LETTERS

This section is devoted to correspondence we receive from members and the public in relation to Tourette Syndrome. All appropriate letters are answered and a few of general interest are selected for publication. We would however, ask that you read the Disclaimer on this page so that you understand no medical advice nor treatment is implied. Answers are meant as support and information only. Your own physician should always be consulted in relation to any change in treatment or medication.

Dear TSAA,

Enclosed is $100 donation. Each year I am choosing an organisation to donate to.
For 2008 I choose Tourette Association, as having your support and access to information when my family needed it was so important.

My daughter J is 23. When she was 14 our family moved to Australia. J was settling into a new country and co-ed high school when she was diagnosed with TS, which we had never heard of.

It was a challenging time, followed by a longer more challenging time of Doctors, Psychiatrists, Tourette medication, antidepressants, some of which reacted with each other. Also learning about TS and coming to terms with tics that got stronger and more regular during her early-mid teenage years, and weight gain from medication.

I am happy to write at 23 J is living in a caring, supportive relationship, has her childcare diploma, she was working at a childcare centre but has just started a nanny job, has her licence, and car. J is happily living without antidepressants or Tourette medication. I feel this is partly due to J participating in personal empowerment courses over the last few years and has accepted she has TS and learnt skills for managing her tics.

Thank you for your support.
T

Dear T,

We are delighted to hear of your daughter’s achievements. It is rewarding to know she has developed so successfully and has a wonderful life ahead of her. We appreciate the time you’ve taken to share your story and insights. Without the support and generosity of people such as yourself the TSAA could not function. Many thanks.

TSAA Committee



Hi there,

I have been in an on off relationship with a man who has tourette’s. He doesn’t show any physical tic’s etc (or is very good at controlling them) but he does suffer from the depression and low self esteem that comes along with it. He is 37 years old, and is successful in his career, but his personal life is a bit of a mess.

My first question is how do I find out more about tourettes and how can I help or be more understanding without making him feel like he has a problem??? Do you understand what I mean??

Secondly we have a 15 month old daughter and I was wondering what signs if any I should be looking our for?

I am not sure if you are the right people to get in contact with, but if you could put me in the right direction I would be greatly appreciative

Kind regards
C.

Hi C
Thanks for writing - you have asked a lot of questions and there are no simple answers, I am afraid. This is a complex and individual condition and how it manifests in each person is a mix of severity, personality and life experience. Usually in adulthood, people find the tics less intrusive and are better able to control them. What goes on internally, however, is still very much present and can rear its head from time to time in response to stress and make life uncomfortable, not just for the person with the disorder, but for their significant others, too! We don't conceal TS - there is no shame in having it - it is on a par with asthma or diabetes in that it can affect your life but doesn't have to compromise it. Not talking about TS may engender a feeling that it is to ashamed of - which is not true. It is simply a genetic dysfunction which causes symptoms which can be annoying and sometimes intrusive, but it doesn't affect intelligence and is not psychiatric.

Depression does frequently travel with TS, but it is not yet clear whether it is an intrinsic part of the disorder or a response to living with it. It really doesn't matter, as the symptoms of depression can compromise one's enjoyment of life. I would suspect most doctors would treat depression first and worry about tics and other behaviours afterwards. There is no formula for this - medications can work for many people, whilst others do not find them useful and dislike the side effects.

In my experience, the single most effective thing a partner can do is to provide acceptance and understanding that this condition, AT TIMES, can render people emotionally volatile, sad, bursting with energy which is often uncontrolled, angry and difficult. At other times, people with TS can be entirely wonderful and full of joy and life, so it can look a bit like a roller coaster ride. However, we have many skills to manage and help with the symptoms and I am going to send you my paper that I gave at the Third National Conference on TS in Brisbane in 2005. It contains a distillation of many things I have learned over 12 years of helping people with TS. There is much the individual can do to moderate and control their response to having TS. A lot of small things can make a difference and they can include such things as removing known triggers to symptoms, getting professional help in the form of counselling (research is backing up this idea in recent times) and trying to maintain an orderly existence, which does help. People with TS do not respond well to change in general. Stress and anxiety create more symptoms.

In relation to your daughter, I would not worry - enjoy this beautiful time with her. Evidence shows that even if she were to inherit the gene(s) for TS, only about 15% of the next generation goes on to develop symptoms. Research is also taking place on whether or not an environmental trigger needs to be present to set off presentation of symptoms. So the chances of her having it as a recognisable disorder are less than you probably think. Symptoms generally start to show in a slow progression from about 4 or 5, so don't let your worry spoil this wonderful time now. Worrying won't change anything.

