not "I wish I could walk again", but " how the hell can I get rid of this damn pot belly"!

Plus, did any of you notice anything familiar lurking in the background?

Simon

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[wheelie182]

yeh i thought it was great, specialy the detail that caroline went into with the physical acting, the way that when she lifted up her leg and droped it, it looked so real, and the way that she struggled to sit her self up in bed,

she probaly did a load of research, good for her,

and simon, how did you spot that, you must have a good eye,

[Apparelyzed]

Good eyes, good hearing, I guess being in a wheelchair has sharpened my senses somewhat!

It was also good to see plenty of legbags flying around, and bowel care being highlighted in the drama. Bowel and bladder function is something many people wonder about, but never ask about.

Regards

Simon

[keps]

I thought that the programme was good, but I don't think it went into enough detail about personal care.

As far as I could tell -

"Manual evacuation" - one mention
"catheter" - one mention
"leg bag" - one mention

There were no explanations either, so while I'm sure most people would know what a catheter was, I don't think the other two are so easy to decipher. I know that before I was injured, I would've been thinking "manual evacuation - leg bag - eh???"

I personally found the way "Julie" handled her legs unrealistic. She seemed to lift them as if they were as light as feathers!

Also, the was absolutely no mention of skincare. If you didn't know anything about SCI when you watched this programme, you would still have no idea about pressure relief.

Oh, and Kevin's moustache was just outrageous!

[Apparelyzed]

I must admit, I was half expecting one of them to end up with a pressure sore after getting drunk.

Falling out of bed, and falling asleep in your wheelchair usually have consequences to them, no matter how minor.

I knew of someone who fell asleep drunk in their chair, and it took 3 months of bedrest for the sore to heal.

But then again, it was a drama, not an educational video after all, and as long as it is factually correct, entertaining and enriches the viewer to give them a better understanding of life in a wheelchair, it must be a good thing.

Simon.

[wheelie182]

i see what you mean keps, when people see somone paralyzed in a chair, all they seem to think is that they cant walk, people dont think about other things such as bladder and bowel, they just think that its only your legs that dont work,

would of been cool to see her try and act, getting onto the water ski,

[Joed]

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they just think that its only your legs that dont work

I've also found that to be what many people think. Having one leg paralyzed and the other neuro-deficit, someone once asked me why I couldn't simply hop around on one leg. (!?) ...never thinking that torso muscles are also affected, which impacts balance...not to mention the question of what to do with my dangling, paralyzed leg while I'm doing all this hopping around. I guess I could strap it to my shoulder or something. (?)

I've found that people are also surprised to learn that there is sometimes pain involved with being paralyzed. My leg doesn't hurt, but other body parts sure do!!

I'm sorry to have missed this movie. Is this only being shown in the UK? I'll keep my eyes open for it.

[RehabRhino]

I actually thought it was a pretty good. There were plenty of things which rang very true and I thought the general atmosphere of the rehab being a friendly and safe haven for her came across very well.

While I agree with keps that certain things might have gone over the heads of nonparalysed people, it was a drama and not a documentary. If you go on the footprints in the snow website it actually says that the movement shown in the programme as a result of the implants was exaggerated for the TV.

Spinal injury is so different for everyone that it would have been hard to get across many things such as complete and incomplete without confusing or clogging up the storyline. For example, she was complete and couldn't feel anything, I have since had to explain to people who know me well that this is very different from my own near normal sensation, even though I don't have any function.

[Bob Clark]

Apparelyzed, on Sep 12 2005, 07:01 PM, said:

I must admit, I was half expecting one of them to end up with a pressure sore after getting drunk.

Falling out of bed, and falling asleep in your wheelchair usually have consequences to them, no matter how minor.

I knew of someone who fell asleep drunk in their chair, and it took 3 months of bedrest for the sore to heal.

Simon.

Reading your post reminded me of a fellow I met at the SCIC. I wrote this some time ago.

Quick story from my days in rehab.

"Back in '79 when I was in a SCI rehab for my accident a young paralyzed guy came in who really needed help. He fell asleep drunk in his old van (the ones with the engine between the front seats) with his butt up against the engine cover. He left the van running and it must have overheated and since he had no sensation he cooked one of his buttocks. He said that he woke up to the smell of burning cloth and flesh.

