Just imagine that you couldn't speak. The words are there, inside your head, but they are unable to come out.

You couldn't talk with your children on the telephone, communicate with your doctor, discuss the day's activities with your spouse or even order a pizza for delivery.

And when you do try to speak, you stumble on every word. Imagine your speech to be so slurred that people sometimes think you are drunk or mentally ill.

Aphasia.

Close to a million people in the United States are estimated to have it. More people have aphasia than Parkinson's Disease, muscular dystrophy or cerebral palsy. An additional 100,000 Americans acquire the disorder each year. Yet most people have never heard of it.

Aphasia is a problem of language, not of thinking. This communication disorder results from brain damage usually following a stroke. It can be caused by a head injury, brain tumor or other neurological problem.

'Speaking out! 2006'

June is National Aphasia Awareness Month. On the weekend of June 15-17 in Boston, Joyce Zeigler of Prosperity and I attended the Fifth National Conference of the National Aphasia Association, known as "Speaking Out! 2006."

An aphasic person sometimes cannot speak, read or write. They have not lost their intelligence, but their comprehension ability varies. At the conference. most survivors were able to speak understandably, although some were slow getting words out, and the cadence of their speech was irregular. In conversations, I would sometimes be asked to write out a key word.

Joyce and I are what professionals call "co-survivors," in that our husbands, Mack Zeigler and George Barnes, have aphasia and receive therapy at the University of South Carolina Speech and Hearing Center. The center is where we met the Zeiglers.

Joyce and I traveled to the Boston conference in hopes of identifying additional therapy resources, gathering the latest research reports and making contacts with other survivors, co-survivors and speech therapists to get ideas. A speech therapist (speech-language pathologist or SLP) is an aphasic's best resource.

An underdiagnosed condition

Many stroke survivors are never told that their difficulty communicating even has the name"aphasia," and the majority leave the health care system without referrals to resources in their own communities. At the Boston conference a lady from Florida who had a stroke at the age of 45 was sent home without a diagnosis. It took her most of a year to identify her problem.

In Orangeburg, I have seen other men who could not speak and were paralyzed on their right sides (an indicator of left side brain damage) in the nursing home where George received therapy. Because I knew their wives, I contacted some to "compare notes." It seemed odd to me that they had never even heard the word "aphasia."

At the conference, I learned that this is common. Also, I saw other patients sitting in their wheelchairs not communicating with anyone. Probably they have aphasia, and neither they nor their families know it. These examples indicate why aphasia is a hidden illness, and the professionals chose the theme for this year's Aphasia Awareness Month is "Aphasia: Getting the Word Out."

Local treatment

 Orangeburg area aphasia survivors are fortunate to have a Speech, Hearing and Language Clinic at South Carolina State University. According to Dr. Harriett Gregg, director of the clinic, they offer complete evaluation and treatment and would love to have adult clients.

As a university clinic, students pursuing master's degrees in speech and language pathology work with the clinic's clients and are supervised by a professor who usually has a doctorate degree.

"We bill on a sliding fee scale. We accept Medicare, Medicaid and private insurance; but no one is turned away for inability to pay," Dr. Gregg emphasized.

Local medical doctors also treat those with aphasia. Orangeburg neurologist, Dr. Mohammed Alhatou, diagnosed my husband, George, shortly after his November 2003 stroke. Dr. Bismarck Amoah-Apraku, an internal medicine specialist at The Family Health Centers, now follows his case. An additional local member of George's team is Mitzi Williams, occupational therapist at The Regional Medical Center. She works with the speech therapists on appropriate augmentative communication devices.

A Bill of Rights

Recently the National Aphasia Association adopted a Bill of Rights for people with aphasia. It was presented at the Conference by Harvey Alter, the groups' first president to have aphasia. Alter, a criminal investigator from New York City, has an enthusiasm that is contagious. His speech is easy to understand, although not normal.

Among those rights was the patients' rights to be told, as soon as it is determined, both orally and in writing, that they have "aphasia" and what that means. It also stated that hospitals should provide the diagnosis in writing upon release of patients. Patients should also be told what local resources are available and have access to outpatient therapy by a speech pathologist. Research should not be done on these individuals, the Bill of Rights said, without their informed consent, and health care agencies and facilities should establish requirements for caring for people with aphasia.

Contacts

Joyce and I were happy about the contacts we made and the information we gathered at the conference. If you are curious for more information or think your loved one might have aphasia, these are places to begin compiling information after you consult with your doctor, speech therapist or health professional.

National Aphasia Association: 800-922-4622, www.aphasia.org

Aphasia Hope Foundation: 866-499-5804, www.aphasiahope.org

American Stroke Association: 888-478-7653, www.strokeassociation.org

Adler Aphasia Center: 201-368-8585, www.adleraphasiacenter.org

National Family Caregivers Association: 800-896-3650, www.nfcacares.org

University of South Carolina Speech and Hearing Center: 803-777-2614, www.sph.sc.edu

University of Michigan Residential Aphasia Program: 734-764-8440, www.aphasiahelp.com

South Carolina State University Speech Hearing and Language Clinic: 803-536-8073, www.scsu.edu (click on "academics," then "graduate studies," then "degree programs," and, finally, "speech pathology & audiology.")

Joy W. Barnes is an Orangeburg realtor and a co-survivor of aphasia with her husband, George Barnes.

You must be logged in to comment.