MANAGING SYMPTOMS( continued)
or jejunostomy tube( J-tube), or endoscopically with a percutaneous endoscopic gastrostomy( PEG) or percutaneous endoscopic jejunostomy( PEJ).
PEGs are the most commonly used type of feeding tube for people with neurological disorders. They are not painful and are not easily visible when wearing normal clothes. When not in use, they are capped and can simply be taped or bound to the belly to prevent moving around under clothing.
What do I need to consider as I make a decision about a feeding tube?
A common decision faced while living with PSP, CBD, or MSA is whether to have a feeding tube placed. This discussion should take place sooner rather than later and be revisited as needed. Prior to determining that a feeding tube is the right course of action, the facts need to be reviewed. Discussions should be initiated prior to a health crisis. The person with PSP, CBD, or MSA and their family should agree in advance with the doctor about what is hoped to be accomplished. Decisions must revolve around the assessment of burdens and benefits. This requires value judgments and consideration of quality of life.
Speech and Communication Difficulties Adapting to Communication Difficulties
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Problems with communication tend to be present and progressive in all individuals with PSP, CBD, and MSA. Dysarthria is the term used for speech disorders that result when the muscles cannot move with the correct range of movement, strength, speed, force, or coordination, causing slurred imprecise speech, or slowed or rapid speech. Dysphonia is the term used for disorders of voice that affect the sound that comes from the voice box( larynx). Common examples of dysphonia are hoarseness, low volume, strangulated speech, whispery speech, and vocal strain. To address the changes in communication, some comparisons with Parkinson’ s disease may provide insight.
Tips to Enhance Communication
Most people with communication difficulties prefer to attempt verbal communication for as long as possible, even when their speech becomes hard to understand. The following strategies are designed for the listener and to enhance the communication environment:
• Eliminate distractions and reduce background noise( TV, radio, newspaper, large groups of people, an open door, etc.)
• The listener should face the speaker and be an active listener.
• Keep questions and comments brief.
• Ask one question at a time, allowing time for a response.
• Allow enough time for the person to convey their message.
• Stick with one topic at a time.
• Ask for the topic of the message so that you can use context cues to help with interpretation.
• Ask targeted“ yes / no” format questions.
• Pay attention to gestures and facial expressions.
• Ask for clarification when you do not understand, or repeat what you think was said in the form of a question, such as,“ Did you say …?”
• Keep to familiar topics.
• Give the person choices to ease decision-making, such as,“ Do you want coffee or tea?” rather than,“ What do you want to drink?”
• Be patient.