The burden of living with Parkinson’s disease in Kenya
In late 2020, Josephine Nduta Kahingo, 52, noticed she was moving with a shuffling gait and her hands became stiff and sluggish.
She reasoned the exertion of taking care of her 13-year-old daughter who has severe cerebral palsy was causing the symptoms.
“I was treated for a nerve problem upon my first visit to the hospital and put on medication. Unfortunately, my health condition did not improve from this initial misdiagnosis. And as is our culture to visit ailing friends and family, my friends came to see me and upon seeing my condition connected me with a neurologist immediately,” says Josephine.
After more than a year of incorrect diagnosis, Josephine, was finally given the correct diagnosis and prescribed Parkinson’s Disease (PD) medication that resolved the shuffling movement, stiff hands, and mask-like facial expression (hypomimia).
Despite being on medication to manage some of the symptoms of Parkinson, Josephine says the disease has upended her life to great degrees.
“I cannot carry out tough house chores; my body sometimes becomes ‘loose’ or rigid all of a sudden, and my mind will sometimes just shut out. I have also become very fearful of falling,” says Josephine.
She continues “I was in denial after the diagnosis because this is a lifelong disease that has no cure, I worry sometimes that the drug I use daily may run out.”
Parkinson’s disease is a degenerative disease that causes unintended or uncontrolled movements such as body tremors, stiffness, and difficulty with balance and coordination. Parkinson’s happens when a part of the brain called the basal ganglia responsible for movements ceases normal functioning.
Dr Juzar Hooker, a consulting neurologist at Aga Khan Hospital, says the most common symptoms of PD are stiff limbs, abnormal posture on the side, slowness of movement, and problems with controlling bladder and bowels.
“At the moment, there is no cure for Parkinson’s Disease. About 5-10 per cent of Parkinson’s is genetics, but the majority of people diagnosed do not have a genetic cause of Parkinson’s. But they may have genes that put them at risk,” said Dr Hooker.
He adds that studies have shown a link between exposure to insecticides and incidence of Parkinson’s disease. “If a bug is not harmful there is no need of using chemicals to kill it.”
The specialist further says physical, occupational, and speech therapy are important in managing Parkinson’s even as patients continue to wait for a disease-modifying treatment. He adds that patients must remain active by exercising.
“There is a drug that helps elevate the levels of dopanine hormone in patients with Parkinson’s, because dopamine is usually low. There are treatments of auxiliary symptoms such as drooling, excessively going to the toilet, depression, and anxiety. Others are Deep Brain Stimulation (DBS), which is expensive,” he says.
People aged 60 years and above are at a higher risk of developing Parkinson’s.
The prevalence of PD in the country is not known, however, there are 8.5 million people in the world living with the disease according to data by the World Health Organisation (WHO).
The WHO, however notes that disability and death due to Parkinson’s are increasing faster than any other neurological disorder.
“Current estimates suggest that, in 2019, the disease resulted in 5.8 million disability-adjusted life years, an increase of 81 per cent since 2000, and caused 329,000 deaths, an increase of over 100 per cent since 2000,” reads WHO brief on Parkinson’s.
Josephine says awareness of Parkinson’s is quite low in the country leading to mismanagement and stigma around the condition.
“My initial misdiagnosis caused me to take a lot of drugs for the wrong disease. The general public needs to appreciate when they see someone exhibiting symptoms such as tremors and give them grace. For instance, our matatus should not rush people who have tremors or moving slowly,” she advises.
Shortage of neurologists
Josephine now lives a day at a time drawing strength and hope from her Christian faith.
Peris Kilwake a former special needs teacher started being slow in her last year of retirement in 2016. Her knees became swollen and her hand began shaking.
“I thought it was old age that made me feel like this, but it was not,” says Peris.
Peris was eventually diagnosed with Parkinson’s Disease. To manage her condition she was put on a lifelong medication “It costs me Sh5,000 to see a neurologist and Sh3,000 for weekly medication,” said the retired teacher.
She also adds that the shortage of neurologists creates constraints on the quality of services offered to PD patients.
“We do not have a Parkinson’s disease nurse specialists in Kenya. Nurses can help patients and caregivers to navigate PD because the ratio of neurologists is low everywhere. A nurse can be an easy health personnel to access,” says Dr Hooker.
Peris walks with difficulty and her ability to perform tasks is considerably stymied by body tremors.
Grace Macharia, a speech and language therapist says that speech is an important element of therapy for patients with Parkinson’s.
One of the leading comorbidities in PD is aspiration pneumonia,” The aspiration phenomenon means the food has gotten to the lung and cut the short supply of air. Speech therapy helps you know how to control your swallowing muscles to avoid getting aspiration pneumonia,” Macharia explained.
To cope with PD, Peris is part of Parkinsons’ Support Group (PSG), which helps her wade through the murkiness of the disease. She encourages other patients and caregivers to be part of a support group for solidarity and exchange of relevant information.