JulianFellowes.jpgQ&A with Lord Julian Fellowes

The NTF and IETF asked Lord Julian Fellowes, Honorary President of the National Tremor Foundation, about his experience with tremor and how it has affected his life.

When did you first notice signs of a tremor and did anyone else notice them?
This is hard to answer.  I gradually began to be aware that my hands were no longer as steady as they had been several years ago, but for a long time I brushed it aside, thinking I was tired or I'd had too much to drink the previous evening, or any other excuse that would prevent my taking it seriously.  I would say I came to terms with the fact that I had an Essential Tremor about four or five years ago.  As for anyone else noticing, I'm sure they did notice but they were generally too polite to say anything.  

At what age was Essential Tremor diagnosed and what impact did it have on how you coped with it emotionally?
I would guess I was about sixty three when I went to a specialist and he gave me the news that I suffered from the condition and that there was very little - or nothing - that could be done about it.  He prescribed Propranolol and sometimes I take it, but mainly to convince myself I am doing something and being moderately pro-active. I cannot pretend it has much effect.  I think I coped reasonably well at the time, mainly because I had no other option.

What were your first thoughts on being diagnosed?
Well, of course no one likes to think they have an incurable condition.  It is another marker that one is moving through life and that, in my case, the end is a lot nearer than the beginning.  but then again, many people have to put up with far worse, involving great pain and suffering, so the fact that I spill my coffee and that my writing is no longer very attractive, does not seem so very serious to me, not in the greater scheme of things.  After all, almost everyone has something they have to put up with.  Why should I be spared?

Do, or have any of your family shown signs of the condition?
I think my dear father had something similar in his final years and I remember he used to get very impatient with his writing hand, almost admonishing it when he tried to scribble a note.  But he was luckier than I as it didn't seem to take hold much before his eightieth birthday.

What support did you get from the healthcare team and were you provided with patient information at diagnosis?
I very much liked my specialist who did not mince words.  He told me at once that it was incurable.  That for some people, drugs could give a measure of control, but that this didn't work for everyone, and that it would get worse not better, abeit slowly (we hope).  There was no lathering at all, and I prefer it that way.

Has tremor affected your career and if so how?
The tremor has really made me accept that my acting days are done.  For a long time I held on to the notion that I might return to acting, rather like Richard Attenborough did after a long stretch of directing, in my later years.  But a tremor would show on screen and so I'd guess this will never now come to pass.  Once or twice, when I was offered a part, I would explain about the condition to the director in the hope that he or she would invite me to play the part, anyway.  But this didn't happen, so again I think one has to accept things, move on, and not cry over spilt milk.

Do you tell others that you have tremor and how do your share your story? What type of feedback have you received?
I was once at a press lunch that was supposed to be governed by "Chatham House Rules" (meaning that nothing would be reported or printed about the guests) but one thoroughly unpleasant journalist kept staring at my hands and announced afterwards that she was writing the story.  Luckily, the host of the luncheon recognised that she had broken the terms we had been invited on, and he managed to stop it.  But it taught me that I could not hope to keep it hidden for much longer.  So, from then on, I would refer to it in interviews and if I were giving a speech I would explain why my hands might shake.  As in everything else, honesty is the best policy and I have never experienced any nastiness about it since.

Stress can very often make a tremor worst - How do you cope with stressful situations?
This is very true.  Stress and anger.  The more furious I am about something, the more my hands rattle and shake until I can hardly do up a button or lift a cup.  The lesson here is simply to avoid letting things upset you, if you can.  Easily said, I know, but it cannot be a bad thing to relax a little more as one gets older and prevent every tiny niggle from getting under one's skin.  I wouldn't say I can completely stop myself getting nervous or angry, but I think I am a little better than I used to be.

Imperial College is currently undergoing a study and research into MR guided focus ultrasound as a way of helping reduce tremor. DBS (Deep Brain Stimulation) operations have helped people in the past. Have you ever considered having an operation to help reduce your tremor?
I have discussed this possibility with my medical team and they do not yet think that either the surgery or my own condition has reached a stage where an operation would be advisable.  That said, I would never draw any kind of line in the sand about it.  Things change and I change with them.

How did you get started in the film/TV industry?
People tend to forget that I was a working actor for many years before I started writing and when you are a young actor, it is very important to get on to television or into a film at a fairly early stage, or you can get left behind.  So, I put all my efforts into finding camera work when I was first playing in the West End and so London-based for a while.  After a slightly over-zealous campaign, I managed to get cast as Cherie Lunghi's boyfiriend in a BBC version of Kean, starring Anthony Hopkins.  This was followed by a single scene with Mia Farrow in one of her films about haunted babies.  After that I got more and more work on television and films, until, in my forties, I was cast in various running parts, as well as bigger roles in films, including Place Vendome, which I was in with Catherine Deneuve, For the Greater Good, directed by Danny Boyle, Aristocrats, from the book by Stella Tillyard, the James Bond movie Tomorrow Never Dies, and of course Monarch of the Glen, in which I played poor old Kilwillie.

How have you adapted with the everyday challenges of living with tremor?
I do get impatient, I admit.  But of course, like everyone else I have developed my tricks.  I always drink with two hands on the glass or cup, I try to rest my hand on something solid when I am holding a paper or anything else in public.  But this is why I believe in telling the audience about the condition.  Once they know why your hand is shaking, they don't worry about it.

In Downton Abbey you wrote into the last episode the storyline of the butler who developed a tremor. Do you envisage any future projects having an opportunity to highlight the condition in a similar way?
I hope so.  I wanted the final episode to be generally happy for all the characters we had grown fond of over the years (or I had), but I didn't want it to be too saccharine sweet, so I gave Carson a tremor which was hard for him to deal with, but which would not ultimately ruin his life.  That is what I feel about the condition as a sufferer.

On information days, the majority of passers-by have never heard of Essential Tremor. A few even mention they have shaky hands themselves but are too scared to go to a doctor for fear of being told it is Parkinson’s. When they hear the possibility of their shakes being another disorder, they seem quite relieved and keen to know more about ET. - If you could give any advice to people living with essential tremor who feel like they need to hide it, what would it be?
Please don't feel you have to hide it.  Talk about it.  Say how irritating it is, how it drives you nuts, but don't bottle it up.  I do not believe that is ever a very satisfactory way of dealing with any trouble, great or small.  The truth is, we need more people to be aware of the condition, more people to demand treatment, we need more research and more expenditure on research.  None of this is going to be achieved by men and women feeling they have to keep it secret.  Them's my sentiments.

In 2010 the International Essential Tremor Foundation officially registered March as National Essential Tremor Awareness Month (NETA) in the USA. Do you think something similar should be done in the UK ?
I just feel we have to raises awareness of this very common, very ordinary, but weirdly concealed condition.  If we need a special day or a special month, or a programme on television or an article in the National press, then let's do what we can to make all of those things happen.  I remember a time when no one dared admit that they, or anyone they knew, had suffered from cancer.  They didn't like to say the word.  Well, we say the word now all right and, as a result, we are far, far better at treating cancer and much nearer a real cure than we were.  Let that be a lesson to us.

What’s the next project you’re working on in your career?
We are all waiting with bated breath to see if there will be a Downton Abbey film, and I am about to start work on The Gilded Age for NBC Universal.  Then another film I've written, The Chaperone, is in post production in New York and School of Rock is still running on Broadway and in London.  So there's plenty going on.

Anything else to you’d like to add?
I don't think so.  I just want to see more openness, more awareness and more progress in the various treatments.  Does that sound like too much to ask?

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