Dystonia is a neurological movement disorder caused by incorrect signals from the brain that trigger uncontrollable and sometimes painful muscle spasms that can force the body into twisting, repetitive movements or abnormal postures.
Physiotherapy (physio) is tailored specifically to the patient’s needs, as each presentation of dystonia is unique to each person; this means that exercises prescribed to one person may be slightly different to exercises prescribed to another. Treatment may include exercises to:
- Regain movement in stiff joints
- Improve nerve glide (encouraging nerves to glide ‘normally’ during movement)
- Strengthen weakened muscles
- Regain normal length in tightened muscles
- Improve postural symmetry/alignment
- Improve balance
- Develop a self-management strategy to aid reduction and management of symptoms.
Benefits of physio can include increased joint mobility, flexibility, balance, postural control, reduction in dystonic activity, pain, correction of inappropriate compensatory strategies and above all a self-management strategy and positive plan to improve stability.
Physio is widely used to help manage dystonia especially in Europe – with many patients reporting it helpful (especially for neck, hand and generalised dystonia). However, it should be noted that to date research studies have not identified which techniques are most effective in the treatment of dystonia and approaches differ between physiotherapists. Below are listed some of the techniques which are sometimes used – but not all therapists will use all techniques.
Not all types of physio are suitable for all forms of dystonia and inappropriate exercises or stretching may make symptoms worse. It is important that physio is provided by physiotherapists who know about dystonia – for instance neuro-physiotherapists who specialise in working with people affected by neurological conditions. It is also important to receive guidance from an expert before starting an exercise regime and to be aware that because a regime has worked for one person does not necessarily mean it will work for another.
The process of physiotherapy
Physio is an ongoing process involving sessions with the therapist and exercises at home (usually at least 15 minutes per day) – the outcomes can be significant but it is not a quick or easy fix. It needs to be approached with commitment and optimism and integrated into everyday day life and activities of daily living.
The first session will include a review of medical history and a physical examination to evaluate the problem. The physiotherapist will discuss their findings, agree treatment goals and prescribe and start a tailored treatment plan.
The treatment plan will involve exercises that are expected to be done at home. The therapist will go through all the exercises to ensure the patient can perform them correctly at home. This is the point where the patient’s commitment to physio becomes crucial. Treatment success is ultimately in the hands of the patient and is dependent upon them following the advice of their therapist on how often the exercises need to be done. Should a patient encounter any problems or changes in their condition, they will need to discuss this with their therapist.
Progress is reviewed at follow-up sessions and the exercise regime adjusted as appropriate. As the patient gains confidence in managing the exercises without support, and acquires the ability to integrate what they have been shown into everyday life, sessions can become increasingly infrequent.
Physio techniques that may be helpful
A range of techniques are used in physiotherapy and it is the therapist who decides which techniques are most appropriate following assessment of each individual case. A selection of techniques that are sometimes used are as follows (remember it is essential to discuss with a therapist with knowledge of dystonia before trying any of these as they are not always appropriate).
This involves mobilization of the joints as a hands on approach in order to give back available range that has been lost so that it is then easier to correct postural alignment.
Re-education of “normal” muscle movement
This involves a two fold approach of reminding the muscles of their normal length and then teaching them to work in the appropriate way and strengthening them into function.
The muscles that control our movements function in highly complex ways. Muscles work together in pairs or groups to produce body movements. So for instance, to pull the head forwards, the muscles at the front of the neck contract while those at the back of the neck lengthen. The reverse applies if the head is pulled backwards. To make these movements smooth, all the muscles must work together in harmony. By causing excessive activity in some muscles in the group, dystonia disrupts this harmony resulting in abnormal and often painful movements and postures.
As a result of the abnormal activity in the dystonic muscle, some non-dystonic muscles may also be pulled out of their normal shape position and contract inappropriately to give support. One approach in physio is try and address these abnormalities using re-education. The idea is to use exercises to remind both the dystonic and non-dystonic muscles of their correct length and mode of working.
Examples of neuromuscular re-education are balancing exercises and activities, strengthening exercises using gentle resistance and stabilising exercises for the muscles around the joints. The process aims to break down movements into simple steps in order to re-educate movement patterns. The therapist may also use direct techniques such as specialist massage and trigger point therapy whilst gently reminding the muscle of its correct length and encouraging “normal” movement and appropriate nerve glide.
Correction of posture
As well as enabling movement, muscles also have sensory receptors (proprioceptors) which provide the nervous system with crucial information about the position of the different parts of the body. The process which is called proprioception is decreased in neck dystonia because the neck has lots of proprioceptors that are inhibited when the neck is held in an incorrect position.
Therefore people with neck dystonia are frequently very inaccurate when assessing the position of their head or whether their posture is correct - for instance not being able to assess when the head is corrected to the midline point, patients often report that they feel this is not comfortable and cannot possibly be the midline point. This is because the patient may have adapted to a 20 degree tilt, so any movement away from this feels abnormal to them.
- Through doing daily exercises in front of a mirror, the patient through the use of visual feedback can attempt to relearn correct posture and head position. The exercises involve a combination of holding the head still and upright for short periods with rest in-between and range of head movement exercises. For more info on mirror work click here.
Other proprioceptive exercises
- There are a range of other techniques that can help correct posture so that the patient can ensure the correct posture even when not in front of a mirror or during movement and exercises. One example is bio-feedback where a machine is used to alert the patient of muscle tone by monitoring electrical activity in the muscle. This can be used to decrease muscle spasm and promote relaxation. it can also be used on non dystonic muscles which have been lengthened and weakened to teach the patient when they have achieved the necessary muscle contraction. The unit by monitoring electrical activity in muscle sends a signal alerting the patient to what is happening in the targeted muscles. Like mirror work it is a feedback mechanism, and is used during treatment, with the aim being to be able to gain control ultimately without the need of the mirror of biofeedback.
Fascia is the soft connective tissue that provides support for muscles. It forms an integrated network (called Anatomy trains) which runs from the top of the head to the foot and across one arm to the other. When dystonia affects the muscles, the twisting it causes can create defects in the fascia, resulting in impaired fascial movement. The fascia gets short and tight and needs to be reminded of its normal length and glide. The short and tightened fascia may also impede the ‘normal’ movement of nerves during body movements.
Treatment can include hands-on techniques to release fascia adhesions or exercises specifically designed using the anatomy trains concept. As the fascia is an integrated network (anatomy trains), therapists are able to work on the fascia away from the primary problem. With neck dystonia, therapists often start working with the fascia in the lower back or arms and then work towards the neck. A self-management strategy can also be taught to help with this at home to decrease symptoms.
How do I access a specialist physiotherapist with expertise in dystonia?
It is not always easy to identify therapists with the appropriate skills. If you would like to be referred, the first step is to ask the Consultant or GP responsible for treating your dystonia. It is important to be clear that you would like to see a specialist physio who has experience in treating neurological movement disorders. However, at present, there is not an obligation on the doctor to make a referral.
Please note that our helpline does not currently have a list of physiotherapists with exeprtise in dystonia so you will need to talk to your GP or neurologist to obtain details of physiotherapists located near you.
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.
The Dystonia Society is not responsible for the consequences of your decisions resulting from the use of this information, including, but not limited to, your choosing to seek or not to seek professional medical care, or from choosing or not choosing specific treatment based on the information. You should not disregard the advice of your physician or other qualified health care provider because of any information you receive from us. If you have any health care questions, please consult the relevant medical practitioner.