Carol Harris, a Speech and Language Therapist at the John Radcliffe hospital in Oxford, gave a helpful talk on managing speech and swallowing impacts of dystonia at our recent Living with Dystonia event. Below is a summary of her talk:
If you bring someone to mind who is not with you at this moment, you can probably ‘picture’ them, and also ‘hear’ them. How we sound is part of our identity and our individual uniqueness, and changes can challenge our sense of identity, and may have a profound effect on how we feel about oneself.
Eating and drinking with others is often a social event. Difficulties with swallowing can result in poor nutrition and poor health, for example recurrent chest infections, and may reduce the confidence and pleasure of eating with others, potentially leaving the individual feeling very isolated.
It is important to fully understand why you are not speaking or swallowing well as there are many other reasons apart from dystonia for function to change. Other investigations may be necessary to look at your throat, or swallowing action.
Dystonia of speech and swallowing has many variations and individual characteristics, with many different muscle groups potentially involved. Strategies or exercises that help one person may not be so helpful to another. Try to be mindful and aware of your own specific areas of muscle movement, both ‘normal’ and ‘dystonic’ and understand them in relation to when you talk or swallow. Maintaining the mouth and throat in good health will help both functions.
Check for anything that you can change to keep the mouth and throat lining as healthy as possible;
• Do not smoke; advice and support about stopping smoking will be available from your health centre
• Drink plenty; good hydration of the tissues ensures that the natural secretions and wet and thin, lubricating the mouth and throat movements. However, limit the amount of alcohol and caffeine you drink following guidance about the quantity that is appropriate for you
• Avoid habitual throat clearing, sipping water if your throat feels sticky, gently clearing and swallowing secretions. Frequent or aggressive throat clearing can aggravate the throat lining
• Keep reflux of stomach acid controlled, through diet, lifestyle changes, or medication. Stomach acid coming back up to the throat area can ‘burn’ the throat lining, resulting in a poorer voice quality, increased sensitivity, more throat clearing, and a swollen or lumpy sensation
• Asthma should be managed with medications from your doctor. Use a ‘spacer’, and rinse your mouth and throat after taking inhalers with water
• Seek treatment for allergies that may be increasing the amount of mucus in the nose and throat. Dusty or dry atmospheres may also irritate the throat
• Avoid excessive shouting and straining of the voice
• General stress and tension levels can contribute to poorer health. Take stock of other areas of your life; can you make any changes and adjustments to manage tension and stress better? Muscles that move to enable you talk or swallow can be sensitive to tension, and exploring ways to minimise excess muscle tension may allow them to move more precisely and efficiently
Introducing muscle tension awareness exercises
Be aware of muscle tension in the shoulders, neck, jaw and face, (which are all involved in speaking and swallowing), and try to let the tension go. This allows the muscles to work as efficiently as possible, and can help to ‘damp down’ or minimise dystonic movements. Excess tension will accentuate dystonic movements.
Check where your shoulders are now; are they held tensely up and inwards, or can you let them go down to a lower relaxed position? Try to keep them ‘down’ rather than hunched up and tensely held. Explore shoulder positions, gently stretching pulling up and tight, and then letting this tension go relaxing down, repeating this movement so that it becomes familiar, with the feeling of releasing tension held in the shoulder area. When you are speaking or eating try to be aware of your posture and shoulder position, and keep as relaxed as possible with shoulders ‘down’. Check for neck tension by stretching and relaxing, looking left and right, up and down. Jaw tension may be released by making a yawning movement, or an over exaggerated chewing movement.
Take fuller deeper breaths to support the voice; by breathing deeply your voice will have more power without straining it. Try to breathe down into your belly (diaphragmatic breathing) rather than catching shallower breaths in the upper chest area. These shallow breaths tend to occur with tension, or the ‘flight and fight’ reaction from adrenalin, but can be become an unhelpful norm.
Try following muscle tension control exercises with some slow, deeper breathes when you are sitting quietly. When you are talking be aware of your posture and of trying to keep full diaphragmatic breathing going.
A speech and Language Therapist can show you further exercises to help you develop this approach
The controlled swallow
- Sit in an upright, relaxed position, letting gravity assist food and drink to go down
- Close your lips together as your swallow, assisting closure with a finger if this is not happening naturally (it is very difficult to swallow with your lips apart)
- Take a small breath in and hold it
- Tuck your chin slightly down towards your chest, as you make a firm effortful swallow
- After swallowing breathe out, following on with a second swallow in the same manner if it feels as if anything is still to be cleared from your throat
Explore different positions as you swallow, eg. does it feel like a stronger action if you turn your head to the left, or the right, or keeping it in the midline centrally, as you swallow.
Be mindful of the different textures of foods and drinks; naturally thick drinks or fluids such as milkshakes or soups are sometimes easier to control when you swallow as they go down through the throat slightly more slowly, allowing time for more control. If you frequently cough when swallowing or feel as if you may choke, thicker drinks may be helpful. Discuss using a thickening agent in your drinks which is available on prescription from our GP if you find thicker drinks more ‘secure’. Foods that are moist and smoother or ‘easy chew’ may be easier to control than dry or crumbly foods.
Coughing when eating or drinking is a sign that there is a greater risk of chest infections developing from foods or drinks entering the airways, and further advice should be sought. If you are losing weight because of swallowing difficulties it may be helpful to speak to a dietician, who can advise about this and other nutrition issues.
Whatever treatment you may have for dystonia, try to enhance the positive effects gained, and the length of the benefit of treatment by being mindful of keeping your mouth and throat functioning as well as you can and being as self-caring and healthy as possible. Change can be challenging, but try to be mindful of how interlinked speech and swallowing are with identity, and consider a ‘New You’.
Last reviewed January 2015
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 provided