Please feel free to write again or peruse our website which has some very good links to other sites. We now have 3 support groups in QLD and they often provide a lot of help to people who have felt isolated with this condition. Speaking to others with similar problems or experiences can be very liberating. If you would like to join TSAA to help him, please do. We have quarterly newsletters and often arrange information evenings or seminars which may be very helpful in learning more. Forms to join are on the website.

Well, I hope I have helped a little. Good luck to you both!

Elizabeth Burns
Tourette Syndrome Association of Australia Inc.


Thank you for your informative Website.

I have suffered Tourettes Syndrome since early childhood. I am now 58 years of age and the condition shows no sign of waning. There is a plethora of information on the Web about the condition, both from Australia and overseas. I've noticed that much of the information is slanted towards assisting parents with children who have Tourettes and not too much is mentioned about long term adult sufferers. Perhaps it is assumed that adults have learned to live with the condition and the impact on children still facing life ahead is much greater.

Yes, it is true that one does learn to live with the condition. I have held a government job in a stressful occupation for 39 years. Although the Tourettes did not stop me from achieving, it certainly did not help the situation, especially in social and group settings.

At this stage of my life I have found some new Tics have emerged that weren't there in my younger years. Some of these are quite bizarre and frustrating. Like all the other tics, they wax and wane in classic fashion.

In my experience it has often been the hidden symptoms that others can't see that cause one the most frustration, such as mood swings, to name one example.

The good thing about getting older is that a person learns to sort the wheat from the chaff in human experience. We also learn not to get too uptight about the things we can't change but to enjoy the good and positive things in life. I certainly have those things in abundance. Having said that, I must admit I look forward to the day when I see the headlines "Cure for Tourettes Syndrome has been found" How wonderful it would be to spend the latter part of my life free from its constraints. I'm sure that thought would be echoed by millions worldwide, both young and old who suffer from this strange and mysterious disorder.

I hope you find something in my story of interest to your readers. Please keep up the good work.

regards
E



Dear E,

Thank you for your interesting letter. We have tried many times to organise activities, particularly social, for adults with TS. We have been singularly unsuccessful, finding it very difficult to get people to attend. In part, as I have been told by more than one person, this is because many adults do not like talking about it and indeed, some are concerned about developing more tics as a result of being exposed to others! I believe these fears are mainly unfounded and that involving oneself in helping others can often result in helping yourself!

We now have 3 support groups in Qld, and you are right, they are mainly composed of families with young children who have been diagnosed with TS, but this simply reflects that TS is being diagnosed younger and younger today, which is a good thing! In any event, I am sure anyone with TS would be welcome at our support group meetings, and it does a powerful good for young people to see that many adults have TS, that it isn't a life-ending diagnosis! We used to have one adult member who would always take the time at our picnics to step aside with the young members who had TS and form a little circle and talk amongst themselves about what it was like for them. This always was very well received by the children and gave them something positive to take away and think about.

Thank you for sharing your thoughts - we too, hope for a cure in the nearer rather than farther future! There is quite a bit of interest in deep brain stimulation as a treatment for severe TS - so far it is considered experimental due to the risks of brain surgery involved, but long term study may hopefully show it to be effective for the more severe symptoms of TS. Hope you are a member of TSAA, as we will report it in our newsletters, as soon as the cure is found!!

Best wishes to you,
Elizabeth Burns
Tourette Syndrome Association of Australia Inc.


hi guys,

Hoping you can shed some light on some issues we are facing with our wonderful 14 year old who has tourettes.
He also has oppositional, argumentative and uncooperative behaviours that I am led to believe are also symptoms of tourettes. how do we deal with these behaviours as I feel I have scoured the internet for hours only to come up with 'that behaviour modification' does not apparently work with tourettes.Is this reliable information?
We have also tried a number of strategies and these haven't been very successful, they have tended to get us all cross instead.
There seems to be no information out there to deal with his situation and I'm hoping perhaps you could suggest any reading material or anything that may point us in the right direction, as I am getting square eyes from the hours i'm spending trying to research.Hoping that someone else has already been there and can help.

thanks for your time
kind regards,

S .

Hi S-

Thanks for writing - I think we have all been there at one time or another. The questions you ask are reasonable but I am not sure I can give you all the answers. I think one thing to keep in mind here is that oppositional behaviours and general uncooperative behaviours are quite common amongst the age group you are living with! 14 years old is probably peak time for TS symptoms in boys. Factor a neurological condition which is annoying and disruptive into the already hypersensitive adolescent psyche and no wonder you have some trouble!! Many adolescents who have no neurological problems have problems in adolescence. The good news is that these problems in the main die down after physical maturity is reached.

