FERGUS HENDERSON, CHEF
IN OCTOBER 2005, PROFESSOR MARWAN HARIZ PERFORMED DEEP BRAIN STIMULATION SURGERY ON FERGUS HENDERSON TO TREAT THE SYMPTOMS OF HIS PARKINSON'S DISEASE
I thought I had a trapped nerve because I was walking around with an arm like John Wayne on horseback, so I went to the doctor and he told me it was Parkinson's. That wasn't a particularly good moment. I was showing classic symptoms – I'd had the John Wayne arm for about a year but I'd sort of carried on regardless. I went for a rather good lunch after I was diagnosed.
I had to go back to the National Hospital for Neurology and Neurosurgery in London for tests after a few days, which was quite odd because I still felt fine, and there I was with my pyjamas in hospital. There was no mention of an operation. I was prescribed drugs, but I had quite a bad reaction to them – my movements were becoming more extreme, so my doctor suggested deep brain stimulation.
I was moved to the new unit, where Professor Hariz works. I had to see a neuropsychologist to assess my general attitude, because if you're gloomy the surgery can exacerbate that. Luckily, on the whole I'm chirpy – even when I was doing crazy windmill arm I never let it get me down. I took the drugs for a year, which gave me time to think; by the time of the operation my limbs were misbehaving terribly, so I was quite ready for it. I was virtually bounding in.
When Professor Hariz described the surgery he didn't say anything frightening. He showed me all the gubbins, the battery and wires and plugs that go into the skull, and I was disappointed they were plastic – I'd imagined them to be gleaming and Terminator-like! He was a master of not raising expectations too high, because they don't know how well the operation will work. Fortunately, in my case it worked unbelievably well, but he didn't promise a miracle cure. He's a very steadying chap.
On the day of the surgery the first thing they do is screw a Darth Vader-type frame to your skull so you can't move your head. That was a strangely comforting moment, because you just think: "Well, here we go." I felt relieved to give in. The experience of being in theatre is hazy, even though I was awake, but I particularly remember the noises: when they drilled the holes and scraped the skull, and I'm convinced I heard whale music. One phrase stands out, too: "You may feel some tugging – we're going to go through the membrane of the brain." Other than that, calmness is the overriding memory. There was no sense of "I have to do this extraordinary thing" – he was very comforting. I feel quite responsible when I cook someone lunch; they're performing surgery on someone's brain, and they do it so calmly.
Since the surgery I've tried to do as much for the unit as I can. We did an art auction at the restaurant and had a party, and a little while later they had a celebration to mark the fourth anniversary of the unit, so we all squeezed in and shared a glass of wine. If there's something else I can do I'll happily do it for them.
I have health insurance through work, but they wouldn't touch me with Parkinson's – you pay all this money and they turn you away. The NHS provided me with knights in shining armour who saved me. The doctors I encountered have all been angels. They're an inspiration to me. Professor Hariz is at the heart of that – he's the brain man and a lovely chap. And he's eaten at my restaurant, which is a good sign: it's reassuring that he liked a good supper.
PROFESSOR MARWAN HARIZ, NEUROSURGEON
Deep brain stimulation (DBS) is usually performed under local anaesthesia. A tiny electrode is put in a specific area of the brain to control involuntary movement. In Parkinson's disease, areas in the brain are not working properly because neurotransmitters are lacking. How the surgery works nobody knows exactly, but by directing a current around the tip of the electrode you can block the pathological signal of the nerves that causes the symptoms.
I started performing this kind of surgery in Sweden in 1993, when it was just beginning; now it's routine. I was fortunate to train with one of the pioneers – surgery used to involve heating up and burning an area of the brain to silence it; today we use stimulation rather than destruction.
When Fergus was referred for surgery the team met with him to evaluate the symptoms, do an MRI scan of the brain to check there were no contraindications for surgery, and go through the procedure with him and his wife. We provide all the information about the risks and the expectations, then the decision is not ours and it's not his – we decide together.
