Jane Njenga and Steven Kuria: We are here for each other, for better or worse

There are many reasons Jane Wanjiru Njenga is grateful to have cheated death in the 1998 bomb blast, including being able to take care of her children. But most importantly, she is thankful that she is still alive and able to stretch a graceful hand at her husband’s time of need.

On the dreaded day, she recalls how her husband, Steven Kuria, had walked from Eastleigh to Co-operative House when he learnt that her workplace had crumbled. He had been so shaken he forgot his car and thought it was faster if he walked on foot.

When Jane came to after emergency surgery to stitch her tongue and lip, she could only think of how worried he must have been, trying to locate her the entire night. Even while she recovered and her husband was hit by hypertension, Jane was grateful to be there, and now, she feels she has a chance to be the pillar he needs at his most trying moment.

Steven, 59, was a man to whom family was most important, and as the breadwinner, he made sure his wife and children, even grandchildren, were happy and fulfilled. He worked hard, and in the final years into his retirement, he built a family home that he hoped they would enjoy their post-retirement life in.

Amyotrophic Lateral Sclerosis

However, as old age creeps in, he is unable to hold or play with his grandchild. He can’t hoist her on his lap and tell her stories or sing nursery rhymes for her. Instead of enjoying the labour of his youth, he is stuck in a wheelchair, battling Amyotrophic Lateral Sclerosis (ALS) that has impaired his speech and movement.

As a result, he has to repeat himself often when he speaks, and sometimes, the family members don’t understand what he says. This is one of the reasons his stationery business closed down. He couldn’t give instructions to his children on how to run it. Now, the only reminder that he was once an accomplished businessman is the idle stock lying in one of the rooms in the house.

In his eyes, his wife sees the agony he feels at her having to take care of his family. He is burdened to see his wife overworking to provide for him, even though she has no job and has been a housewife for a while now.

While he loved to handle his businesses by himself, now he has to depend on his caregiver Geoffrey, who is always with him from morning to night. Geoffrey bathes, feeds, dresses and moves him around.

The National Institute of Neurological Disorders and Stroke (NIH) classified the disease he suffers from as rare and neurological. It primarily affects the nerve cells (motor neurons) responsible for controlling voluntary muscle movement. Voluntary muscles are those muscles we choose to move and facilitate activities such as chewing, walking and talking.

Like other motor neuron diseases, it is caused by gradual degeneration and death of motor neurons that extend from the brain to the spinal cord and muscles throughout the body.

Since patients with the disease experience muscle weakness, they experience difficulty doing simple tasks such as buttoning a shirt. They can also experience awkwardness in walking, swallowing and talking. The condition progresses over time and muscle weakness spreads to other parts of the body because Steven has been stuck in a wheelchair for two years.

Steven is slow in speech. His daughter, Nungari Kuria, speaks to this writer on his behalf about 99 per cent of the whole interview. Steven only chips in to respond to questions that his daughter wouldn’t know the answers to.

Steven’s troubles started in 2018, when out of nowhere, his limbs began twitching. A year later, he started feeling muscle weakness, and walking became an uphill task. Eventually, he started stumbling, and his family took him to hospital, where he was diagnosed with Myasthenia Gravis.

The family would later find out that this diagnosis was wrong, even though it showed almost similar symptoms. Myasthenia Gravis also affects the body’s voluntary muscles, but it is caused by antibodies destroying communication between nerves and muscle, resulting in weakness of the skeletal muscles.

CT scan

In 2020, he was taken for a CT scan, Nairobi Hospital for an MRI scan to check the condition of the nerves, and it was discovered that he was instead suffering from Amyotrophic Lateral Sclerosis (ALS).

“Doctors were not very forthcoming. They told him to take drugs and asked us to monitor his progress,” Nungari reveals.

Having taken about two years to get the correct diagnosis, the symptoms had progressed. Just like his legs, his hands became weak, and feeding himself became a tall order. Holding a spoon, scooping food and directing it to the mouth would take him time.

