Archive | December, 2013

How to Communicate With Someone Who Can’t Talk

4 Dec

I was fossicking around in my stroke-related files, looking for blog ideas, and I came across a document I put together several years ago after Chuck and I returned from an six-week, intensive speech therapy program. The subject is supportive communication and how to engage in it with someone who has aphasia, a condition that can result from a stroke or other head injury and results in a loss of language or the ability to speak normally.

These notes represent my attempt to find Chuck some way to communicate with others and they with him. His aphasia is so severe that he was unable to learn to speak again, and ultimately, he preferred to communicate in his own way and seems to be satisfied with it. I’m going to present the material as if I were instructing someone how to communicate with Chuck; but if you know someone who has aphasia, simply substitute that person’s name in place of Chuck’s.

How to Engage in Supportive Communication

1. Choose a time when Chuck is fresh and a place with few or no distractions. People who suffer from the affects of a stroke or head injury tire easily and are easily distracted by extraneous noise or activity.

2. Make sure Chuck has his dry-erase board and marker, picture dictionary, and photo albums.

The dry-erase board and marker were absolutely brilliant assistive tools and were suggested not by a speech therapist but by my niece Anna, who is a counselor who specializes in working with children. Chuck, being a skilled artist, is able to sketch representative, descriptive, often comical drawings to indicate ideas and needs.

Chuck was provided a picture dictionary while at the speech therapy “camp,” but found it troublesome to use. I think that for him, too much was going on. The pictures illustrated, for instance, a market full of people, food, items, and so forth on the page. To identify a single item—let’s say an apple to indicate he wanted one for a snack—took too much effort. Possibly, his defective vision was the problem; he has a right field cut, meaning he lacks vision on the inside of his left eye and the outside of his right eye, a result of the stroke.

Photo albums, either existing ones or new ones designed just for him, were a great success because he liked looking at them. Also, these were good for practicing names. Unfortunately, Chuck is not able to recall to whom I’m referring when I say the person’s name, even though he does recognize people. Some aphasia sufferers are able to improve, even learn to talk normally again; using photos and pictures, and even flashcards naming objects, are very helpful in helping them remember and relearn.

3. Start off asking him if he has a topic he would like to discuss, using one or all of the tools above.

4. When he points to or draws something, ask him to say it. Give him time to formulate the word, and ask if he would like you to write the word. If he continues to struggle after about 20 seconds, or if he asks for help, prompt him. If he cannot get it by himself, say the word and have him repeat it. Be patient. Give Chuck time to process, prepare, and articulate. This process will be fluid, so continue using the technique described as the conversation moves from topic to topic.

5. After Chuck has a turn, spend the same amount of time telling him about yourself or something of interest to you or how your day is going. Speak slowly, repeat frequently, and use the dry-erase board to write key words and illustrate concepts in order to increase his comprehension. Newspapers and magazines are a good source of topics. Be patient. Give him time to understand your message. Repeat the message as needed.

6. After about a half-hour, progress to an exercise or game.

Additional Information

If you are talking to Chuck and me, or if there is a group of people involved, be sure to look directly at Chuck during the course of the conversation. Unfortunately, I have noticed that since Chuck is unable to contribute to a conversation, others tend to ignore him. I’m not sure if they are uncomfortable or if they think he can’t comprehend what they’re saying. Possibly, he cannot; however, ignoring him is, frankly, rude. It also can aggravate the isolation and loneliness frequently experienced by people who have aphasia.

Chuck has expressive aphasia, the inability to access speech; and receptive aphasia, or difficulty understanding speech. He also has apraxia, or difficulty manipulating the musculature of the mouth. His intelligence is intact, so please remember and respect this when you communicate with him.

I’ve been told that a hallmark of aphasia can include a disinterest in the lives of others (as well as other personality changes). I’m not sure if this is organic/structural or the result of being the center of attention during a long period of rehab. Chuck definitely has become detached since his stroke, his emotional repertoire drastically reduced. Possibly, the antidepressant he’s taking contributes to, but I don’t believe is completely responsible for, the change. At least, unlike some stroke and head injury survivors, his basic mode is pleasant. I understand that some become mean or extremely depressed. Chuck usually is cheerful and easy to be around.

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Chuck’s Arm

3 Dec

Six years post stroke, Chuck’s arm remains paralyzed. Many stroke survivors do get function back, and it’s hard to predict who will or will not. I decided to act as though Chuck would and became very proactive, spending hours surfing the Net looking for alternative or supplemental treatments and assistive devices. I want to share my findings, in case they might help someone else in some way.

Clinical Trials
Clinical trials are free but experimental, designed to test new therapies or medical treatments. We ended up not being involved in any, but I spent many hours searching the lists. They are typically sponsored by the federal government and private hospitals, universities, and research centers. Here are some links to information:

http://www.stroke.org/site/PageServer?pagename=clinicaltrials
http://www.strokecenter.org/trials/
http://www.centerwatch.com/clinical-trials/listings/condition/142/stroke

Constraint Induced Therapy (CIT)
I read about CIT in The Brain That Changes Itself, by Norman Diodge. CIT involves restricting the use of the functional hand and thereby forcing the affected arm to work. The action of movement, even if a therapist manually produces it, causes neurons to fire. The arm communicates to the brain, “Hey, I’m still here! I need neurons.” Treatment takes place daily and lasts several hours. This kind of intensive therapy has been shown to be more effective than conventional therapy, which usually takes place three times a week. In order to qualify for this program, potential participants must have the ability to make a fist, which Chuck never was able to do.

The Mirror Box
The brain is the most complex organ of all the organs, containing the universe and the sum of all we know, as well as managing all our involuntary bodily functions and reflexes. This is why we don’t have to think about breathing. When brain cells are killed, as in a stroke, they don’t grow back. Luckily, the brain has plasticity; it can compensate for such loss with neurons, which can grow new pathways around the damaged area. However, when a limb, especially an arm, is paralyzed as a result of a stroke, it suffers “learned disuse,” and the brain has to be coaxed into giving back function to the arm. Sometimes, it has to be tricked. This is how the mirror box works.

The mirror box is constructed of slick fabric stretched around wires. On one side on the outside of the box is a mirror. The affected arm is placed inside the box, where it cannot be seen; the functional hand rests outside the box, facing the mirror. The patient moves the functional arm while looking at its reflection in the mirror, imagining he is moving the affected arm. The brain is thereby tricked into communicating with the arm, which is what has to happen in order for the arm to move. Best of all, they only cost $40.

The Biffy
In some cases, the caretaker of  the stroke survivor has to assist in cleaning after a bowel movement. In order to avoid this task and to spare Chuck’s dignity, I turned to the Internet, where I discovered a gadget that improved our quality of life to a great degree: the Biffy. It fits onto the toilet bowl and diverts water, by way of the intake valve, through a spout that sends a jet of water into the nether regions when the user pulls a lever. The cost was $100, well worth it. The company’s web site is located at https://www.biffy.com.

Knowledge is Power
I also found other sources of information on the Internet, such as free magazines Stroke Smart and The Stroke Connection and books like My Stroke of Insight; Head Cases: Brain Injury and Its Aftermath; and The Brain That Changes Itself. I read as much as I could, on line and off, about stroke.

Educating myself was one of the best ways I was able to help Chuck. I gathered a mass of information—some helpful, some not—much of which no doctor or therapist ever told me about. In addition, doing the work helped me feel more in control of a virtually uncontrollable situation. Fact-finding became a form of free therapy, which kept me from feeling helpless and filled up many hours that otherwise might have been spent despairing.

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