The risks are bleeding in the brain, paralysis, infection, affection of mood (up or down), epileptic fits or a lack of effect. I'm not formally trained in delivering this kind of information. I have observed colleagues, talked with many patients; I have a first cousin who has Parkinson's disease and I have been a patient myself, although not for the brain, so I can see it from the other side. This kind of training is better than sitting in a classroom… it's life experience, commonsense empathy, and professional knowledge.
My first impressions of Fergus were that he was a happy man who didn't let the disease control him. We discussed where I'm from – Lebanon – because he had been there and was thinking of opening a restaurant in Beirut.
During surgery we discuss whatever: politics, weather, anything – the best way of monitoring the brain is talking to it. I have standard questions and tests: what day it is, counting backwards, giving the months of the year in reverse. I sometimes ask: "What is the colour of the white horse of Napoleon?" The brain makes a very distinctive sound when you insert the electrode – I call it the music of the brain [this is what Fergus referred to when he mentioned hearing whale song]. You don't see the area of the brain you are stimulating because it is deep in the brain, so you have to navigate with the aid of a coordinate system and you have to listen to the resistance of the different areas of the brain – grey matter, white matter, and cerebral spinal fluid.
With this kind of surgery you know the patient and meet the relatives; it's not like an appendix that can be removed, and that's that – there are follow-ups, so we build a relationship, but I won't call it a friendship, although it's certainly not unfriendly. I wouldn't go to Fergus to discuss my family problems – this is what you can do with a friend.
I've seen Fergus here a few times since his surgery, but the last time we met was in his restaurant a year ago, although since then I saw him all over a Scandinavian Airlines magazine, so I sent it to him! The first time I visited his restaurant I didn't tell him: I went with my wife and we hid in a corner. Fergus hosted an event in 2007 – he was very generous: the money went to our unit. He also celebrated our fourth anniversary here, with us – and some champagne.
DBS is different from a trauma – a patient coming in unconscious, having been hit by a bus; the expectation there is to remove the bleeding in the brain and save the life of the patient. In this operation it's not life or death, it's quality of life. Interviews by Laura Potter
For information, go to www.parkinsonsappeal.com
EMMA THOMPSON, ACTOR
EMMA THOMPSON SUFFERED BACK PROBLEMS FOR YEARS, UNTIL SHE MET GARRY TRAINER. NOW HER WHOLE FAMILY USES HIS "NEEDLES AND GOOD CHEER" – SHE EVEN INSTALLED HIM IN HER TRAILER ON THE SET OF NANNY MCPHEE
I started to get a bad back in 1984, when I was in the musical Me and My Girl. I had to do a pratfall every night for 15 months and twice a day on Wednesdays and Saturdays, and I used to really fling myself into it – actors will do anything for a laugh, including injuring themselves quite badly. Ever since, I've had a very bad back, which occasionally incapacitates me. I tried other therapists and had other treatments – once a doctor strapped me down so I couldn't move at all, which was a disaster; a doctor in South America gave me a huge injection in my back, which was no fun – but it was an instant thing with Garry. I remember opening my front door to him – I think I was on my hands and knees – and there was this gorgeous surfer bloke. I was thrilled and I wasn't scared of him.
The best thing about Garry is that he's incredibly cheery. Most alternative therapists are deeply judgmental about your lifestyle – "Oh, you drink alcohol. You eat bacon. Ah", that sort of thing – and they want you to live on leaves for six months to make your back better. Garry just does it with acupuncture needles and good cheer. He's also very realistic and never promises magic, nor is he unnecessarily pessimistic. I think GPs and consultants can use fantastically unhelpful language. I was once told my spine was crumbling, and if you're wandering round with a sore back and some twat tells you that, then you're not going to get better.
Garry's treated pretty much everyone in my family over the years, and now we have the same relationship with him that one used to have in the olden days with one's family doctor. You don't really get that any more, especially in a big city like London, but we do have that with Garry.
