Staying yourself despite ALS

Many perceive our personalities as our thoughts and feelings expressed by our actions, gestures, creative endeavors, and our words. People living with amyotrophic lateral sclerosis (ALS) face a frustrating and even anguishing challenge: Their mental faculties are often untouched by the disease even as they lose their physical ability to express themselves.

Whether we're joking with friends, expressing affection, or speaking before the public, our voices let our personalities shine through. ALS can rob patients of their voices. Weakened muscles in the mouth and throat produce slurred speech. Muscles that support breathing weaken, reducing volume. But, voice amplification systems and speech synthesizers make it possible for ALS patients with weakened voices to say their piece.

The synthesized voices used by Augmentative and Alternative Communication (AAC) devices, though, may feel limiting regarding output speed, pacing, volume, and tone, and make it difficult to convey emotions and personality.

Preserving your acoustical fingerprint

Preserving patients' voices can help them maintain their unique personalities despite the progression of the disease. Voice and message banking, if completed early enough, can help. A patient can record common phrases for later use in a speech-generating device. In another process the patient reads a series of words to produce a wide range of sounds to be used to generate synthetic speech in the patient's own voice.

Recording thoughts and feelings

With the help of AAC devices, writing of all kinds (autobiographies, business documents, novels, and educational guides) can be realized by anyone living with ALS.

This extends to the internet. ALS patients can create websites to teach and inspire others thanks to voice activation programs, voice recognition software, and eye-tracking technology. Patients can stay involved by educating others in their fields of interest, or by providing insight into the experience of living with ALS.

Whatever your purpose, technology offers a way to communicate your passions to a wide audience

Artistic expression

An essential part of being human is the desire and ability to create. Fortunately, in most cases a combination of alternative methods and technology can help ALS patients express themselves creatively.

For instance, patients who have lost the ability to use their arms and hands can create works of art by using their feet to paint onto a canvas or to control a touchscreen. Some artists living with ALS find this alternative method of expression helps them regain a sense of control.

Even in cases of paralysis of all limbs, the use of eye-tracking technology allows the creative impulse to be acted on. Patients can continue drawing on a computer using only the movement of their eyes.

Technology offers ALS patients a way forward in continued self-expression and creativity. Passions and hobbies don't have to take a backseat to your disability, but can flourish and provide encouragement during difficult times.

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