Roger has been a member of the Oxford Dystonia UK Support Group for several years. Roger lives with mouth, tongue and jaw dystonia (oromandibular dystonia) and has compiled a list of practical tips gleaned from his own personal experience, medical articles, speech therapists and fellow members.

Oromandibular dystonia is characterised by continuous or intermittent muscle contractions which cause abnormal, often painful, repetitive movements in the mouth, tongue and/or jaw. The movements can happen at rest, but often happen when people are using their mouths e.g. talking or eating.

We would like to thank Roger for sharing his tips for those living with oromandibular dystonia.

Speaking: When speaking it can be difficult to produce enough volume. If there is background noise I find it is best not try too hard; you won’t be able to speak above it. Aim for a quieter environment or use a note pad and write messages.

Smart phones: It is worth investing in a smart phone as you can text rather than speak. Predictive text will reduce key stokes. You can also communicate with an app such as “Speech Assistant ACC” where a short message can be typed or a pre-made message can be accessed from a menu, for showing to the person you are with. These can be enlarged, which is handy if the reader does not have their spectacles on.

Body worn amplifiers: These will amplify whatever speech you have and save straining. These are now available quite cheaply with a headband and wireless microphone and can be purchased for £40-£50 through online retailers.

Food is not always easy to eat because it needs chewing. The state of most food can be altered so it is easier to eat e.g. cheddar cheese can be grated, potato can be mashed. Sometimes food can drop from the mouth, so it is worth having pocket tissues with you to wipe your mouth and fingers. A handy addition for home use is “Napkleen” disposable protector with pouch for guarding against food spillage.

If swallowing is difficult try tucking your chin in to your collar bone as this will stop food going down the wrong way. A “no speaking whilst eating” rule is a good way to stop spilling food and reduce the chance of choking. It is worth getting a pointed serrated knife to use daily for the easy cutting up of food.

Drink: Sometimes it is difficult to drink fluids because it causes coughing. There are thickeners to add to fluids. They come in powder form and they are sprinkled in a cup or glass and the fluid added. The fluid becomes thicker and therefore runs down the throat slower making swallowing more comfortable e.g. Resource Thicken Up Clear.

Dry mouth while sleeping: If you have a dry mouth a XyliMelts disc that sticks to the gum line and slowly dissolves will go some way to alleviating this.

Face and neck muscles: face muscles become lax over time due to dystonia. Try to identify specifically the muscles that have become lazy and aim to stimulate them. A fortnightly massage session by a private home masseuse can ease tight muscles in the jaw, mouth eyes and neck.
Make notes for doctors: Plan ahead for your medical appointment especially if your speech is not strong. The doctor or nurse may not be able to hear you clearly, so bring a short write up that they can read through at the start of the consultation. They can then ask you about specific points. Also, on another sheet, list the prescribed and non-prescribed medicines you take. Type out a summary of your condition, then put in bullet points with a two line summary any problems with speech, eating, swallowing, and movements.
Dystonia Wallet: Keep a dystonia wallet with a summary of your condition in your pocket at all times so that you can pull it out and show it. The writing on it needs to be brief i.e I have oromandibular dystonia. Voice problem.