I've recommended him endlessly to friends. And on the set of the first Nanny McPhee film, which was a long shoot, I used to bring him in every few weeks and install him in my trailer. I'd direct all the crew members in to see him. It's tremendously pressurised making a movie, but afterwards they'd all skip out like spring lambs.
GARRY TRAINER, OSTEOPATH AND ACUPUNCTURIST
At the age of 17 I had a very bad accident playing rugby and was hospitalised for three months in a spinal unit. I was on very high dosages of anti-inflammatories, so I ended up getting a stomach ulcer, too. The specialists said I was lucky because I had sensation in my legs – but at 17, when I'd thought I had a sporting future and I'm lying there with a bad back and an ulcer, I felt the rug got pulled from underneath me. I was forced to look for other ways to relieve pain without medication, and acupuncture was the first thing that really attracted me. I trained as a nurse, so I like working with scientifically backed evidence – and there's solid evidence for acupuncture's efficacy. If you combine it with massage and osteopathy, you can treat a pain problem, whether it's caused by the skeletal, muscular or nervous system, and those are therapies I use.
I've treated a lot of actors, and they're a unique breed. Their motto is "the show must go on", and they really do want to get back to work. They also tend to have very open minds – Emma has become a great advocate of acupuncture, and that's because it's worked for her. I treat her on a semi-regular basis, and I'm called in when pain interrupts her ability to work. For her acute bouts, we combine osteopathy, acupuncture and deep-tissue massage.
With Emma, as with any patient, the best thing is to shut your mouth and prove what you can do. I like treating sceptics who don't believe acupuncture works, because you don't have to believe to feel better. I'm confident I can make a difference to most people, though I'm the first one to put my hand up and say if I don't think it's working. I also screen my patients very carefully – I use MRI scans, for example – because diagnosis is the most important thing.
The key is to be honest. Cure is a great word, but it's elusive. Sometimes you just have to manage a person from one episode of back pain to the next. You make a positive diagnosis, get them out of pain, and show them what they can do to help prevent it. Interviews by Alice Fisher
MAX STAFFORD-CLARK, ACTOR AND DIRECTOR
IN JULY 2006 THE ACTOR-DIRECTOR HAD NOT ONE BUT THREE STROKES. UNDER THE CARE OF DR RAI, MAX STAFFORD-CLARK HAS LEARNT TO WALK AGAIN AND IS BACK AT WORK IN THE THEATRE
On 12 July 2006 I'd returned from collecting an honorary degree at Warwick, and after an afternoon at my theatre company, Out of Joint, I'd walked home and fallen over at the front door. My girlfriend, Stella O'Feehily, phoned for an ambulance, which took 55 minutes to arrive. After admission to the Whittington Hospital I had a CT [brain] scan.
The first words spoken by Dr Rai, after he introduced himself at my bedside, were: "Do you know what's happened to you? You've had a stroke. In fact, three." I was lucky to be alive. I'd never been admitted to a hospital before, but my father had been head of psychiatry at Guy's, so I understood all about hospital hierarchy. Knowing Dr Rai was a senior consultant, I took great solace from his presence and the authority with which he explained: "This and this have happened, Max – we don't know what is going to happen next, but it could be this or this."
Nevertheless, despite my being unable to shit or walk, my mind wouldn't fully absorb what had happened for months. For instance, I was due to do a Platform talk at the National Theatre one day and I was convinced I could get up, walk out of the ward and get a cab there, but fell flat on my face. There was a school of thought – although Dr Rai wasn't part of it – that it was time for me to reach for the slippers and retire.
Dr Rai did his ward round twice a week, and it was and remains a comfort to see him and ask questions. He's a broad-shouldered man, metaphorically speaking. I've always found him to be an excellent doctor – telling the truth but never being gloomy; never discouraging, but instead saying what might happen if I attempt things I want to do. Aside from physiotherapy, I think reading and thinking and being allowed to work in hospital – and to have two glasses of wine in the evening – stimulated my rehabilitation.
