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HEALTH MATTERS: Stroke survivor lives with aphasia, a neurological disorder

After a massive stroke due to hypertension, 34-year-old Rosalind “Roz” Ellen was affected by a neurological disorder called aphasia (uh-fay’-zhuh).

While most people have never heard of aphasia, the condition is more common than Lou Gehrig’s disease, Parkinson’s disease, cerebral palsy and muscular dystrophy.

Ellen is one in a million people in the United States who are affected by the disorder, which occurs when parts of the brain (the left side) that controls language is damaged. It also affects a person’s ability to use or comprehend spoken and written words. The National Aphasia Association says that one-third of all stroke survivors are diagnosed with aphasia.

About 2 million people in the United States are expected to be affected by aphasia by year 2020. It affects every person differently and usually occurs as a result of a head trauma, infections, neurological conditions, brain degeneration, tumor or stroke. Eighty-five percent of aphasia is caused by stroke.

June is National Aphasia Awareness month established to raise awareness of this devastating, yet little known condition, improve society’s attitudes toward persons with aphasia and spread a message of hope after a stroke to those who develop aphasia.

For a former U.S. Army veteran with nearly three years of service, Ellen was trained to be a fighter and a survivor.

“I was working full time and raising my boys when I had the stroke,” Ellen said. “I was unable to speak and was completely paralyzed on the right side of my body.”

Ellen fell into a coma for one month and stayed hospitalized for several months.

Source: National Aphasia Association

When the blood supply to the brain is reduced or interrupted, a stroke can occur and can result in a coma. Ellen regained consciousness due to the medical care and the efforts of her family who never gave up. Her sisters communicated with Ellen while she was comatose through a variety of ways.

“I remember hearing the song, ‘Somewhere over the Rainbow,’ by Patti LaBelle,” Ellen said. “It is my favorite song and meant so much to my recovery.”

At the time of her stroke, Ellen was a librarian and her career was based on her ability to read, write, understand others and communicate with people who visited the library. While Ellen survived the stroke, she suffered from Broca’s aphasia.

There are 6 types of aphasia: anomic aphasia, Broca’s aphasia, global aphasia, mixed nonfluent aphasia, primary progressive aphasia and Wernicke’s aphasia.

Ellen’s condition caused her life to change dramatically. She could no longer work or care for her boys. Aphasia affects a person’s ability to communicate; however, it does not affect their intellect.

Aphasia symptoms include: making short or incomplete statements, making senseless statements, difficulty speaking and writing, substituting one word or sound for another, speaking nonexistent words, failure to understand people’s statements and writing sentences that make no sense.

Her journey as a single parent of two young boys had challenges. The father of her children had died, but fortunately Ellen’s mother and two sisters rallied around her to take care of her and raise her boys. Strokes are the leading cause of long-term disability.

According to WebMD, in the U.S., more than 50 million people provide care for a loved one with a disability or illness.

The World Health Organization reports that high blood pressure contributes to more than 12.7 million strokes worldwide.

Ellen received outpatient speech therapy.

“I wanted to read again, so I kept in touch with my speech-language pathologist,” Ellen said.

Long after she was discharged from the therapy program, her speech therapist found an option to help Ellen regain some of her language and comprehension functions.

The Stroke Association shares tips to know about someone with aphasia:

• It is important to make the distinction between language and intelligence.

• Many people mistakenly think they are not as smart as they used to be.

• Their problem is that they cannot use language to communicate what they know.

• They can think, they just can’t say what they think.

• They can remember familiar faces.

• They can get from place to place.

• They still have political opinions, for example.

• They may still be able to play chess, for instance.

Three and a half years after her stroke, Ellen was referred to Denise McCall, a research speech-language pathologist, working for the University of Maryland’s Department of Neurology, to participate in a research study using computerized treatment to improve language in individuals with aphasia.

“Roz participated in several different aphasia treatment studies for nine years,” McCall said.

In 2008, McCall invited Ellen to a new endeavor, the Snyder Center for Aphasia Life Enhancement (SCALE), an aphasia center designed to provide people with aphasia a place to connect with their peers and live well with aphasia.

“I needed leaders and well-adjusted individuals to serve as role-models for folks who had not been living with aphasia for very long,” said McCall, who is now the program director for SCALE. “Roz agreed and was given a scholarship to cover her tuition.”

Ellen attended SCALE for two days a week in 2008.

“She has been attending ever since,” McCall said. “In 2014, SCALE merged with the League for People with Disabilities.”

Ellen continued to work on her reading.

“I joined SCALE’s book club and I can listen to audio books and follow the story in large print text,” Ellen said.

In 2015, Ellen’s caregiver, her mother Sarah Johnson, died at 90 years of age.

Ellen had been living with her mother since her stroke in 1994.

“I was determined to live independently and did not want to move in with any of my sisters,” she said.

Ellen demonstrated great determination and strength and showed her family that she could manage well on her own with the support of a Veterans Administration-appointed aide a few hours a week to help with showering for safety reasons.

Her adult sons have stepped up to lend a hand. Last summer, her youngest son, Dwight, joined SCALE on a fishing trip. He helped his mother fish and brought her lunch.

“I was overjoyed to have him with me for the day,” Ellen said.

Today, at 57, Ellen is no longer in the study, but is an ambassador for SCALE. She speaks in short sentences and still has a lot of difficulty retrieving words.

As a survivor, living semi-independently, and thriving, Ellen brings hope, faith and perseverance to fellow members and newcomers to the SCALE program.

Resources:

American Speech-Language-Hearing Association – www.asha.org

Aphasia Access – www.aphasiaaccess.org

The Aphasia Institute – www.aphasia.ca

National Aphasia Association – www.aphasia.org

National Stroke Association – www.stroke.org

The League for People with Disabilities Inc. – www.leagueforpeople.org

World Health Organization – www.who.int/en

Marie Y. Lemelle, MBA, a public relations consultant, is the owner of Platinum Star PR and can be reached on Twitter @PlatinumStar or Instagram @PlatinumStarPR. Send “Health Matters” related questions to healthmatters@wavepublication.com and look for her column in The Wave.