Latest research from the US indicates that cognitive behaviour therapy does help the problems of Tourettes. I attach for you a summary of a talk given by Dr Sam Zinner from the US TSA last year when he visited Australia and spoke to our group. It may help give you some ideas. One other point I should make is that confrontation with a person with Tourettes is a lose-lose situation. This condition implies somewhat delayed development which usually results in emotional conflicts as they find they cannot meet the expectations of the world around them. To spend any time in emotional confrontation will provide no solution. One has to pick the moments to deal, to modify behaviour, to get them to see another point of view. They do best in a calm environment with calm behaviour being modeled for them by their peers or family. This is a difficult condition to live with and many people with TS find that not only do they have to put up with the annoying aspects, but quite often they are ridiculed or harrassed by the outer world for these same behaviours. It is a double penalty. I think acceptance and understanding works much better than most other things in trying to modify behaviour. Calm and reasoned approaches have better outcomes.

I am attaching for you here part of a paper I delivered at the Third National Conference on TS in Brisbane in 2005. There are strategies in it that I have learned in doing this work for many years. Perhaps you will find some things of interest and help in it. I encourage you to look at our website and some of the publications listed there. We have some good resources you can buy from the website with a credit card. The new DVD from the US called 'I Have Tourettes, but Tourettes Doesn't Have Me' is excellent - won an Emmy for outstanding children's programming.

Sincerely,
Elizabeth Burns
Tourette Syndrome Association of Australia Inc.



Hi,

My Nephew was diagnosed with TS at the beginning of the year. His tics until now have been fairly mild, however he seems to have a 'new tic'. My question is, when he is having the tics should we bring it to his attention and let him know that he is doing it or do we simply ignore it? It is my understanding that the tics can be 'set off' by nerves and anxiety, if it is brought to his attention then that will make him more nervous and possibly result in more tics, more frequently, or do we simply ignore it?

Regards
B

Hi B

Thanks for writing - your question is sensible. I am attaching here a leaflet we send to parents regarding the issue you mentioned. In my experience, passing comment is likely to do exactly as you suggest - raise his level of anxiety about himself. You don't say how old he is, but in young children, say up to 8 or 9, often many tics go un-noticed by them, so to point them out would be unhelpful as it would just call attention to something he cannot help, which would probably result in more symptoms. However, as children mature, to always avoid talking about very obvious tics may suggest to them that there is something to be ashamed of in having them. It is like ignoring the elephant in the room - in my opinion to share concern or to give a cuddle when the child is obviously struggling with heightened symptoms can be reassuring to them - that you care, that you understand and that you don't blame. Humour can often diffuse such situations depending upon the child. Calling attention to the tics is none of those and will probably not help.

I attach here for you a book which you could buy to promote awareness of Tourette Syndrome - it is a very good story of a boy with TS and how he and his family manage life after diagnosis. Your nephew would probably enjoy it very much and it would resonate with his experiences at home and at school. It is our Awareness project for this year and a very nice hardback book. Great for the teacher to read to the class to give understanding about this condition.

The most welcome thing you can do as part of your nephew's wider support system is to be understanding and accepting that at times, he cannot control some of the symptoms of this disorder. Other than that - he is no different to any young man.

Best wishes,

Elizabeth Burns
Vice President
Tourette Syndrome Association of Australia Inc.



Hi,

My 11 year old son has had mild tics for many years. We didn’t realise they were tics until last year. In fact we thought he had allergies! Last year the tics became much worse and were causing him some distress. We were referred to a neurologist and after MRI scans and other tests were told he had a tic disorder. The neurologist told us it was not Tourette’s as there was no family history of the condition and he didn’t have OCD, or ADHD and wasn’t shouting nasty things. Both the neurologist and a child psychologist we spoke to told us it was best to do nothing and it may improve as he gets older. More than a year later D’s tics are still there and while they sometimes lessen they are at the moment very bad. He has both motor tics and a noise he makes in his throat. He has trouble playing the piano because he has to keep turning his head and on the soccer pitch needs to turn 180° and back again when he is chasing a ball. I am convinced D does have Tourette Syndrome but don’t know what to do for him. I have spoken to the school principal and his teacher but the information has not reached other staff members. D has explained to his friends that he has tics and that he cannot control them and he has had no adverse reaction from any child but teachers and other adults question him.

I need to give the teachers at school and other adults he is dealing with information about his condition so that they don’t need to keep asking him what he is doing. While I am sure D has Tourette’s , that is not the official diagnosis so I don’t know what information to give.