Dr Rai never said: "You'll never walk again" – and my walking has slowly improved. When we discussed my left-sided aphasia, which reduced my vision and excludes me from driving, he did say: "Some things will never come back" – at a time when I needed to stop fretting about it. I don't think there's any disguise to Dr Rai.
I don't feel he, or anyone else there, was aware of my works when I arrived in hospital. David Hare, Alan Rickman, Danny Boyle, Jonathan Miller and Richard Wilson would visit and they didn't make any impression on the staff – although when the actor Cyril Nri came, I was excitedly told: "The doctor is here to see you", because he was appearing in Holby City.
I was discharged from the Whittington after five months and had appointments with Dr Rai every two months, although now it's only every six months. Dr Rai's not the sort of person who would ever say: "Don't do that", and I'm happy to have done three plays in the past year.
He calls me Max, but I still call him Dr Rai. He's got a file on me the size of a telephone book, but I've no idea what his first name is. I know he lives in Harrow and that he's married, but not much more than that. My guess about his age is as good as yours. I quite like the fact that he's a distant guru, as it were. He's both very positive but aware of limitations. I would say he's a humanist, if forced to put a word to him.
I will certainly ask him to Andersen's English, by Sebastian Barry, which I'm directing at the Hampstead Theatre from 8 April.
DR GURCHARAN RAI, STROKE PHYSICIAN
If the perception Max has of me is that I'm a humanist, that's fine. I'm a physician, a geriatrician, a stroke physician. My interest is in stroke medicine – particularly rehabilitation. In Max's case his strokes resulted from a condition causing his heart to be fast and slow, resulting in clot formations in the heart, which can reach the brain. A stroke can kill you – a third die within three months.
When I first met Max his speech was slurred, and he was muddled and confused. I said: "Are you aware your left hand is very weak?" and he said: "Oh, it's just weak – but not that weak." Within a week he was saying: "I've got a play arrangement to take care of." He wanted to rush a return to premorbid [pre-illness] workload, so that's one of the things I had to control. If someone is trying to jump ahead of their natural recovery, it can be difficult. But it's a good thing Max was determined to recover. Many stroke sufferers fall into depression – I think I would deteriorate in hospital. He'd work with Stella O'Feehily by his bed, and I do think using the intellect and being artistic helps the recovery.
Communicating with a patient's family, or someone who knows what they were capable of, can be crucial, and I've developed a good relationship with Stella, who Max has been physically reliant on. She became part of my "team". They both come for his appointments, and after we've talked about medical matters and his work, we talk generally – sometimes about the NHS. Stella is writing a play about it [which Max is expected to direct at the National].
I've been positive about Max directing plays and travelling. In the past six months, or year, I wouldn't say his left-hand function has improved at all, but what continues to improve is his mental outlook. To me he appears to be functioning at the same level in terms of workload as he ever was.
I wasn't able to see Max's plays when he asked me along. My life is my work. I'm 62 and I'm not looking forward to retirement, to be honest – because one thing I don't have is a hobby. I gave up stamps and I gave up sport. But some doctors in retirement take to art, and I'm considering that. Interviews by John Hind
RUBY WAX, COMEDIAN
RUBY WAX HAS SUFFERED DEPRESSION FOR ALMOST 40 YEARS. SHE BEGAN SEEING DR COLLINS IN 1997, WHEN HE DIAGNOSED HER CONDITION. HER TREATMENT CONTINUES, AND THE TWO HAVE BECOME CLOSE FRIENDS
The episodes started when I was 18 or thereabouts, and then recurred every five years or so. Nobody around me mentioned depression; people thought it was a physical ailment – glandular fever, maybe. It felt like being in hibernation: everything was dark. I didn't necessarily feel sad, just empty. Eventually, 12 years ago, I ended up seeing Mark. I think someone must have suggested to me that what I was suffering was mental. Anyway, I was pregnant with one of my kids and having an episode. He asked me some questions, I told him my symptoms, and he said: "What you're describing is clinical depression." I was very happy, overjoyed! I just thought: "Oh good – now we have a name, now we can do something."
