In this article, Dr Marie-Helene Marion writes about the experience of living with dystonia. Everyone’s experience of dystonia is different but sometimes dystonia can be difficult to cope with for a number of reasons. This article discusses why and what can be done to help.
1. Dystonia can be a source of disability, related to the fact that the dystonic spasms are caused by action and interfere with daily life activities. As soon as the patient with blepharospasm tries to watch TV or drives, his eyes close; the patient with jaw spasms has major difficulties chewing; the patients with neck dystonia, difficulties when walking, and looking in front of him; the patients with writer’s cramp when writing and the spasmodic dysphonia when speaking.
2. Dystonia can be a source of distress as the diagnosis of dystonia is often delayed. The awareness of doctors is low about dystonia as it is a rare condition, but it is not the only reason to explain the difficulty for the diagnosis. The presentation is often disconcerting, with the presence of a “geste antagoniste” (for example, touching with one finger the cheek can sometimes control severe neck spasms) or a sensory trick (gum kept in the mouth sometimes alleviates jaw spasms), the occurrence on specific tasks, the diversity of the symptoms depending of the site of the dystonia, and the existence of a stressful event prior to the onset of the symptoms. The natural history also is often disconcerting, by its capricious fluctuations with remission and worsening without clear reason.
3. Dystonia can be a source of anxiety as the patient tries to understand what’s going to happen in the future. The patient has difficulties to understand the natural history of the disease: the spontaneous changes, the worry about dystonia spreading in a minority of cases and to know what are the right expectations from the treatment. Does the treatment influence the course of the disease? What I should do in my daily life to get better?
4. Dystonia can be a source of despair as getting the right treatment is often an obstacle course. In particular it can be challenging to find a specialist in dystonia and a botulinum toxin service which perform EMG guided injections into deep muscles, like the jaw muscles and the vocal cords or the forearm muscles. Do I need to see a neurologist, an ENT specialist or an ophthalmologist for the toxin injections??
The diversity of the response to treatment is also frustrating and the toxin injections have a trial and error process before finding the right dose for each individual. The patient needs to understand the therapeutic strategy, such as the role of the drugs, of the botulinum toxin injections, of the surgery and of the self-healing process (relaxation, physical exercises).
Can we help dystonic patients to face all these challenges?
One of the main answers for me is that the patient needs to become actor of their own treatment.
Clear information has to be available for the patient: Every patient with dystonia in a way is unique, in the type of spasms and in the response to treatment. The patient needs to be well informed. A better knowledge of the expected benefit and of the possible side effects from the patient will help the doctor to find the right treatment and make sure the treatments are delivered as effectively as possible.
Treatments provide significant relief for the vast majority. However, a minority of patients report receiving limited relief. This can be a distressing experience. The patient also needs to know what to steps can be taken if the treatment is not working well - click here to read an article on what to do if botulinum toxin is not working.
The level of anxiety will decrease, as the patient will be able to anticipate and influence the progression of the dystonia by physical exercises, and by adjusting daily life activities to the condition.
In addition, it is important to understand that, although dystonia is a neurological illness and does not have a mental health cause, there can be a relationship in some cases between dystonia and mental health conditions such as stress, depression and anxiety. Where these mental health conditions occur, it is important they are treated alongside the dystonia. Click here to read more about dystonia and mental health.
What information is available now in UK?
1. Information online from The Dystonia Society:
- has developed information on all aspects of managing dystonia
- has used the modern technology to reach a large population. Google advertising, new website, forum discussion,
- page on Facebook & Twitter... very soon there will be no more excuses to not know the word dystonia!!
2. Local events and roadshows organised by the Dystonia Society:
- Living with Dystonia events. Hear the experts, meet others and express your concerns, trial complementary therapies – click here to learn more.
- Managing Dystonia roadshows (being piloted in North West and Scotland). Learn about and discuss dystonia in small groups - click here to learn more.
3. If you need to discuss your concerns or get support accessing the treatment you are entitled to you:
- Helpline 0845 458 6322
- Advocacy 0845 899 1040
4. Myself, as a neurologist specialised in dystonia, I have developed this blog, www.infodystonia.com, to share my experience in treating dystonic patients over the last 25 years. For the healthcare profession, I have founded the British Neurotoxin Network (BNN) www.neurotoxinnetwork.org to gather all the clinicians involved in the Botox treatment of dystonia in UK for sharing information, techniques and new developments. The British Neurotoxin Network (BNN) website, also hosts UK service maps to localise easily by the patients or the doctors where is the most appropriate centre for treatment.
I am also organising workshops and master class to share knowledge and skills with my colleagues who want to be involved in the care of dystonia.
5. The patients also are working hard to go forward in the best care for dystonia in organizing local support groups under the umbrella of the Dystonia Society. The list of all these groups in UK are available here.
When meeting dystonic patients, it come to my mind that the British motto, “Keep Calm and Carry On” is what most of the patients have courageously chosen when living with dystonia.
Last reviewed January 2014
The Dystonia Society provides the information on this page as general information only. It is not intended to provide instruction and you should not rely on this information to determine diagnosis, prognosis or a course of treatment. It should not be used in place of a professional consultation with a doctor.
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