“To prevent him from tripping, we got him crutches to help him walk. That was February 2020. By April the same year, his condition had deteriorated fast, and in two months, he went from walking with crutches to needing assistance to move from one point to the other. That was when we got him a wheelchair,” says Nungari.

Now confined to the wheelchair, Steven spends most of his time watching television, sleeping and doing light exercises. His day begins at 8 am…when he takes his breakfast and downs his six morning tablets. As his wife runs errands, Steven can take naps, and he can only sleep facing one side for two hours. If he isn’t sleeping, he is fed his smoothie and has a glass of water after each hour.

His first caregiver, Geoffrey is a qualified masseuse who was trained by Spinal Injury Hospital on caregiving. Having cared for his grandfather, who had the same condition for more than ten years, he was the perfect fit for Steven. He is the one that wakes him up, brushes his teeth, attends to his bathroom needs and gives him physiotherapy sessions thrice a week.

As far as feeding is concerned, Steven can take two hours taking breakfast. When he went for a check up in April this year, his doctor advised that he get a feeding tube, but the family was unable to do so because of lack of funds. It is the very reason his meals are supplemented with smoothies to ensure that his nutrient uptake is good.

With his condition termed as a terminal illness, no insurance covers the cost of medical treatment. He takes tablets for ALS, high blood pressure and anti-depressants. For these, the family has to part with Sh42, 000 per month. This is besides the monthly payments for his caregiver and the family’s necessities such as food.

“The family is only living by grace, and we have even sold some household items to be able to purchase drugs for him,” says Jane.

“With ALS being progressive, Steven may fail to speak completely and may struggle to breathe on his own when the condition gets to advanced stages.

“This means he might need a mechanical ventilator to help him breathe. He may also need a tracheostomy (where doctors insert a tube in a surgically created hole at the front of your neck leading to your windpipe connects to a respirator). But these are mostly available only in hospitals, and with Covid-19, this makes the situation dangerous,” adds Nungari. To function properly, he needs an eye gaze electronic device that would allow him to control a computer or tablet by looking at words or commands on a video screen.

“He has no other means of communication. I have done research to see if we could get other types of communicative devices that we can use in the meantime, but I haven’t gotten any that is specific to his needs,” says Nungari.

“This condition has limited him. It feels like being a prisoner to your own body. While all his senses are still functioning, and his brain can send signals to the rest of the body, the nerves don’t respond, and so the muscles don’t act,” she adds.

Nungari’s only lament is that the machine itself is so expensive, and that coupled with value-added tax and shipping costs, the family will need at least Sh2.6 million. In the US, she says, patients who cannot afford medical care due to ALS are loaned the equipment for some time.

No social life

Nungari and her mother are also saddened that Steven’s social life has taken a nosedive despite having a very loving family that has never failed to show up for him.

“My father was a very philanthropic man who always had time for his friends, but none of them has ever visited him. We have constant guests, but most of them are family members. I can’t imagine how he must be feeling,” bemoans Nungari.

“He gave us everything we needed when we were growing up, and now it hurts us that we can’t get him the healthcare he deserves,” she adds.

Her mother agrees: “It is also emotionally draining. You try to do your best, but it feels like you are not able to give him everything that he needs. I also have to be with him even though I need to go out and look for money to sustain the family. I wish the government could recognise such rare diseases and help.”

No treatment can reverse the damage caused by ALS, but they can slow the progression of symptoms, prevent complications, and make the patient more comfortable and independent. Despite having no cure, scientists are conducting clinical experiments that can reverse neuromuscular damage.

ALS affects people of all races and ethnic backgrounds. Although the disease can strike at any age, symptoms most commonly develop between 55 and 75. Men are slightly more likely than women to develop ALS. However, as people age the difference between men and women disappears.

Nearly all cases of ALS are considered sporadic. This means the disease seems to occur at random with no clearly associated risk factors and no family history of the disease. Although family members of people with sporadic ALS are at an increased risk for the disease, the overall risk is very low, and most will not develop ALS.

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