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Documentary about Tourette's Syndrome


Guest Kitty

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Hi everyone :whistling:

I was reading an article this morning about a documentary soon to be aired on Channel 5 about a guy who has been diagnosed with Tourette's and his struggle to find the right medication to overcome it.

I'm unsure of the transmission date, as the article did not say when it would be aired - I think it will be sometime soon though, as it's part of their documentary strand 'Extraordinary People' which starts on Monday 18th October at 9.00pm.

Anyway, just wanted to let you all know about this as I thought it would be of interest.

Take care all

luv Queenie

xx

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Have noticed that this is on tonight. Sorry if this has already been flagged up but it is called "The Man Who Swears He's Normal" on Channel 5 at 9pm.

Will video it.

Sally B

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Yep, I did and also thought it was very good. I was particularly interested because it focused on patients of Dr Hugh Rickards who is my TS specialist. He really is excellent and a very human professional. I 'liked' the way the programme covered common, but less well publicised, aspects of TS such as depression and low self esteem. I really felt able to relate to the sufferers and the frustrations they come across in their everyday lives.

I also think it covered drugs well. It talked about their side effects but also the very positive effect they can have on tics. I've had a new lease of life since Dr Rickards stabilised me on meds and I've now got a good (albeit not perfect) balance between benefits and side effects. For instance, I could get even better tic control if I took a bit more Sulpiride, but it would make me drowsy. At my present dose I don't feel too tired and have about 70% tic improvement which is great. To be honest it was the violent tics which got me down and I was having lots of injuries which were difficult to explain away :crybaby: . But those days are thankfully gone.

Dr R mentioned the possible genetic link and I noticed he said that TS tends to become milder as it passed down the generations which is most encouraging.

In summary I found it interesting, informative, non sensational and very human. My main frustration was that I get apalling reception on CH5 so it was pointless recording it :huh:

Catherine :)

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What an idiot I am - after spotting it and posting on here I completely forgot to video it! :wallbash:

Can you tell my OCD is playing havoc at the moment!!!

Sally B

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I'm not really sure of Dr R waiting list now. I was first referred about 6 years ago and only had to wait about 3 months. But since then of course, his excellent reputation has got out. Also, I think Prof Mary Robertson from London has retired and she was considered to be the top dog on TS. I have heard her post has not been replaced full time and I imagine that Dr Rickards is probably the one who everyone wants to see now. People come from all over the UK to see him. He's a wonderful man.

The only thing which may bring Dr R waiting time down is that he has a small team of specialist staff who work with him but assessments do take a long time. The first time I went to his clinic I was over 2 hours with the Registrar and then Dr R came in to talk with me about treatment options etc. Being diagnosed after 25 years was quite an exhausting but relieving experience!

Have you ever thought about your brother seeing a TS specialist or even a psychiatrist/neurologist?

Catherine :wallbash:

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Hi ittyk

Forgive me if I'm wrong, but I somehow get a sense that your brothers care is a bit fragmented? Does he have a care co-ordinator who oversees all his treatment ie for his aspergers, TS and learing disability? It's an easy thing to end up with patchy care and I was initially in this situation before I was referred to Dr R. I had a neurologist and a psychiatrist in Liverpool and although both were very kind, I was continually passed from one to the other without either taking any real responsibility for my care. I also had a small cocktail of conditions ie depression, Anorexia, OCD and Tourettes. Part in due to my own efforts my care is much better coordinated now even though I still see a psychiatrist, neurologist, psychologist and OCD specialist :wallbash:

If you don't want to discuss anything too publically feel free to pm me. Your brother sounds like a nice guy who must have a real struggle with things. It's good that you're looking out for him even though you have your own difficulties :down:

Catherine

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Hi ittyk

You know reading stories like your brother's makes me really frustrated and angry. I can't believe he has not been followed through as an adult. You know when my TS began over 30 years ago so little was known about it. Even when I saw my dr's in Liverpool all they could offer was meds like Halperidol which sent me crashing into a very deep depression. None of the drugs I tried at first helped and they all made me feel worse to be honest. But nowadays with people like Dr Rickards pioneering new works there are so many more options available. Just yesterday I was talking to my OCD specialist about a new drug called Abilify and it she is considering that for me in the future, even though I'm doing OK on the Amisulpirde.

Maybe when your brother was assessed/treated these kind of treatment options weren't known and somehow he's just slipped through the net ever since. You know your brother far better than I ever could, but I'm just wondering whether he may be suffering from the muscle tension associated with Tourettes. Although he maybe cannot express it, we don't really know how it affects him :dry:

If he was reassessed maybe you could insist he sees a TS specialist who may just be able to make his life a little easier. I'm not suggesting for one minute that he be drugged up, but I do know that moderate doses of meds do help me cope with life so much better. I'm very aware that when people have learning disabilities their other health needs are often neglected. I don't want to upset you but the system does not prioritise their needs. I mean even before they are born they have less rights than 'able' or 'normal' babies. I make no apology for saying this, but I feel it is a national scandal that 'disabled' babies can be aborted right up to birth. Why should their lives be so undervalued :mad2:

I'd love your brother to see Dr Rickards as I feel he'd be very considerate of his needs. It may be that he suggests continuing as he is, but it would be nice to know. Incidentally, the Tourettes Assc can supply you with a list of UK TS specialists and there may well be some in Scotland.

You continue fighting for your brother-he's very fortunate to have you looking out for him :)

On a different note, have you heard of the book 'Making Allowances'? It is published by Bluecoat Press and I wrote a chapter for it :tongue: . It is a little out of date now in that my life for one has moved on a bit since I wrote my story about 6 years ago. But it gives a fascinating insight into what it is like to live with Tourettes. It is a series of personal stories including those from children and parents.

If you are interested, then either I can give you the details, I think it's about £8. Alternately, I'd be happy to let you borrow my copy for a while. Maybe your mum would like to read it too.

Anyway do let me know, and if you want to borrow it then pm me your address and I'll pop it off in the post to you.

Think about asking for your brother to be assessed again as all kinds of treatments may have moved on and there could be something which could help him. However, it also sounds as though you're doing a pretty good job as it is.

Catherine :)

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