Managing dystonia


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Unfortunately there is not yet a cure for dystonia. However, a number of treatments are available and most people do manage to develop successful strategies for living with dystonia.

As one of our medical advisers, Dr Marie-Helene Marion, explains here, this can be best achieved if the patient takes control and becomes the actor of their own condition.

Everyone is different and so what this means in practice will vary from person to person. But, to manage dystonia effectively, patients need information about all aspects of the condition.  Important areas include:

 

Managing treatment of dystonia

Communicating with healthcare professionals

It is vital to establish a good dialogue with the healthcare professionals responsible for your care. Together you should agree the right approach to treating dystonia and agree and document a care plan. This should be reviewed regularly and revised if necessary. Click here to for some tips about talking to healthcare professionals.   

Dystonia treatments provide significant relief for the vast majority. However, a minority of patients report receiving limited relief. This can be a distressing experience. There are a number of steps that can be taken if this happens. It is important to have an open discussion with the person responsible for your care – it can also be a good idea to call the Dystonia Society helpline to discuss. . Click here to learn more about the steps if botulinum toxin injections don’t work.   

If you are not happy with the treatment you are receiving:

  • It is often worth discussing this with the Dystonia Society helpline
  • It is always important to have an open discussion with the medical professional responsible for your care and agree changes
  • If after discussion with your current healthcare professional things don’t seem to be improving, you can request your GP to be referred for a second opinion (they don’t have to agree but usually do)
  • If you feel you’ve got stuck, you can talk the Dystonia Society advocacy service

Managing pain

Some people with dystonia report experiencing pain while others report none. Pain is most commonly experienced by those with neck dystonia and/or generalised dystonia although some people with other types also report experiencing pain. Steps can be taken to help manage pain. To read more about managing pain click here.

Other helpful support

In addition to core treatment, other support can include a speech and language therapist if your speech is affected and an occupational therapist who can help you make adaptations to your approach to everyday life and make it easier to cope.

 Sources of information

It is important to understand what dystonia is and what treatment options are available. As well as this website, other sources of useful information include

 

Care of the body

Many people with neck, hand or generalised dystonia report finding physiotherapy helpful. Because of the specialised nature of the movements in dystonia, this treatment needs to be provided by a specialist neuro-physiotherapist who has a knowledge of the condition.  Physiotherapy can only be successful if there is a commitment by the patient to do the regular exercises prescribed by the physiotherapist. Click here to learn more.

Physical exercise can help improve flexibility, endurance and strength, lose weight and reduce tiredness. What works is specific to each individual – especially for people with dystonia where the severity and type of dystonia will affect which approaches are suitable. You should always check with your consultant before taking on a new exercise regime to ensure that it is appropriate to your condition. You also sometimes need to be careful about weight training – click here for info.

Diet

Diet can be a challenge for people with dystonia. Some forms of dystonia make eating difficult and/or cooking difficult or dangerous. Also, constant activity can use up energy so it is important to get sufficient calories. Click here for information on managing diet.

 

Managing the feelings associated with dystonia

Coming to terms with a diagnosis of dystonia is a challenge for everyone. There will inevitably be a process of adjustment which for many will be distressing. It can often be helpful to talk to our helpline during this period. For some tips to help cope click here.

It is also important to be aware that, although mental health conditions do not normally cause dystonia, there can be an important relationship in some cases between dystonia and mental health conditions such as stress, depression and anxiety. Mental health is a sensitive topic for many people with dystonia as many cases of dystonia are initially mistaken for a mental health (or psychological) condition. In the vast majority of cases, dystonia is a neurological illness and does not have a mental health cause.

Mental health conditions are very common and nothing to be ashamed of. If someone with dystonia has a mental health condition then it is vital to ensure that it is treated - as this can substantially help the process of managing dystonia. Click here to read about dystonia and mental health.

In addition, some people find that complementary therapies can be helpful in reducing stress. In a recent questionnaire, 62% of those who tried Mindfulness (meditation) reported it as being helpful.

 

Managing employment, daily living and social activity

Work

Dystonia counts as a disability and so is covered by the Equality Act (2010). This gives the employee protection by preventing the employer discriminating and requiring them to make “reasonable adjustments”. Reasonable adjustments are changes to the workplace to help employees cope with their dystonia. What is reasonable depends on context and will vary with job and workplace. Examples could include flexible hours, specialised equipment to reduce discomfort and adjusting position of a desk.

To claim a reasonable adjustment, the employee needs to disclose their condition to their employer. Ideally, this would be always possible but not all employers are supportive so it requires consideration. However, if there is a health & safety risk, then you must disclose otherwise you may be liable (examples include jobs involving driving or operating machinery).

  If you have concerns about your employment you can always discuss with our advocacy service.

Family / friends

Managing dystonia may require lifestyle changes and it may be helpful to ask for support from family / friends for some activities. So an open discussion about the condition may be helpful if possible.

A good question to ask yourself is: “Am I asking for the same help that I would give to someone else if they were affected by dystonia?”

Home

Helpful aids in the home can include high backs / supports for chairs, special kitchen utensils (e.g. with thicker handles), walk in showers, aids to get in and out of bath, adjusting heights of shelves / items and speaking books.

Other tips from members of the Society include pacing yourself, not feeling guilty if housework not done, using kneeling pads or raised flower beds in the garden and gardening tools with longer handles.

Social

Many people with dystonia do not like going to social events and 75% tell us it has affected their social life. It is important not to get isolated and this can be a challenge.

Tips for coping socially include:

  • Using Dystonia Society helpcards or leaflets to explain the condition (these can be obtained from the helpline).
  • Rest beforehand.
  • Sit down first so you sit where it suits you.
  • Wearing a scarf can help cover neck twisting.
  • Choose the menu to suit / soup can be difficult.
  • If you need help to cut food, just ask - people will understand

 

Getting the support you need

Benefits

You can get help applying for benefits from your local Citizens' Advice Bureau. People with dystonia are often unfairly turned down for benefits such as Employment Support Allowance (ESA) or Personal Independence Payment (PIP). It is important not to give up if this happens. Often these decisions are reversed on appeal. Contact our advocacy service for more information.

Dystonia Society

We provide support  through:

Other resources

You can find other sources of online information here. Information for carers is here.   

 

Last reviewed January 2014

Disclaimer
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.

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