ALSA communication battle A look at the communication journey ALS brings people through. And how we can fight back. Presentation by: Jasmine DeLude CCV summer semester 2012 Interpersonal and small group communication
About ALS(Lou Gehrig’s Disease) Lou Gehrig 6/19/1903 ~ 6/2/1941
ALS (amyotrophic lateral sclerosis) ALS (amyotrophic lateral sclerosis) more commonly known as Lou Gehrigs disease was first noticed in 1869 however no much was known about the disease until famous baseball player Lou Gehrig was diagnosed in 1939. 143 years later still there is no cure, no known cause, and almost no hope for those who become ill. “ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually lead to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.” (1)
Things you should know ALS IS NOT CONTAGIOUS “Approximately 5,600 people in the U.S. are diagnosed with ALS each year. The incidence of ALS is two per 100,000 people, and it is estimated that as many as 30,000 Americans may have the disease at any given time” (1) ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries. ALS can strike anyone. “The onset of ALS is insidious with muscle weakness or stiffness as early symptoms. Progression of weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control vital functions such as speech, swallowing and later breathing generally follows” (1)
Loss of muscle means… Because ALS kills the motor neurons musical control and movement is lost (especially voluntary muscle movements) Most people take these voluntary movements for granted. Things like answering the phone, scratching a bug bite, eating, talking, waving hello to someone, hugging our children, kissing, brushing our teeth, and in the late stages even breathing. ALS is a disease that strips people of all communication. It takes away their hand movements, and eventually their speech, it takes away their ability to nod their heads, and sometimes the ability to smile or frown. However ALS does not effect a persons mind. Therefore they are still fully aware of what is going on around them, they comprehend everything the exact same, they feel the same emotions, mentally the ALS patient is untouched. Making this lack of communication very frustrating.
Imagine never being able to say howyou feel again.Currently technology advances are being made to help withALS communication. These devices are not only for peoplewith ALS but for anyone with a disability striping them oftheir communication abilities. The devices in thispresentation have been used and proven helpful by peoplewith ALS.
There are so many options to help youcommunicate Assuming that someone is diagnosed with ALS or other illness which takes away their natural ability to communicate Here is a look at some of the communication options that are currently available to help. It’s best to find a tool that feels comfortable as soon as possible, as speech weakens it will become harder to find a way of communication that will be successful. Many people have to try multiple things before they find one that works for them. So my best advice is to start looking early. Also some of these devices are very costly, so it’s important to knowwhat your insurance will cover, and to seek out other financial resourcesearly on. It really is heartbreaking to think some people lose all ability to communicate simply because they can’t pay for it.
Low Tech OptionsThe following methods of communication are more affordable thanhigh tech options, They are good for people who don’t know how, ordon’t want to learn how to use computers. These methods are alsogood for traveling because they are easy to carry. However thesemethods take a lot of time, and are more hands on. It’s important toremember Practice makes perfect.
Speakbook “Speakbook only requires eye movement. Each Color has a corresponding line.” (5) You write on the line specific things like Soda, Juice, Water. You hold the book at eye level, so you can see the person’s eyes who is trying to communicate. The person looks to the color they want. Blue for example, and then looks to a corner of the book. You follow their eyes to that corner and color they specified to see what they want. For example Blue bottom left = drinks. The person is saying they want a drink. More options would be shown on the drink page. The Speakbook has a free version you can download and print with PDF. Best if it’s laminated. You just fill in the blanks, It requires a lot of hands on work, and eye movement. Wouldn’t work for having a conversation, but seems to work good for basic requests such as choosing a type of drink, or food, or where to go. Basic daily needs could be addressed with this method.
The Letter Board “The letter board focuses on words which are most commonly used in the English language”. (6) Similar to the Speakbook the person would look to the first letter of the word they were thinking, and then the other person would have to guess the word. For example D is for Drink. The person trying to communicate would blink once for yes, or not blink at all for no. This method takes a lot of practice and patience, it works best if trying to communicate with someone you know, like a parent or child.
