What are the causes? Expand Dystonia is caused by incorrect signals from the brain to the affected body part but the causes for this are not yet fully understood. However, many cases of myoclonus dystonia are inherited, caused by mutations in a specific gene. The fault is found on the DYT11 gene (or SGCE gene). There is a 50% chance that a child will inherit the mutation if one parent has it. But inheriting the gene does not necessarily mean they will develop myoclonus dystonia. ‘Maternal imprinting’ means the disorder may be passed down through families but only show in a grandmother and grandchildren. This happens when the gene is passed down by the mother and ‘switched off’ for her children. It is then ‘switched back on’ again when passed on by any male children to their offspring. E.g. There is a 50% chance that a son inherits the gene and if he does so then, for each of his children, a 50% chance that he will pass the gene on to them. There are also a number of families with myoclonus dystonia but no DYT11 mutation, suggesting that there may be other genes that can cause this disorder and that more research needs to be done. Sometimes a single case of myoclonus appears although no-one else in the family is affected. This is called a sporadic case. As sporadic cases of myoclonus dystonia have similar symptoms to familial cases it is possible that, even if the DYT11 mutation is not present, many of these will also have a genetic cause that has not yet been identified.
What are the common treatments? Expand Botulinum toxin injections Oral medication Physiotherapy Self-help techniques Ptosis props (eye crutches) Artificial eye drops
What are the common treatments? Expand Botulinum toxin injections Oral medication While there are currently no complementary therapies recommended for dystonia by the NHS, the complementary therapies listed here have sometimes been mentioned by members with focal hand dystonia as being helpful. Sensory re-education Behavioral therapy techniques Complementary therapies such as Alexander technique or Feldenkries therapy
What are the most common treatments? Expand Botulinum toxin injections Oral medication Physiotherapy Self-help techniques
What are the common treatments? Expand Botulinum toxin injections Oral medication Deep brain stimulation
What are the common treatments? Expand Oral medication (Levodopa) Physiotherapy Full physical functionality can typically be restored through the use of levodopa (Sinemet) for treatment. Physical therapy may be helpful if problems with walking have been identified or if shortening of the muscles occurred whilst dopa-responsive dystonia was uncontrolled.
What are the causes? Expand Dystonia is caused by incorrect signals from the brain to the affected body part.
How will it affect my life? Expand You may need to find ways to adapt and might have to learn new ways to complete everyday tasks. However, it is possible to live well with the condition and Dystonia UK is here to support you through all stages including initial onset, diagnosis, finding treatment and beyond. You may find these sensory tricks helpful including: running placing hands in back pockets tucking hands into the back waistband
How will it affect my life? Expand You may need to find ways to adapt and might have to learn new ways to complete everyday tasks. However, it is possible to live well with the condition and Dystonia UK is here to support you through all stages including initial onset, diagnosis, finding treatment and beyond. Some people find their symptoms may respond to sensory tricks.
How will it affect my life? Expand You may need to find ways to adapt and might have to learn new ways to complete everyday tasks. However, it is possible to live well with the condition and Dystonia UK is here to support you through all stages including initial onset, diagnosis, finding treatment and beyond. During an attack, people with paroxysmal dystonia do not lose consciousness, and are completely aware of their surroundings. There is no effect on the mind or the senses. They are not the same as epilepsy, and therefore do not necessarily disqualify one from driving (though advice should be sought from the driving licence authority [DVLA].)
How will it affect my life? Expand You may need to find ways to adapt and might have to learn new ways to complete everyday tasks. However, it is possible to live well with the condition and Dystonia UK is here to support you through all stages including initial onset, diagnosis, finding treatment and beyond.
How does Give as you Live Online make money? Expand Give as you Live Online donate 50% of the commission they receive, with the other 50% used to fund the on-going development of Give as you Live Online, which is free to all charities and members. All donation amounts they display represent the amount the charity will receive - a 5% donation means a 5% donation!
