Stroke's second blow: When survival comes at a price for patients, families

For Mary Wambui, 85 years old, surviving a stroke came at the cost of the independence she had spent a lifetime building. Once a hardworking woman who relied on casual labour to feed her family, she now depends on others for some of the simplest activities of daily living. The woman who once carried heavy loads and spent long days searching for work can no longer provide for herself, let alone perform the tasks she previously took for granted.

“I used to work and provide for myself, but now I depend on other people for almost everything. I cannot even do the things I used to do,” she says.

Wambui suffered a stroke 5 months ago while at work. At the time, she did not understand what was happening to her until she found herself in hospital, where doctors confirmed the diagnosis. Her life has never been the same.

But while the stroke altered Wambui's physical abilities, its effects have extended far beyond her. Her daughter, Sarah Mumbi, has had to assume the responsibility of caring for her mother while also providing for her own children, who are still in school.

For Sarah, every day presents a difficult balancing act between caregiving, household responsibilities and the financial demands of keeping her mother alive and comfortable.

Her mother's needs are constant. She requires assistance with feeding, bathing, taking medication and changing diapers. Sarah must also ensure that Wambui is attended to before leaving home to handle other responsibilities.

“When I leave early in the morning, I have to make sure she has eaten and taken her medication. When I return, I still have to attend to her other needs. It is not easy balancing caregiving with my responsibilities as a mother,” she says.

The financial strain has made the journey even more difficult. Sarah recalls taking her mother to hospital in Kikuyu, where they were asked to pay approximately Sh24, 000 for a CT scan. Unable to raise the amount, the family struggled to access the medication.

Even after hospital visits, the cost of prescribed medication remains a challenge, with some drugs requiring families to purchase them from private pharmacies.

“I have to buy her medication, food and other necessities. Sometimes I have to choose between meeting her medical needs and providing for my children, who are still in school and depend on me,” she says.

Although the church has occasionally supported the family, the assistance has not been enough to meet the growing needs.

Sarah's experience exposes a difficult reality for many Kenyan households: surviving a stroke is only the beginning of a long and expensive journey. Beyond emergency treatment, survivors may require months or years of rehabilitation, medication, specialised care and assistance with everyday activities. For families without reliable incomes, these demands can quickly become overwhelming.

Mary's story is among the experiences bringing renewed attention to the challenges facing stroke survivors and their caregivers as Kenya marks World Stroke Day. It also raises questions about the country's preparedness to manage a condition whose consequences can stretch far beyond hospital wards.

For Dr Evans Nyambega, chairman of the Stroke Association of Kenya (SAoK) and a stroke survivor, the difficulties facing patients are a personal reality. His experience with the condition motivated him to establish an organisation that would give survivors a collective voice and push for better services.

He says the association began its journey in 2011, with formal registration taking effect later.

“When I went down with this condition, it put a lot of questions in my head. I asked myself, if a medic can suffer this much, what about the ordinary Kenyan?” he says.

Nyambega explains that the high cost of medication and the difficulties patients encountered in accessing treatment convinced him that survivors needed an organised platform to advocate for change.

He believes individuals struggling with the condition have limited influence when engaging government institutions, but a collective voice can help draw attention to their concerns.

His concerns were reinforced in 2015 when he approached the Ministry of Health to establish what national strategy existed for stroke management. He says he was surprised by what he considered inadequate recognition of stroke in the policy framework at the time.

The experience strengthened his conviction that Kenya needed stronger awareness, prevention and advocacy programmes.

More than a decade later, he says the gaps remain significant, particularly in rehabilitation, medication and psychosocial support.

“Look at rehabilitation. The cost of rehabilitation is very high, and we need a lot of research on rehabilitation so that we have new ways of helping survivors,” he says.

He also points to the limited resources available to organisations supporting survivors. The Stroke Association of Kenya, he says, relies heavily on well-wishers and partners to sustain its activities and assist members.

Nyambega says the association received Sh50, 000 from the government to support approximately 60 survivors, an amount he considers inadequate given their needs, including transport and other essential expenses.

Although some survivors benefit from government assistance through the National Council for Persons with Disabilities, he believes stroke patients need more targeted support.

He is calling for increased government funding, affordable medication and better access to rehabilitation services.

But what exactly happens when someone suffers a stroke, and why does recovery demand so much time and money?

Dr Godfrey Ashiwungo Shilibwa, a specialised physiotherapist with experience in neuro-rehabilitation, explains that stroke occurs when the blood supply to part of the brain is interrupted, depriving brain tissue of oxygen and nutrients.

The condition is broadly classified into two major types: ischemic stroke, which occurs when a blood clot blocks a blood vessel supplying the brain, and hemorrhagic stroke, which happens when a blood vessel ruptures, causing bleeding in or around the brain.

The interruption of blood supply can damage brain cells, affecting functions such as movement, speech, memory, balance and coordination. The effects vary depending on the part of the brain affected and the extent of the injury.

Shilibwa identifies uncontrolled high blood pressure, diabetes and high cholesterol as important risk factors. These conditions can damage blood vessels or increase the likelihood of clots that may obstruct blood circulation to the brain.

He says prevention begins with understanding one's health status and managing underlying conditions.

“You need to know your blood pressure. You need to know your levels of sugars in the blood. You also need to know if you have cholesterol in your system so that you can start managing those conditions,” he says.