They had to cut out all the bad skin and muscle and replace it with a large skin and muscle graft which had an arterial blood vessel still connected to it. I guess this is what's referred to as "flap surgery". I think they took the graft from his back. He was in a special bed on his chest with an oxygen tent over his butt for months. He could barely move, even as he lay on his chest for fear of dislodging the graft. I'm just guessing now because it was over 24 years ago and I haven't seen or heard from him but his butt probably hasn't been the same since. And he'll probably always have problems in that area. It's easy enough to get pressure sores on healthy skin...I can only imagine how much more care and attention is needed after a severe burn, skin and muscle graft or pressure sore has healed."

[Apparelyzed]

Here's a news video article on Julie Hill, you will need RealPlayer to watch it though.

http://news.bbc.co.uk/olmedia/225000/video...x_news24_vi.ram

Regards

Simon

Bob: All I can say, is OUCH!

[Joed]

Yeah, OUCH! What a terrible experience...I wonder how he's doing now?

I'm still nursing a burn injury from almost three months ago that I didn't know I was getting at the time. Although not nearly as serious as Bob's 'butt guy', I was quite concerned at one point.

While staying with my sister who was in hospital, I had tried to sleep on one of those recliners while having my Zippo lighter in my front pocket...a place I normally wouldn't keep it. Anyway, the fluid leaked and burned a perfect rectangle on my upper thigh. I didn't notice it until the next day, and then spent the next day trying to figure out what the heck caused it. When the blisters started to appear, I finally put two and two together.

Gives a whole new meaning to 'hot pants'.

[Bob Clark]

Hi Joed,


A "Zippo" lighter!? Hey girl, it's the 21st century....get with it. I only use Bic lighters now but once in awhile I'll get stuck with one of those cheap Chinese knock-offs. They can be dangerous too.

In my teen years all the "cool" guys and girls who smoked used Zippo lighters. Can you put it between your thumb and two fingers, squeeze it fast so it pops open. Then snap your fingers to roll the wheel, spark the flint and make it light? You knew you were one of the cool dudes (or dudesses) once you mastered that slick move!

I remember always trying to keep it filled (so at times went overboard) and more times than I want to think about got chemical burns from the lighter fluid on my thigh. I healed fast back then....

Live and learn.

[Joed]

Bob...

I'd use a Bic too, but my husband collects Zippos (has about 500), so it's considered blasphemy around here to use a Bic. What's funny is, in spite of having a whole room dedicated to these lighters, there are times when between the both of us we don't have a light.

We attend the International Zippo Swap Meet in Bradford, PA every other year. One lighter....ONE, mind you....sold for $15,000 at auction. They're all nuts....every last one of 'em.

But, you have to admit, there's just something special about that 'click'. Bics don't click.

BTW...I've been trying to search for this movie and can't find any showings here for it. I can buy it though. I hope they end up showing it, so I can save fifty bucks.

[Bob Clark]

Hi Joed,

That's funny you mention the International Zippo Swap Meet in Bradford, PA. I don't know if it's related or not but when I used to hunt and fish in upstate PA we'd pass by a Zippo factory. It was on the east side of the North-East Extention of the PA Turnpike. I don't know what town it was near though..... perhaps Bradford.

I wonder if the swap meet is located near the factory?

Just a short way off on the opposite side of the road was a Budweiser brewery. I heard that you could stop off there and get a free beer but we were always in such a rush to get where we were going we never did. Besides, if I remember correctly, we always had a cooler full in the backseat anyway. That was before MADD of course.

Zippo Zippos everywhere and not a light to be had. A take-off on the old saltwater saying.

Can your hubby do the "between the thumb and two fingers, squeeze it fast so it pops open. Then snap his fingers to roll the wheel, spark the flint and make it light"?

[Joed]

Quote

Can your hubby do the "between the thumb and two fingers, squeeze it fast so it pops open. Then snap his fingers to roll the wheel, spark the flint and make it light"?

Yeah, but I'm better at it.