How will it affect my life? Expand You may need to find ways to adapt and might have to learn new ways to complete everyday tasks. However, it is possible to live well with the condition and Dystonia UK is here to support you through all stages including initial onset, diagnosis, finding treatment and beyond. You may find these coping techniques helpful: Vocal exercise (humming, speaking slowly, reciting nursery rhymes). Volume control (talking softly or loudly). Relaxation techniques. Breathing deeper breaths, exhaling before speaking, not holding onto the breath. Environmental control (talking one-on-one, not being interrupted). Using voice early in the morning. Sensory gestures (covering eyes, pinching nose). Physical exercise (need to check exercise is appropriate with doctor before trying). Mental aspects ("not thinking about it", keeping a good attitude). Physical rest, vocal rest, warm liquids and laughing.
How will it affect my life? Expand You may need to find ways to adapt and might have to learn new ways to complete everyday tasks. However, it is possible to live well with the condition and Dystonia UK is here to support you through all stages including initial onset, diagnosis, finding treatment and beyond. You may find these coping techniques helpful: Applying light pressure to points on your neck or face, such as the chin, back of the head, neck, cheek or upper face. The touch is usually (but not always) more effective on the side of the head with the dystonia. Reclining or sitting with head support.
How will it affect my life? Expand You may need to find ways to adapt and might have to learn new ways to complete everyday tasks. However, it is possible to live well with the condition and Dystonia UK is here to support you through all stages including initial onset, diagnosis, finding treatment and beyond. As this form of dystonia may be genetic, some people find it helpful to speak to a genetic counsellor, regarding the genetic issues, and what this may mean for you and your family. Some find the jerking movements may improve when alcohol is taken but this does increase the risk of alcohol abuse and consequent resulting long-term health effects.
How will it affect my life? Expand You may need to find ways to adapt and might have to learn new ways to complete everyday tasks. However, it is possible to live well with the condition and Dystonia UK is here to support you through all stages including initial onset, diagnosis, finding treatment and beyond. You may find these coping techniques helpful: Press your fingers against the temples, end of nose or other parts of your face – you need to find the spot that suits you Use distraction techniques: taking a very deep breath, chewing gum, whistling, humming, sucking on a straw, singing, reading aloud or pinching yourself Use relaxation techniques in a dark place Put your head back, close your eyes or look down rather than trying to look ahead Block out bright light by wearing a hat or visor. Wear wraparound sunglasses outdoors and tinted lenses indoors.
How will it affect my life? Expand You may need to find ways to adapt and might have to learn new ways to complete everyday tasks. However, it is possible to live well with the condition and Dystonia UK is here to support you through all stages including initial onset, diagnosis, finding treatment and beyond. You may find these coping techniques helpful: Relaxing attitude to handwriting Some musician’s find sensory tricks such as changing the position of keys on a wind instrument, using the opposite hand for bowing on the violin or playing an instrument while wearing a latex glove can be helpful.
How will it affect my life? Expand You may need to find ways to adapt and might have to learn new ways to complete everyday tasks. However, it is possible to live well with the condition and Dystonia UK is here to support you through all stages including initial onset, diagnosis, finding treatment and beyond. You may find these coping techniques helpful: Sensory tricks, such as chewing gum.
How will it affect my life? Expand You may need to find ways to adapt and might have to learn new ways to complete everyday tasks. However, it is possible to live well with the condition and Dystonia UK is here to support you through all stages including initial onset, diagnosis, finding treatment and beyond. You may find these coping techniques helpful: Some people find the symptoms of lower limb dystonia may occur while walking forwards but improve or disappear when walking backwards. Some individuals may be able to temporarily lessen symptoms with a ‘sensory trick’ to another part of the body, such as gently touching the face or head.
How will it affect my life? Expand You may need to find ways to adapt and might have to learn new ways to complete everyday tasks. However, it is possible to live well with the condition and Dystonia UK is here to support you through all stages including initial onset, diagnosis, finding treatment and beyond.
How will it affect my life? Expand You may need to find ways to adapt and might have to learn new ways to complete everyday tasks. However, it is possible to live well with the condition and Dystonia UK is here to support you through all stages including initial onset, diagnosis, finding treatment and beyond. As this form of dystonia may be genetic, some people find it helpful to speak to a genetic counsellor, regarding the genetic issues, and what this may mean for you and your family.
What are the common treatments? Expand Botulinum toxin injections Oral medication Physiotherapy Self-help techniques Ptosis props (eye crutches)