Dystonia and dysphagia: that breath catching, coughing, spluttering, drowning thing!

Dystonia affects many parts of the body. It is a little known neurological movement disorder. Although chronic and non-life threatening, dystonia remains incurable at this time. Spasming vocal cord muscles is one form of dystonia called laryngeal dystonia, spasmodic dysphonia or spastic dysphonia. Another common form of dystonia is cervical dystonia, more commonly known as spasmodic torticollis. Most people favor botulinum toxin (botox) injections into affected muscles to treat dystonic symptoms. This treatment is used to soften the tell tale muscular spasms pulling muscles in different directions thus causing painfully twisted bodily shape. However, one of the nasty side effects of treatment for some types of dystonia is dysphagia, the inability to swallow safely.

Dysphagia symptoms may be monitored by speech pathologists. In some instances, modifying diet and thickening fluids provides good management of dysphagia. There are various types of drink thickener available for managing fluids. Pre-packaged thickened drinks (on this link scroll down pp 42-47 of 52) may offer some people a variety and change from daily routine of thickening all fluids.

Always seek professional opinion from your treating specialist who may refer you to an appropriate speech pathologist for follow up care and monitoring of your dysphagia. Some people who experience dysphagia as a complication following treatment find the symptoms are temporary and easily managed by learning what is referred to as a chin tuck when drinking. Your treating speech pathologist will be able to offer professional opinion on whether this method is appropriate for you. There are other aids that may also be useful for managing dysphagia, especially for those who have an underlying dysphagia condition that does not ease soon after treatment.

Cups designed for people with dysphagia may be recommended for you by your speech pathologist. One way drinking straws are a useful dysphagia aid for people of all ages. Again, your speech pathologist is the person to speak to about your personal needs in relation to using one of these especially designed drinking straws.

One-way drinking straws have a one-way valve allowing the straw to stay filled with fluid. Removal of the straw from the mouth or lips does not alter the level of fluid remaining in the straw. Inability to swallow safely while drinking may be harmful for people with dysphagia. This risk may be lessened or eliminated when using a one-way drinking straw. There are several options for purchasing one-way drinking straws. The highlighted words above link you to good examples of dysphagia aids.

If you would like to comment on what has or has not worked for you, please consider leaving your thoughts here so others may also learn from your experience. Personally, I use all the above mentioned aids to manage my chronic dysphagia which is always worse following treatment.

Sue Bayliss. Cairns, Australia.