Using Tablets, and Smartphones. (There’s an app for that) There are a few different apps for touch screens which will talk for the person trying to communicate. My favorite called “mytalktools” (4) and it’s used for apple or droid phones. The mytalktools app shows a screen of common images, when the image is touched the phone says out loud what the image is. You can customize which images are shown on the screen. This app is great for choosing meals, places to go, or other common every day activities.
What if I can’t touch a touchscreen?As stated earlier ALS attacks the nerves andmuscles used for voluntary movement. Often timeswhen the hands atrophy they will curl or clench upinto fists making it impossible to touch atouchscreen with a finger. No worries!! There arealso devices made for touching touchscreens! Thesedevices use your mouth, chin, nose, or forehead.
Mouth Sticks Use a touchscreen with your mouth One end goes in your mouth, the other end touches the screen for you. This method can cause tired jaws, and drooling. But it’s quite effective in the early stages if ALS, again Practice makes perfect.
High Tech OptionsFor people who love to use computers, or want to learnthese options are making more and more advances everyday. These options allow people to use their real voices,and carry on conversations, rather than just saying asimple word or phrase. Granted these options are moreexpensive there are programs to help people pay for them,and you definatly get what you pay for.
Voice Banking “Voice banking is the process of recording your voice for possible future use on a communication device”(2)There are a couple different methods and programs to voice bank.You can download computer software which will have you speak aseries of words and phrases, and then the computer records themand saves them for future use. Any words not recorded would bespoken with a genaric pre-recorded voice.This program is wonderful because it allows users to speak in theirown voice as long as possible, making it less dramatic and morecomfortable for families and friends. No one ever has to fear notremembering their loved ones voice.
TOBII PCEYE This device can be used with most personal computers and allows access to all computer programs. One only needs the use of their eyes to access the world. Users can play games, have Facebook accounts, check e-mails, and even write books. “Tobii PCEye, is a perfect eye control unit, for users with higher cognitive abilities wanting access to regular computer programs with eye control. It was developed primarily for individuals with impaired motor skills or those needing an alternative method like eye control for controlling a mouse.” (8)“Precise eye control for allThe Tobii PCEye eye control unit flawlessly converts eye movement to a mouse cursor on yourcomputer, attaches to many retail monitors and takes only seconds to complete the one-timecalibration. With one of the largest track boxes on the market and award winning eye trackingtechnology, the Tobii PCEye can be used by over 95% of users to eye control, regardless of eyecolor, glasses, contact lenses, lighting conditions or head movements.A higher level of computer performanceThe Tobii PCEye eye control device won’t slow down your computer, or restrict you from stayingup to date with technology. A powerful, built-in processor ensures that your computer will run likenormal during an eye control (tracking) session. And if you want to switch computers or need tochange locations, the low weight, and robust design as well as the included carrying case of theeye control device makes travelling simple.”
TOBII PCEYEThis is the Tobii and itconnects to your own PCas seen above.This tiny little box readsyour eye movements.
The Future of CommunicationThe BrainGate is a future device currently in the making.Though this device is not out yet, when released it will bethe new face of communication. Allowing people tocommunicate with nothing but thought. It is the closestthing to natural communication ever thought of.
The BrainGate™“The goals of the BrainGate™ Company is to create technologythat will allow severely disabled individuals—including those withtraumatic spinal cord injury and loss of limbs—to communicateand control common every-day functions literally throughthought.” (3)This device is so advanced they are currently working on limbcontrol, and robotics. The thought is that eventually they cancreate a device allowing people to control their musclemovements again just by thinking it.The braingate is a type of prosthetic which would be implantedinto the patient, then allowing them full access to the future. It’salmost like having a human robot hybrid. It will be a while beforeany products are released as this most advanced research comeswith it’s own risks and problems. They are trying to work out allof the kinks before releasing a product line. Imagine if ALScouldn’t control people.
