The one and only Mohamed Ali had won many boxing battles but he gave up his fight against Parkinson disease. He died of Parkinson after years of struggle. The lives of many renowned personalities were also cut short due to the disease whose socio-economic impact is enormous.
Parkinson, a nerve system disease is prevalent in both developed and developing worlds; however, it is people of poor countries those suffer unimaginable pains due to poor awareness and treatments.
In Ethiopia, the disease is hardly known to the public, but it has continued to tear families apart, destroy lives and affect the country. Considered as a curse, the perception of people towards the disease had made it difficult to eradicate it. And the number of health facilities, Non Governmental Organizations working on its stands few.
However, having gone through tremendous twists and turns due to the disease, Kibra Kebede, a Parkinson patient, is trying to make life easy for people like her by establishing a charity organization which works on patients.
Kibra is an awareness advocate of Parkinson disease. Her struggle with Parkinson disease began twenty years ago. She is the founder of Parkinson Patients Support Organization- Ethiopia (PPSO-E), a local indigenous NGO working on life improvement of Parkinson patients in Ethiopia.
Her generous acts have earned her reputation and awards. She won 2018 Association of Women in Business (AWiB), Women of Excellence Award and received a title “Best Woman of the Year”. In addition to the title, she was awarded 100,000 Ethiopian Birr.
Parkinson disease is a progressive nervous system disorder caused by lack of dopamine levels in the brain. The disease cannot be identified in a laboratory. But, it can be spotted by neurologists based on the symptoms it shows. Studies indicate that symptoms appear at the age of 60 years or over in most people. But, sometimes it affects people under the age of 60; Kibra is one of them. She was affected nearly at the age of thirty.
The symptoms of Parkinson disease develop gradually. Some of the symptoms are uncontrollable movements; slow movement; rigid facial expression; stooped posture; feeling of stiffness in the body; and tremor in finger, hand or foot. Symptoms become worse over time.
“I was feeling pain in different parts of my body and I thought it was first related to excessive workload. I was too busy at that time. It looked easy when the pain started, but gradually it got stronger. As it got worse over time, I continued to visit with neurologists in the country. I also visited spiritual treatment. Many people supposed the symptoms were the result of bad spirits.” Kibra said speaking to The Ethiopian Herald.
She said she tried many types of treatments both in Ethiopia and abroad but the pain could not go away. All the doctors at that time were unaware of the disease. As a result, she became extremely depressed. After two years’ of severe pain she found out that she got Parkinson while being hospitalized in American hospital.
She graduated with a diploma in Crop Science at Debre Zeyit Agricultural College in 1981; with degree in same field from Haromaya University; and with Masters Degree in Management of Natural Resources at Norway University in 1992. She had served in the profession at various government organizations for many years.
“Despite having enormous passion to serving my country, I found out that I have Parkinson disease in 1998 while I was running my own consultancy firm.”
There are more than 10 million peoples in the world. The way to prevent is remains mystery. There is no medicine for the disease yet. But, some studies show that continuous physical exercise reduces vulnerability towards Parkinson’s disease. The medicine that used to relieve is Sinemet, it is a combination of two drugs – Carbidopa and Levodopa. The necessity of Sinemet is to replace dopamine.
“After going to the US for medical treatment and knowing my disease, I tried to find out about awareness of Ethiopians towards the disease. I spoke with the concerning bodies. At that time, almost everyone had no idea about the disease,” she added, noting that she was saddened to find out that there are people who had no information about the disease and they were being stressed with not knowing their illness.
Then, after a long discussion with her family, she decided to establish an organization to support the patients. She then founded Parkinson Patients Support Organization-Ethiopia (PPSO-E).
The establishing of the organization was successful after two years of struggle in 2011. The main reason why an association is needed is to fill information gap about the disease; to create awareness; and to support the patients with finance, item, and guidance, Kibra underscored.
The organization was founded by three patients of Parkinson and two other volunteers. The founding members include I and, Thomas Mathanovich, Assefa Zegeye, Ehitemariam Tadesse, and Fikirte Ayele.
“Our activities are categorized in three – awareness creation; capacity building; and providing support and care.”
With respect to awareness creating, they use different strategies – celebrating World Parkinson Day, disseminating information about the disease through public and private media; distributing different printed papers; organizing different meetings and workshops to discuss with concerning bodies; presenting on high human trafficking places about the disease; and lobbying neurologists to be their members.
“In terms of capacity building, we have been giving training for Parkinson patients, caregivers, health extension staffs, and general practitioners. And also, we regularly organize workshop where patients share their experiences.”
The other and main activity of the organization is providing care and support for Parkinson patients with finance and item. The organization has 650 members seeking supports. “We give money for medicine and consumable goods. We also provides items like clothes, blankets, and other and build modern toilet for patients besides providing guidance service.”
Since its inception, various organizations and volunteers have been supporting our organization in finance and kinds.
“There are many changes especially among Parkinson patients. Improvement in living condition, knowledge, awareness, belief, and social life are the main changes so far achieved, she said.
Therefore, encouraging progresses are happening in government organizations. Now, the people believe that they should not be Parkinson patients to support people affected by disease. Currently, many people understood that Parkinson symptoms are not the result of bad spirits as well, Kibra added.
Despite slight progress, life is still difficult for Parkinson disease and the country is having tremendous burden because of unavailability and high cost of medicine; lack of neurologists; inflation, and others, according to her.
Kibra said that she has many plans in the future. “We planned to encourage researches to be conducted on Parkinson disease in the country. We also look forward to build center for patients and expand our service to all parts of the country.”
The Ethiopian Herald September 6, 2019
BY ABDUREZAK MOHAMMED
