Archive | December, 2013

How to Communicate With Someone Who Has No Language

4 Dec

When I tell people that Chuck’s stroke left him without language, the first question is usually, “Can he read?” Is reading language? Yes? Then the answer is, “No, he cannot read. Or write, or speak.” Furthermore, his comprehension of spoken language is poor.

Chuck has aphasia, a condition that can result from a stroke or other head injury and results in a loss of language; and apraxia, the ability to manipulate the musculature of the mouth in order to produce sound. (Which is beside the point in his case, sense he has no verbal capacity.) So how do we communicate? One way is through supportive communication. I’ll explain it as it was to me, then reveal which techniques worked best for us; you may find some of these suggestions helpful.

GarrenFigure8

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, photos and photo albums.

  • Dry-erase and marker. 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 and an artist. Chuck, himself a skilled artist, is able to sketch representative, descriptive, often comical drawings to indicate ideas and needs.
  • Picture dictionary. Chuck was provided a picture dictionary while at the speech therapy “camp,” but found it troublesome to use. Too much was going on in the illustrations, say a market full of people, food, items and activities. To identify a single item—let’s say an apple (to indicate he wanted one for a snack)—took too much effort. His vision deficit probably contributed: 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.
  • Photos and photo albums. Photos and albums worked well for Chuck because he recognized himself and others and had positive associations and memories connected to the people and events in the pictures. They also prompted name retrieval. Part of Chuck’s cognitive deficits include not being able to visualize whom I’m referring when I say the person’s name; he has to actually see the person or a photo thereof.

3. Ask 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. 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.

Other Things to Remember

If you are talking to Chuck, look directly at him. I have noticed that since Chuck is unable to contribute to a conversation, people tend to ignore him because, I suppose, he cannot contribute. Ignoring him is not only rude but also can intensify the isolation and loneliness frequently experienced by people who have aphasia.

Keep it short and simple. Chuck gets frustrated when someone talks to him and he doesn’t understand, or when he tries to express an idea but cannot make himself understood. Yes/no questions are best. Don’t talk too much; it’s okay to just share space 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. Luckily, he is usually in a pleasant mood, which is not always the case with stroke survivors.

I hope someone finds these ideas helpful and applicable to their particular situation. If you would like to read more about our experience with stroke, recovery and caretaking, please read my book, Stroke Happens.

Best, Laura Ann Garren

 

Resources for the Stroke Survivor/Caretaker

3 Dec

Many stroke survivors do get full function back. I decided to assume that Chuck would, and I became prolifically proactive, spending hours surfing the Net looking for alternative or supplemental treatments and assistive devices. I am sharing my findings in case they might help someone else.

Clinical Trials
Clinical trials are free but experimental, designed to test new therapies or medical treatments. We ended up not pursuing this route, but here are some sources, typically sponsored by the federal government and private hospitals, universities, and research centers.

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; which 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 the help of 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, much less expensive than a real bidet.

Rest   With Chuck After Stroke
A person who has suffered a stroke needs lots of rest. Chuck slept 12 hours a night and took naps during the day for the first year post-stroke. The brain needs that time to heal, so let a stroke survivor sleep as much as possible.

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. As I could find very few books from the point of view of the caretaker, I wrote one myself: Stroke Happens, available on Amazon.

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 empowered in a virtually uncontrollable situation. Fact-finding became a form of free therapy, which kept me from feeling helpless and filled many hours that otherwise might have been spent despairing.

Best, Laura Ann Garren

 

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