What is ALS?

ALS, also known as Lou Gehrig's Disease, is a degenerative disease that affects nerve cells in a person's brain and spinal cord. The cells that are affected are called motor neurons, these control a person muscle movement throughout their body. Eventually these neurons die because they are no longer receiving any signal and this leads to the person becoming paralyzed. Though paralyzed the person's mind is left untouched by the disease. There is no cure for ALS and it's cause is still unknown. Once diagnosed the average life span of a patient is about 2 to 5 years, however 20% of patients live over five years, some even past 10.

Symptoms

Early symptoms may vary from one patient to another along with order of occurrence. Here are some of the primary symptoms seen in patients:

• weakness in arms or legs (may be more apparent on one side than another)
  
• weakness in muscles of the mouth
• thick or slurred speech
• loss of coordination
  
• difficulty in breathing, coughing, and swallowing
• aspiration (inhaling of food and liquids)
• twitching or cramping of muscles

The senses of sight, feeling, taste, smell, and hearing are unaffected because the motor neurons affected by this disease do not control these functions. The control of eye movement and bladder function are also often unaffected.

Living with ALS.....

Lou Gehrig

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1903-1941

Lou Gehrig was a Major League Baseball Player who was inducted into the Hall of Fame at 39 years of age. He earned his nickname "The Iron Horse" playing for the Yankees. He was diagnosed with ALS at 36 years old and died a year later.

How ALS affects communication.....

First of all, because ALS is a disease that affects the communication between a person's brain and motor neurons there is a loss of function in muscle movements. Speech is a combination of muscle contractions, respiration, and coordination, all of which are affected by ALS.
In the beginning speech may become slurred or 'thick' and it will be difficult for a person to project their voice. These are all initial symptoms of ALS for many people. Also, because respiration is affected a ventilator will be necessary for life support, this too affects speech. Overtime, as the disease progresses an overall paralysis will overtake the person's body, this includes the mechanisms used for communication, making speech impossible.
Because their is no cure or any real treatment for this disease the only thing to be done is to make the person as comfortable as possible.

Help through AAC......

AAC or Augmentative and alternative communication are techniques used to send messages from one person to another when speech is not possible, like when a person paralyzed due to ALS. We use some forms of AAC everyday, such as when we write someone a note or communicate through gestures. Simply put, AAC is communication without speech.
One high tech example of AAC is the use of electronic devices that speak for a person as a response to either entries on a keyboard, finger movements, puffs of air, or eye movements. One example of a person using this type of communication is Stephen Hawking, a famous physicist who has also been stricken with ALS.
AAC can also be as low tech as writing on a piece of paper or pointing to symbols on communication boards. I have posted a video below of a woman with ALS whose form of AAC is pointing a laser at a communication board. This is a very beneficial technique for a person with ALS because it needs very minimal movement.

References

• "AMYOTROPHIC LATERAL SCLEROSIS." Faqs. 2007. 12 June 2007 .
• Beukelman, David R., and Pat Mirenda. Augmentative and Alternative Communication: Management of Severe Communication Disorders in Children and Adults. 2nd ed. Paul H. Brookes Co., 1998.
• Blake, A, and C M. Shewan. "Augmentative and Alternative Communication." ASHA 33.5 (1991).
• "Introduction to Augmentative and Alternative Communication." ASHA. ASHA. 11 June 2007 .
• Kazandjian, Marta S. Communication and Swallowing Solutions for the ALS/MND Community- A CINI Manual. First Edition. Delmar 1997.
• "Use of Computers for Augmentative Alternative Communication." Ability Hub. 11 June 2007 .
• "What is ALS?" ALSA. 2004. ALS Association. 12 June 2007 .

Websites of Interest.....

www.alsa.org
www.als.net
www.als-mda.org
www.catfishchapter.org