Maintaining healthy dietary habits, engaging in regular physical activity and attending medical check-ups are also important in reducing the risk.

However, when a stroke occurs, time becomes critical.

Sudden weakness or numbness, particularly on one side of the body, facial drooping, difficulty speaking and sudden confusion are among the warning signs that require urgent medical attention.

Some patients develop symptoms while carrying out their daily activities, while others wake up unable to move one side of their bodies.

Shilibwa warns that suspected stroke symptoms should never be ignored. Patients should be taken to hospital immediately for assessment and appropriate treatment.

Brain imaging is particularly important in determining whether a stroke is caused by a blood clot or bleeding, since the two conditions require different treatment approaches.

He also challenges the misconception that stroke is exclusively a disease of old age.

Although the risk increases with age, younger adults and children can also suffer strokes, particularly where underlying medical conditions or other causes are present.

“I have seen patients as young as 25 and 32 years suffering from stroke. Stroke does not look at age. It cuts across all ages,” he says.

The condition can therefore affect people during their most economically productive years, leaving families struggling when a breadwinner suddenly becomes dependent on others.

Yet even after emergency treatment, the journey towards recovery can be long and financially demanding.

Shilibwa says rehabilitation is essential in helping survivors regain lost functions, but its cost places considerable pressure on patients and their families.

He estimates that a physiotherapy session can cost approximately Sh2, 000, with some patients requiring daily sessions during the first six months, depending on their condition and rehabilitation needs.

Physiotherapy, however, is only one part of the recovery process.

Some survivors also require occupational therapy, nutritional support, psychological care and continued medical reviews. Each service attracts additional costs, making treatment difficult for families paying out of pocket.

“A patient may need to see five different specialists. If they are paying an average of Sh2, 000 for each service, they could spend about Sh10,000 in a day,” he says.

He estimates that cumulative treatment expenses can reach approximately Sh200, 000 a month for some patients receiving multiple services.

Such costs, he argues, make stroke particularly difficult to manage for families whose incomes are already stretched.

He points to gaps in the country's healthcare financing arrangements, including the Social Health Authority (SHA), arguing that stroke survivors need more comprehensive financial protection.

Although the government has introduced various healthcare packages, he believes there should be specific consideration for patients requiring prolonged rehabilitation and specialised care.

One of the biggest challenges is treatment discontinuity. Patients may begin rehabilitation with the hope of regaining their independence but are forced to stop when they can no longer afford the sessions.

“When patients tell me they cannot afford to continue coming for care, the treatment is discontinued. When that happens, the chances of recovery become less and less,” he says.

He wants the Ministry of Health to consider a dedicated stroke care package that supports patients through the different stages of treatment and rehabilitation.

Beyond physiotherapy, occupational therapy plays an equally important role in helping survivors rebuild their independence.

At Crisha Physiotherapy Centre, occupational therapist Allan Anyolo says rehabilitation must be guided by the individual needs, priorities and previous lifestyle of each patient.

The objective is not simply to restore movement, but to enable survivors to return to meaningful activities and participate in their families and communities.

For someone who previously worked as a manager, rehabilitation may focus on restoring the abilities needed to resume professional responsibilities. For another survivor, the priority may be regaining the ability to dress, feed themselves, wash clothes or perform household tasks.

“When we see a patient, we look at the areas they need or want, or those that are a priority to them,” Anyolo says.

He explains that stroke can affect sensory processing, fine motor skills, coordination and cognitive functions, making even seemingly simple activities difficult.

Occupational therapists use structured activities to help patients rebuild these abilities. Such interventions may include beadwork, threading and sewing exercises to improve coordination and fine motor control.

Cognitive rehabilitation is also important, particularly for survivors experiencing difficulties with memory, attention and visual processing.

Anyolo gives the example of a patient who struggles to see all the food on a plate after suffering a stroke. Through visual scanning exercises, the therapist helps the patient improve their ability to notice objects within their field of vision.

The ultimate objective is to help survivors regain independence and adapt to their surroundings.

Rehabilitation must also extend beyond the hospital or therapy centre. How patients navigate their homes and interact with their communities is an important part of recovery.

Anyolo says stigma remains a challenge, with some survivors being defined by their disability rather than their abilities and potential.

Occupational therapy helps them rebuild confidence, participate in society and return to activities that give their lives meaning.

But the success of these interventions depends on sustained access to care, financial support and the involvement of families.

For Wambui, the hope of regaining some independence remains central to her recovery. For Sarah, that hope comes with the daily responsibility of ensuring her mother receives the care she needs despite the financial difficulties.

Their experience highlights why stroke should not be viewed solely as an emergency medical condition. It is also a long-term public health and social protection concern that affects survivors, families and communities.

As Kenya continues to expand access to healthcare, survivors and specialists say greater attention must be paid to what happens after initial treatment: affordable medication, accessible rehabilitation, psychological support, reliable data and financial protection for caregivers.

Nyambega believes the government must increase resources allocated to stroke survivors and strengthen partnerships with organisations working to improve their welfare.

For him, the message is simple: survivors should not be left to navigate recovery alone.

Behind every person living with stroke is often a family making difficult choices, sacrificing time, income and personal responsibilities to provide care.