Why do I care about ALS? I’ve been asked many times why I do research on ALS, and why I care. So I’d like to introduce you to my mother. My mom’s name is Lori DeLude she was born April 5th 1960 and she passed away may 13th 2009. ALS is the disease that took her life. In the case of my mom we caught the disease too late. She only lived for one year after being diagnosed, we couldn’t afford the high technology options but we tried the speakbook and the letterboard, we tried writing things with a pad and paper. Unfortunately the loss of muscle took that ability away as well. In many cases of ALS like the case of my mom the disease moves very fast, One day someone can be talking clearly and the next day they might not be able to open their mouth.
My MomThis is my mom Lori in 1986I was one year old. You can see she hasfull function of her head, her smile, andher hands. She is able to hold a babyon her lap.I was a happy baby.
My MomThis is my mom in the year 2000.We were at Walt Disney world. She wasable to walk, talk, run, and ride ridesjust like any other “normal” person.Als literally sneaks up on people. Therewas never even a clue that she wouldever be sick.
My momThis is my mom in 2009, earlier thatyear she got diagnosed with ALS It allstarted with a muscle weakness in herarm. My mom was an LNA, and shethought she had pulled a muscle.Testing for ALS sometimes takesmonths, by the time we found out whatwas wrong we had almost no time tohelp her. Though there is no cure forALS knowing earlier would have helpedmake the battle easier.In this picture you can see her shoulderand arm’s have thinned out, her lips aresealed closed as she is trying tosmile, her hands are tightened up, shehad a hard time getting themcomfortable as they atrophied.
Eventually my mom lost full function of her body, she hadto use a feeding tube, and a wheel chair. I moved in withher to take care of her. Taking care of someone with ALSis a full time job. It includes feeding, cleaning the feedingtube, bathing, helping them in the bathroom, brushingtheir hair and teeth, administering medication, cleaningthe house, putting them to bed, and most importantlyconstant communication. If you don’t understandsomeone with ALS it could be a life or death situation.They might not be able to breath, or might be choking.The caretaker has to know how to communicate with thepatient. This is why teaching about different ALS communication options is so important to me.
Must See VideosIncase the videos on the presentation won’t load correctly. About the Tobii PCEYE http://www.youtube.com/watch?feature=player_embedd ed&v=euBDysPgRPQ The Tobii in action (an interview with Thomas Ohlson) http://www.mtv.com/videos/news/664058/thomas- ohlson-tells-the-story-about-his-battle-with-als.jhtml
Works Cited 1) ALS Association. "About ALS." ALS Association. ALS Association, 2010. Web. 16 July 2012. <http://www.alsa.org/>. 2) "Augmentative and Alternative Communication (AAC) Resources." Voice Banking. The ALS Association, n.d. Web. 16 July 2012. <http://webor.alsa.org/site/PageNavigator/OR_8a_AAC_resources.html?printer_friendly=1>. 3) "Braingate." Braingate. Braingate Company, 2009. Web. 15 July 2012. <http://www.braingate.com/company.html>. 4) Farr, Sandra M. "Accessibility, Technology and Reactions to the "Touch Barrier"" Web log post. Making Connections. Making Connections, 17 Dec. 2010. Web. 16 July 2012. <http://www.making-connections.org/2010/12/accessibility-technology-and- reactions.html#!/2010/12/accessibility-technology-and-reactions.html>. 5) Joyce, Patrick. "SpeakBook | Nonprofit Communication Tools." SpeakBook | Nonprofit Communication Tools. N.p., 2011. Web. 15 July 2012. <http://www.speakbook.org/>. 6) Maxfield, Clive. ""Letter Board" for the Severely Disabled." Web log post. Programmable Logic DesignLine Blog. EE Times, 1 May 2006. Web. 15 July 2012. <http://www.eetimes.com/electronics-blogs/programmable-logic-designline-blog/4031418/- Letter-Board-for-the-severely-disabled>. 7) Thomas Ohlson Tells The Story About His Battle With ALS. Prod. MTV. Perf. Thomas Ohlson. MTV, 2011. Interview. 8) Tobii Technology. "Tobii PCEye - Eye Control on Your PC with Your Eyes." Tobii Celebrating Communication. Tobii Technology, 2011. Web. 15 July 2012. <http://www.tobii.com/pceye>.