Narcolepsy

Overview

Narcolepsy is a chronic sleep disorder with no known cause. The main characteristic of narcolepsy is excessive and overwhelming daytime sleepiness, even after adequate nighttime sleep. A person with narcolepsy is likely to become drowsy or to fall asleep, often at inappropriate times and places. Daytime sleep attacks may occur with or without warning and are usually irresistible. These attacks can occur repeatedly in a single day. Drowsiness may persist for prolonged periods of time. In addition, nighttime sleep may be fragmented with frequent wakenings. People diagnosed with narcolepsy may also experience:

Sudden episodes of loss of muscle function, ranging from slight weakness (such as limpness at the neck or knees, sagging facial muscles, or inability to speak clearly) to complete body collapse. Attacks may be triggered by sudden emotional reactions such as laughter, anger, or fear and may last from a few seconds to several minutes. The person remains conscious throughout the episode;
Temporary inability to talk or move when falling asleep or waking up. It may last a few seconds to minutes;
Vivid, often frightening, dream-like experiences that occur while dozing or falling asleep.

Daytime sleepiness, sleep paralysis, and hypnagogic hallucinations can also occur in people who do not have narcolepsy.

Narcolepsy is a lifelong condition with no known cure. Medication can control some of the symptoms for some people, but usually it is a condition that needs to be managed by changes in lifestyle and behaviours.

The effects of the condition

Learning may be affected as the ability to read, study and concentrate is periodically (and in some cases continuously) impaired;
Sleepiness can be misinterpreted as disinterest, lack of dedication, rejection or laziness;
Sleepiness can also be misinterpreted as an indication that the person is living a lifestyle that is not commensurate with work or study – i.e. staying up late at night etc;
Self esteem and confidence can be affected;
Narcolepsy can seriously affect a person’s social life and careers. People with Narcolepsy will often attempt to avoid trigger behaviours which can include, laughter, excitement, stress and self assertion. This self-restraint can impact on the ability to connect and interact with other people;
Difficulty to commit to deadlines.

Appropriate Adjustments in the Tertiary Education Environment

As each student will have different needs, it is important to negotiate these needs on an individual basis. The following is a list of adjustments that may assist the student:

General

Make book and reading lists available prior to the commencement of lectures (preferably at least two weeks prior to the commencement of the semester);
Provide students with chapter outlines or study guides. These should also be available at least two weeks prior to the commencement of semester;
Where possible, provide any written work in electronic format - either in an accessible format on the web, or on disk. This allows the student to reproduce the material in alternative formats (i.e., large print, alternative colour print and background, via screen readers).

Lecture / class room adjustments

Have print copies of overheads available for students prior to the commencement of lectures;
Repeat and rephrase important points;
Speak clearly and face the students whenever talking;
Always verbalise any points that are either written on the board or put up on overheads;
Clearly label any equipment used in lab or practical classes;
Use a microphone whenever the equipment is provided;
Tape lectures and place in the library so students are able to copy;
Use simple language and stay on topic;
Whenever new processes or procedures are introduced, or whenever directions are given, ensure that stages or sequences are made clear and are explained verbally as well as in written format;
Present information on a range of formats - handouts, worksheets, overheads, videos, using diagrams, lists, flow charts, etc;
Have regular breaks in long lectures - this will assist to prevent 'information overload';
Avoid putting the student on the spot by targeting them for questions or reading aloud in class - unless the student has indicated their willingness to participate (i.e. raised hand etc);
Be flexible about what constitutes 'participation' in tutorials. High anxiety levels of the student may mean that they avoid participating in discussions during tutorials and may trigger seizures;
Supply comprehensive lecture notes;
At the beginning of each lecture, outline the key points that will be raised in the lecture reintegrate these and at the conclusion of the lecture;
Try and make sure there is good lighting in the lecture theatre/class room. If possible adjust blinds to ensure there is no glare on the board or where overheads are being projected.

Assignments

Be flexible with deadlines and extensions for students;
Provide clear feed back to the student both verbally and in writing;
Consider negotiation an individual learning program for students with narcolepsy. This can include:
- Flexible deadlines for assignments to take into account the effects of their disability and the requirements of other subjects;
- Alternative marking arrangements such as allowing the student to hand in a 'draft' for comment prior to submitting their final paper;
- Consider setting alternative assignments (of commensurate level) where a student can work on a few selected texts rather than having to read copious amounts of text.

Examinations

Allow extra time in formal exams, departmental exams and class tests;
Allow the student to complete oral exams;
Allow the student to use a PC;
Allow the student to use a PC with software that accommodates the needs of students with learning disabilities e.g., Voice Activated Software;
The student may require natural or non fluorescent lighting;
The student may require a reader and/or a scribe (amanuenses);
The student may need a private room;
Allow the student to bring food, drink, or medication if required;
Allow time for rest breaks.

* Remember: Alternative Adjustments, is about providing the opportunity for equality, not the attainment of a particular outcome. A student with a disability is still required to present work that is of a recognised standard. Providing flexibility in the process of learning does not mean that the subject standards are lowered.

Narcolepsy

Disability Support Services

Narcolepsy

Overview

The effects of the condition

Appropriate Adjustments in the Tertiary Education Environment

General

Lecture / class room adjustments

Assignments

Examinations

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