D wants to manage his tics in the best way he can and we want to help him. If, as we have been told, ignoring them is the best approach then that is what we will do but we need information about what might make the tics worse and what we could do to lessen them. What is the best approach? Who can help us?
L
Perth
Western Australia



Hi L-

Well your interesting email has outlined a common problem - many physicians do not know enough or are not confident enough to diagnose Tourette Syndrome and find 'tic disorder' much less threatening. However, this is not fair to the child nor the family. From what you have described, your son's symptoms are consistent with TS. This is a spectrum disorder and occurs over a range of symptoms from very mild to very severe and everything in between. Happily, most people have it in the mild to moderate range and it can be managed by a combination of strategies, acceptance, understanding and sometimes, medications.

Unfortunately, by not diagnosing him, the doctors are in a sense minimising something that is obviously causing him distress. The waxing and waning pattern you have described is typical of Tourettes and must be present for it to be diagnosed. Family history is not mandatory for diagnosis, but it is more likely as most TS is genetic in origin. However, it is not unknown for TS to appear without family history. I guess the issue really is that this is causing some problems for him, therefore, diagnosis could act like a treatment in that suddenly, everything can be explained. It doesn't get rid of the tics, but it puts them in perspective and makes the things he is doing normal for the condition that he has! Shouting obscenities is rare, only about 10% ever have this tic and having ADHD & OCD concurrently is possible, but not necessary to have TS.

He is in the most likely period for heightened symptoms - pre-puberty. The changes in his body, the switching on of genes, the flood of hormones to stimulate growth all impact negatively on TS symptoms. Quite often the period of puberty is the worst for symptoms. Usually, when physical maturity is reached, symptoms get better and the person develops better control of them.

My feeling is that you should find a physician capable of diagnosing TS if it is present. Probably contacting the W A TS Association, known as 'WATSO' would be a good place to start. Speak to Irene Gray, the President, and explain the circumstances. She may be able to point you in the direction of an experienced physician. Ph 08 9346-7399. A clarified diagnosis would give you the credibility with your son's school to advocate for him and educate them as to what it means for him to have this condition. It can impact learning, socialisation and behaviour. It is necessary for the school to understand this to treat him fairly and give him the best chance to learn. We are offering any school that requests one a copy of our educational DVD called 'What is Tourette Syndrome?' It is only necessary for the school to contact us via mail, email or phone and request it. This should help them understand, especially once your son has a diagnosis.

I am attaching some literature here for you - it may be of help. You need to self-educate as you will become his best advocate and he needs your help now whilst he is in the grip of symptoms. There are many things you can do to help that do not include medication. I attach here part of a paper I gave at the Third National Conference on Tourette Syndrome in Brisbane in 2005. I hope it helps you.

Best wishes,
Elizabeth Burns
Tourette Syndrome Association of Australia Inc.


Good Evening,

I just have a query regarding tourette's syndrome and some of the symptoms.

I have read a lot of the information on your website and I wanted to know if eye squinting and quick rapid nods of the head (very slight but enough to cause neck problems) are signs of a mild form of tourettes? I also seem to make noises quite like humming and it is very quiet however can be heard by other people. I do try not to do it in front of others however sometimes I cannot control it and it can be embarrassing.

Up until tonight when I saw the story on channel 7's today tonight show I had no idea that this is what it could be. I have suffered through these symptoms since I was a teenager ( I am now 29) and I had no idea what was happening, whether I was just weird or if they were nervous things. I am still at a loss however I feel this is another avenue I can pursue to find out why I do this.

I just thought I would get some advice before I take it to my doctor.

Thanks so much for your help.

Kind Regards
M


Hi M -

Well, thank you for writing - I must say that everything you have described is consistent with TS. I think you have to keep in mind that this is a spectrum disorder, occurring over a range of symptoms from extremely mild to very severe and all shades in between. A syndrome is just a collection of symptoms - where that changes to a 'disorder' is different for everyone, and seems to me to imply some level of discomfort or dysfunction. If your tics are very mild and cause you no further worries, then I would say you are lucky.

I speak to many adults who obviously have TS but have never been diagnosed. For many of those people, just putting a name to what they have experienced over their lives is enough - they don't need treatment or further support - they just get on with living. For others though, whose lives have been affected or compromised by symptoms, then sometimes a diagnosis provides relief and comprehension which is relieving.

If you want to pursue this, if you tell me where you live, what city, I will send you any names of doctors we have who are experienced in diagnosing TS. Treatment for the condition usually consists of management skills, relaxation therapy, counselling in anxiety management, and/or medication which can reduce symptoms but does not cure TS.

I hope this has been of some help for you.

Elizabeth Burns
Tourette Syndrome Association of Australia Inc.


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