He couldn't prescribe anything straightaway because I was pregnant. It was a huge relief when I got the drugs after the baby was born. Gradually I started feeling better – the treatment kicked in and then I felt, well, how you feel when you're normal. But then what happens is you get immune to the stuff – you override the effect, and then five or six years later you get ill again and need a new prescription.
When someone gives you something that works for you, you naturally bond with them, but Mark has a great personality as well. So we got on in a clinical sense, but once I returned to being a human being I met his wife, whom I fell in love with. We're very similar, so we got very connected.
Mark and I have one relationship when I'm well and another when I'm not. I see him socially for dinner; our families go on holiday together. We adore each other. It wasn't luck that led him to me, though – I always research really well. I make lists. When I used to interview celebrities I'd say: "Where did you get your face done?"
Mark is so smart. He really knows drugs; he knows chemicals. You know, for something like my condition you have a choice of about 2,000 drugs, and boy does he know what he's doing. The chance of getting that cocktail right… I pity the person who goes to their GP – they're guessing; better to find the real specialist. He's not a therapist – I have had therapy, and it's fine, but you know, if you're missing a leg it's no use jogging. Anyway, if he was a therapist we wouldn't be able to socialise – he'd be thrown out of the association. But it's like dating your gynaecologist. It's OK!
DR MARK COLLINS, CONSULTANT PSYCHIATRIST
I first saw Ruby around the time of the birth of her youngest daughter. When I initially see someone, I make a general assessment – establish whether or not I think they have anything wrong with them, whether they actually have a depressive illness or a "normal" life, but are unhappy with it. I try to get as much background as possible and then formulate a joint plan about the best way to proceed.
I'm there to advise on the psycho-pharmacology side of depression treatment. With psychiatry, more than other branches of medicine, you're dealing with the person, trying to connect with them. I think there has to be empathy, sympathy for people who are struggling in a mental sense.
Of course I liked Ruby when I met her. It's pretty difficult not to like her – she's highly intelligent, highly articulate. She presented with a severe form of depression where the light just gets switched off, so to speak. It is more than just a lowering of mood, more a descent into a wasteland of mood. Ruby could function in a robotic sort of way but was feeling absolutely nothing except bleakness and emptiness.
With this sort of clinical depression, inner-brain chatter will be a stream of negativity – about being hopeless, worthless, not perceiving a future, no matter what your actual reality is. Your sleep is affected, your appetite is affected. Your brain stops working properly – attention, memory, all the things you take for granted stop working properly and you feel that it's your fault, which is a pretty grim set of circumstances.
She'd had psychotherapy coming out of her eyeballs, and I think it was helpful to explain to her that whatever psychotherapy she'd had before, she was never going to get anywhere if the physical brain dysfunction – if I can put it that way – of the depression wasn't treated.
Initially I prescribed an antidepressant and suggested cognitive therapy with a colleague. More recently Ruby has started to take a mood stabiliser. Monitoring the medication is part of the job. Depression is a relapsing illness, and sometimes medication ceases to work where previously it had been working. I saw Ruby quite a few times last year, for example, when she was going through a bit of a bad patch.
I love my job, and although sometimes I fail to help someone, when one does manage to help, especially someone who is severely depressed, it is very, very rewarding. Light bulbs gradually coming on again and all that.
My relationship with Ruby evolved when, back in 1999, my wife became involved with the charity Depression Alliance and Ruby agreed to help by talking about her depression. She met my wife and built up a friendship with her. So now we have a friendship and a professional relationship. The thing is, you reveal more to your psychiatrist than you would to almost anyone else. Sometimes you tell them more than you would your partner. It's a relationship that inevitably involves a significant amount of intimacy and trust.
There's a need to feel that at some level Ruby and I have a connection, and that I understand how she is feeling. That in itself is more important than the technicalities of drug levels, etc. Of course, it's important to be able to do that side, but once you've got a connection with somebody, that in itself is very healing. Interviews by Ursula Kenny ★