Passengers woke to the sound of many voices.<\/p>\n
I am part of the CAEF (Community Assistance Ecosystem Framework)\nresearch team from several universities in Indonesia and Australia. Our\nteam designed a web-based application for stroke sufferers and\ncaregivers in Manado and Gorontalo, sponsored by KONEKSI.<\/p>\n
Some stroke patients we interviewed experienced aphasia.\nNevertheless, they appeared to enjoy conversations and attempted to\nrespond to every question using hand gestures and sounds, even if they\nwere unclear. We allowed more time for patients to answer questions.\nTheir facial expressions and gestures showed a strong desire to\ncommunicate and be heard. We even invited our patients to sing and watch\nvideos they enjoyed.<\/p>\n
Aphasia, or the loss of speech ability due to a stroke, may be the\nmost neglected type of disability. This post-stroke disorder appears\nlater in life rather than being congenital. As a result, stroke\nsurvivors often deny it by isolating themselves or refusing to engage in\nactivities associated with physical disability. They believe this\ncondition will pass, even though post-stroke disabilities, particularly\naphasia, rarely fully recover.<\/p>\n
In Indonesia, stroke is the cause of 350,000 deaths every year. High\nmorbidity is formed because stroke results in long-term disability for\nhalf of those affected. Patients who survive are at risk of permanent\nimpairment, such as paralysis of limbs, especially if not treated\nimmediately.<\/p>\n
Physically, the impact of stroke affects almost all aspects of a\npatient\u2019s life, depending on the location and extent of brain damage.\nStroke sufferers may experience difficulty finding words, understanding\nconversations, remembering things, concentrating, or controlling\nemotions.<\/p>\n
The American Speech-Language-Hearing Association (ASHA) states that\napproximately 30%-40% of post-stroke patients experience aphasia.\nHowever, reports of aphasia incidence remain low because it is often\nmasked by other more visible stroke symptoms, such as paralysis or loss\nof consciousness.<\/p>\n
In truth, aphasia does not affect the intelligence level of\nsurvivors. Aphasia patients do not suffer from cognitive impairment but\nstruggle to express their thoughts. Some stroke survivors with a decade\nof aphasia can still recognise family members\u2019 faces, know what they\nwant to say, and may even have constructed sentences in their minds.\nHowever, when they open their mouths, the words that emerge do not match\ntheir intentions. They know, but they find it difficult to express.<\/p>\n
This is where the problem lies: when someone takes a long time to\nanswer a question, we often become impatient, taking over the\nconversation or asking family members to answer while the stroke\nsurvivor remains silent. People assume they are confused or do not want\nto speak, when in fact, they may be struggling intensely to utter a\nsingle simple sentence.<\/p>\n
Aphasia disorder also has a gender dimension. In patriarchal\nsocieties, men are expected to convey their views directly and openly.\nConversely, in formal meetings, women\u2019s voices are often represented by\nmen. When a man suffers a stroke and experiences aphasia, the level of\nsocial pressure increases due to the difficulty of expressing his\nthoughts. Consequently, they may find it harder to control emotions,\nbecome more aggressive, and it can lead to violence against partners.\nConversely, the social perception that women are not adept at expressing\nviews makes it even harder for women with aphasia to express their\nfeelings or thoughts.<\/p>\n
Whether male or female, sufferers of aphasia often face greater\nchallenges in their social environments than just difficulty speaking.\nThey feel ashamed, lack confidence, and avoid conversations for fear of\nmispronouncing words or making it difficult for others to understand\nthem. They also fear becoming the subject of jokes. As a result, they\nwithdraw further from their social environment, feeling isolated and\ncast out from society.<\/p>\n
Communication disorders can alter social relationships, work, family\nroles, and even how a person perceives themselves. The change in\nidentity for stroke survivors with aphasia demonstrates how vital\nlanguage and communication are in shaping an individual\u2019s identity. When\nverbal ability changes, a person faces the process of rebuilding their\nidentity.<\/p>\n
Senior comedian Tukul Arwana suffered a brain haemorrhage in 2021,\nwhich resulted in speech difficulties. This condition forced him to\nretire from the entertainment industry to focus on various therapies and\ntreatments. To date, his condition is gradually recovering, and he is\nable to communicate again. The support of family and loved ones has\nplayed a significant role in his recovery.<\/p>\n
A head of a household, once a decision-maker, suddenly finds it\ndifficult to express opinions; someone who once enjoyed socializing with\nrelatives begins to avoid them because they cannot follow a\nconversation; or a mother who loved giving advice or was the loudest\nvoice in the house now remains silent or speaks unclearly.<\/p>\n
Aphasia makes a person dependent on others, not because they have\nlost the ability to perform activities, but because they struggle to\nexplain their needs or communicate with others. In such situations,\nfamilies may take over various decisions, potentially stripping the\npatient of control over their own life.<\/p>\n
The role of the family is crucial as they are the ones interacting\nmost frequently with the patient. Rather than taking over all\ncommunication, families need to learn to give patients the opportunity\nto express themselves. They need to learn to wait patiently for answers\nand use simple questions, pictures, or gestures to ensure the patient\ncan understand the message.<\/p>\n
Aphasia patients have the right to receive information and be\ninvolved in decisions regarding their condition through an\naphasia-friendly communication approach. We need to stop measuring a\nperson\u2019s intelligence solely by the fluency of their speech.<\/p>", "url": "https:\/\/jawawa.id\/newsitem\/how-aphasia-isolates-stroke-survivors-1789372459", "image": "" }, "sponsor": "Okusi Associates", "sponsor_url": "https:\/\/okusiassociates.com" }