Welcome to the homepage of
Rob Oele


The Netherlands.
 
 


 

HALLO,
 
 

In this page I try to reach all of those who are looking for information and support considering  "Spasmodic Torticollis" (S.T.).
 
 
 
 

Look at the typical way neck of someone with S.T. is stretched.
 

This web page is composed in the following way:


The reason for this homepage.

In february 2000 a neurologist diagnosed me as having S.T. Out of, and also against my will, my head pulled to one side (in my case to the right). In severe cases this can even lead to a situation that one's head becomes locked up in a forced, bended position. Although it has been rather bad for me for a while, I have made considerable progress in dealing with this disorder since the moment I knew what I really had. In this page I would like to tell you how I handled my problem and have tried to work my way out of it.
 
 

What is S.T. anyway?

S.T. is a specific kind of so called "Dystonia" which literally means "wrong tension". Only about one or two decades ago the common opinion was that S.T. is of pure psychological origin; these days the belief in a neurological cause has gained much support. But I myself think there are more factors at work, like physiology , mechanical causes and high sensitivity. Also there could be in some cases be a relationship between S.T. and burnout. I also think there are lots of ways to tackle the problems for many of those who suffer S.T.. If you want to know more about dystonia click on a Canadian site:
 
 






The course of S.T.

Usually (alyhough not always) S.T. develops very slowly, almost without you noticing it. It creeps so to say in your life. In my case, the prelimanary stage lasted a few years: the moment I was bowling (which I practised as a hobby) my head suddenly twisted, without me wanting it, to my right shoulder. Once I had thrown the ball, this symptom disappeared just as sudden as it appeared. In "normal life" this phenomenon didn´t occur until one moment in the spring of 1999 when I woke up with my head pressing on my pillow. From then on it got worse and worse in several phases. In the worst phase, I was unable to drive a car and even eating, reading, and computering became very difficult. Anxiety and even panic came into my life: for example on a simple bustrip my body got cramped.

Many people suffering from S.T. have a tale of woe looking in the medical circuit for answers and solutions. Because not really much is known of it by doctors yet, people with S.T. often remain very uncertain (and as a cause of that very unhappy) about their symptoms and complaints. It is not unusual that one has to wait a decade or more before the right diagnosis is made.
 
 

Tackling S.T.

Until the right diagnosis was made, nothing helped me including several therapies like physiotherapy. In my experience (which has been confirmed by by other partners in distress) nor doctors nor -normal- physiotherapists know as good as anything about this disorder. Often they even give wrong advises; for example my physiotherapist told me to go swimming (breaststroke) which actually worked out the wrong way. The turning point for me came when the right diagnosis was made by a neurologist. Although my first reaction to that was one of fear and panic, it also gave me some relief owing to the fact that there was finally a clear explanation for my complaints which were elusive till then. Also it gave me a target to work on.
 
 

Sources of inspiration for a cure.

I must say that internet has been the medium which has provided me with insight in S.T., has given me support and last but not least has enabled me to find my own way to tackle it. In the first place I was really helped by the homepage of a Dutch woman also suffering S.T. (Monique Niessen). She herself has been submitted to a long, fruitless quest trough the medical circuit. We tried to stimulate eachother to cure oneself.

A booklet about several kinds of dystonia, published by the "Dutch association of dystonia patients" also helped me to find my way. This association published another book by the French physiotherapist "Bleton" as well. For as far as I know it hasn't been translated in English (alas!), but I could be wrong there. His book is edited by "Editions Frison-Roche" in France. Those of you who can get hold on to this book and understand French or know someone who can translate French into English, will be helped much. It contains a lot of excersises specifically designed for S.T. patients; it really has been a great help for me.
 
 

Inspiration from America.

But the most inspiring thing for me came from an American woman living in Santa Fé whose story also is on internet. Click on the picture to get to her site.
 
 






Her name is Abigail Brown Collins and she herself has suffered long and hard from S.T. But because of her strong faith and dedication to dayly physical exercises she has been able to overcome her handicap reaching the point where she is virtually symptom-free. On the basis of this succes she founded her own "Spasmodic torticollis recovery clinic" in which she receives and treats 1 or 2 S.T. patients every week. I myself am not religious (I'd consider myself to be a humanist) but I admire the positive belief out of which she works very much! Especially in the beginning of my torticollis we had frequent contact by e-mail and every time her "personal touch" helped me al lot. She answered all my questions and gave practical advices that worked.
 
 

How did I try to cure myself?

Since the diagnosis of S.T. was made I have gathered much information and inspiration from internet. Luckily, I have been able to convert this to a set of treatments for myself:

This approach was succesfull for me. The original spasms have almost disappeared. On the other hand I must say that (periods of) stress evoke the spasms again be it not with the intensity of the original phase. So I think it is necessary to handle this stress on a kind of deeper level. Now I especially try to work on my attitude towards work or other possible distressing factors by better managing my limits and giving myself the opportunity to take brakes to relax when necessary.
 

Feldenkrais therapy.

In the course of 2001 and 2002 I followed, practically every week, a therapy called Feldenkrais. This kind of therapy has the intention to make you, step by step, aware of how the muscles and musclegroups in your body work. This is done, in a one to one relation or groupwise, by a practioner who gives you clues and indications. The point is that these muscle(groups)s are "invited" to behave in another way by doing "experiments" which in fact are often small movements which differ from your normal patterns. (This is essentially different from a treatment by a physiotherapist who normally manipulates your body himself, now you have to do it all by yourself). The thought behind all this is that by repeating time in time these other kind of movements different movement-patterns will evolve and also that the neural system regulating these patterns will change. The ultimate goal is to search for, and achieve the most efficient body postures and movements. For someone suffering from dystonia (which in fact are distorted and cramped muscle patterns) like me it is a process requiring a long breath but now I dare say it has helped me a lot. I now try to apply these  "lessons learned" without further help. I think the critical succes factor has been repeating over and over again and (thus) endurance


State of the art.

More than a decade has past since ST was diagnosed and I dare say that I established a rather nice balance in my life thus preventing outbreaks of more severe complaints. On the other hand the ST is always more or less present but not bothering me too much. But last spring (2010) for example after some distressing events I gradually developped a painful upper right arm including cramps from time to time;these symptoms were diagnosed   as being related to my torticollis musles in my neck and shoulder. After physiotherapy and excercises these symptoms are vanishing now.

February 2011


 
 

Further information.

As I mentioned before, it is my intention to enhance discussions about the possible causes of, and cures for S.T.. Maybe you'll find some inspiration in a review I  made about these themes:
 


 

  
 

Rob Oele
Zoetermeer
The Netherlands.