{"id":4145,"date":"2017-07-26T11:52:25","date_gmt":"2017-07-26T15:52:25","guid":{"rendered":"http:\/\/ezermizion.org\/blog\/?p=4145"},"modified":"2017-07-28T10:48:54","modified_gmt":"2017-07-28T14:48:54","slug":"when-als-robs-its-victim-of-every-skill-he-had","status":"publish","type":"post","link":"https:\/\/ezermizion.org\/blog\/when-als-robs-its-victim-of-every-skill-he-had\/","title":{"rendered":"When ALS Robs Its Victim of Every Skill He Had"},"content":{"rendered":"
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Communicating via Ezer Mizion AAC device<\/figcaption><\/figure>\n

We tend to take our abilities for granted. Scratching a mosquito bite, calling out to a friend across the street, running for a bus, licking an ice cream cone\u2026these are all simple daily activities until one finds he no longer is capable of performing these previously effortless actions.<\/p>\n

Muscular movement<\/strong> is controlled by the neurological system<\/strong>. Motor neurons<\/strong> \u2018tell the muscles what to do\u2019. But if they don\u2019t? That is when we begin to realize just how complex our bodies are. A person finds he can no longer perform actions that have been part of his life since infancy.<\/p>\n

This is what happens in ALS<\/strong>. The motor neurons<\/strong> are gradually lost and the muscles<\/strong> they control become weak and then non-functional.\u00a0 ALS<\/strong> stands for amyotrophic<\/strong> (without nourishment to muscles) lateral<\/strong> (affecting the side of the spinal cord) sclerosis<\/strong> (the hardened nature of the spinal cord). Its onset is gradual and, at first, the symptoms are merely annoying: dropping things, tripping, perhaps slurred speech. Slowly, other muscles<\/strong> become involved including those that help us breathe. Up until five years ago, life expectancy was short with death often due to respiratory failure and lack of ability to ingest nutrition but due to recent technological advances in prolonging life, some ALS<\/strong> patients can now live for decades.<\/p>\n

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Reuven maintains his connection to his world using Ezer Mizion AAC equipment despite the ravages of ALS<\/figcaption><\/figure>\n

The question then arises regarding the quality of life of these patients. A typical end stage Amytrophic Lateral Sclerosis<\/strong> patient is not mobile at all. He lies in his bed or recliner, unable to lift his arm to reach for a tissue, unable to swallow food, unable to ask for a drink. He is completely dependent on his caretaker for every need. <\/p>\n

Yet his cognitive abilities<\/strong> remain intact or only mildly affected. He has an opinion on the president\u2019s foreign policy, he is excited and proud when his grandson is made valedictorian of his high school graduating class, he thinks his wife\u2019s new jacket is very becoming and he believes his brother should not accept the job offer in California. Feelings and thoughts boil inside of him and he can express none of it. Neither can he even express his request to turn the AC up or that he prefers to wear the blue shirt. This lack of ability to communicate<\/strong> can result in anxiety disorders and even mental illness.<\/a>
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Ezer Mizion AAC professionals demonstrating the possibilities of the Click2Speak at ISAAC International conference<\/figcaption><\/figure>\n

It is interesting to note that the eye muscles<\/strong> remain unaffected by ALS<\/strong> for a much longer period and it is this fact that has enabled the quality of life to be increased tremendously. Augmentative and Alternative Communication<\/strong> devices, when made available to the patient, can drastically improve his ability to communicate and restore his dignity as a functioning human being.<\/p>\n

The most simple of these devices is the phonetic board<\/strong> which enables the patient to choose \u00a0letters that comprise a message to the caregiver. A blink of the eye<\/strong> will select the correct letter. This method, however, is cumbersome and slow. A more autonomous device uses the pupil of\u00a0 the eye to control a computer. Using infrared, the light reflected from the retina through the pupil is sensed by a specially designed optical sensor. The machine tracks the eye\u2019s movements. In this way, the eye becomes a mouse with the sensor acting as cursor. A blink replaces the click. Using this method of gaze control<\/strong>, the patient can send an email and even go online or participate in social media. He can communicate with the world using only his eyes.<\/p>\n

Many devices are available and complex screening is needed in addition to training so that effective communication<\/strong> is in place when residual speech is no longer \u00a0\u00a0available to the patient. The journey will begin with the patient\u2019s speech becoming somewhat unintelligible, the tumult of crowds will negatively affect otherwise comprehensible speech and the speaking rate gradually decreases. It is during this period that an optimally effective device will be chosen by a team of professionals, the caretaker and patient. The main burden of determining the correct device lies in the hands of the professionals. \u00a0Several AAC<\/strong> strategies will be tried for periods to determine which works the best. The patient will then be trained so as to be ready when normal speech is no longer an option.<\/p>\n

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An Ezer Mizion AAC workshop for professionals in the field<\/figcaption><\/figure>\n

Often patients do not want to consider AAC<\/strong> devices until the need arises. However, procrastinating is not to be advised as deterioration can be rapid with no proper preparation time available. When the ALS<\/strong> patient is referred for AAC<\/strong> assessment when the speaking rate approaches 125 words per minute (the norm is 190 wpm), proper monitoring can take place in a timely manner. Of great importance is the need for the patient to be fitted with AAC<\/strong> technology that will enable transition as the disease progresses. Eye-gaze devices<\/strong> may be the preferred device even when the patient still has other means of communication<\/strong> since eye movements<\/strong> are the least tiring and the most likely to remain when other abilities are defunct<\/a>.
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Computer training prior to the onset of the disease or for the facilitator is not vital to successful usage of AAC<\/strong>. The facilitators are almost all family members with non-technical backgrounds who receive an average of two hours instruction which they find to be adequate for their needs. The patients, even those with mild cognitive deficiencies, are able to successfully use both high and low tech devices.
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Always in the forefront of innovative solutions for the problems faced by ALS patients and others who are unable to speak, Ezer Mizion has put much effort into development of hi-tech methods of communication<\/strong>. In 2016, Ezer Mizion was chosen by Google<\/strong> for its project with Click2Speak<\/strong>, an Israeli start-up, to develop an on-screen eye-tracking operated keyboard that will enable people with high cognitive function and limited mobility to communicate and control their environment.<\/p>\n

Google.org project head Brigitte Hoyer Gosselink wrote: \u201cAt Google.org, we support organizations that offer innovative solutions to complex challenges. We\u2019re thrilled to back Ezer Mizion as they help build a world that works for everyone.\u201d \u00a0\u00a0\u00a0 #GoogleImpactChallenge<\/strong><\/p>\n

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Gal writing Click2Speak program using eye movement<\/figcaption><\/figure>\n

The Click2Speak<\/strong> would facilitate communication with the best-in-class eye-tracking\/mouse replacement software. With an affordable, multi-lingual, and easy-to-use on-screen keyboard, users with impaired motor skills and high cognitive ability can communicate easily and benefit from add-on features that enable them to control their environment.<\/p>\n