Courage & Humility in the Face of Parkinson’s – Kibra Kebede
Born in 1963 and raised in Gulomekada Woreda in Tigray Region, Kibra went to school as her father was the only person that sends his daughters to school at that time. She then moved to a bigger town, Wukro, where her Grandfather lives.
Having earned her Diploma with Distinction in Agricultural Economy from Debrezeit Agriculture College, Kibra was assigned to work for the Ministry as Agronomist in a field project in a place called Dedo in Djimma. While serving in Djimma, Kibra had the opportunity to travel to Israel to further her professional capacity. She still remembers the good times she had with the farmers at Dedo at her young age and recalls her commitment and energy to make things happen for the farmers was unreserved.
The responsibility she had for the farmers thought her to be more concerned to her community. Their love and respect encouraged her to help them even more. In the mean time, she was also given the responsibility to support and educate her younger sister and her youngest brother. Thus, she felt like she was given the role of a mother as they were only 11 and 6 respectively and she had to give them everything a parent gives including care, love and her unreserved attention. Ever since, Kibra’s home is home for children that need support, be it relatives or not.
After serving for three years in Dedo, Kibra applied to continue her education and was given the opportunity to study at Alemaya University for three years and earned her first degree. She then was assigned to work as a junior Agronomist for the research and development authority. Kibra’s ambition to further educate herself and serve more never ends. Thus, she applied to study for her Masters and traveled to Norway. Right before her travel, she got married to her best friend Dr. Mehari Redae. They have been married for 25 years now.
On her return from Norway, with her first Born son Haben, her former office was closed and she had to find another job. Thus, joined Reliefe Society of Tigray (ReST) an NGO, as Gender Officer. Only four months in her new position, she won FORD foundation’s scholarship for Gender and Environment. Working for ReST, she traveled to countries like China, Canada and USA. She attended various conferences on Gender and Development and gained ample experience in that area.
After three years of service to ReST, she decided to start her own consultancy company. All she wanted was to share her experience as Agronomist and a Gender specialist and to provide an unbeatable consultancy service as she noticed there was a gap in that sector.
However, before she enjoyed her new found passion and business for long, her body started showing Parkinson’s symptoms, which at that time no one including herself had any idea what was happening.
1998 was a year of extreme challenges as she had to see one physician after another, with no explicit result to her condition. Since there was no help in country, she had to travel to Jeddah for an MRI and general check up. Kibra was told MRI shows a muscle problem and was given medication for that although that did not help at all. Gradually, her movement was limited. Kibra stayed home mostly and the fact that she did not know what was happening became very stressful. That was the darkest time in Kibra’s life. She hated it when people came to visit and just throw their personal opinions about her situation without giving second thoughts to what she felt. Her only consolation came from her loving husband, their two children and her parents.
As there was no improvement but intensity of the symptoms day after day, Kibra and her family applied for medical treatment in the US. Kibra once again traveled to the US, this time seeking to find out what is keeping her from moving and doing her job and live a normal life. The doctors immediately knew it was Parkinson’s. Kibra remembers the relief she felt from knowing the problem even though that was the first time she heard about Parkinson’s. Problem identified is problem half solved.
That being the good news, the fact that Parkinson’s has no cure was devastating news to Kibra and her family. She searched and read everything about the disease. She couldn’t stop crying as she learned more about it day by day. First, she was really mad at herself for not knowing about Parkinson’s and its effect until that time. The rest of the world seems to know about it long ago and they are doing researches and working on making a difference for those affected. How sad for those who have no access to such information and access to treatment? That became her number one reason to explore more and gather available information about it and make it helpful to people who were less privileged.
Upon her return from the US, Kibra decided not to give in to her situation and tried to run small businesses from home. The first three attempts did not work but she did not give up! She started a traditional sauna service which earned her good profit and also got her connected with women farmers in Raya. She was very happy that she was able to help women farmers make money and her customers find quality service to improve their health. However, that nagging feeling kept her restless. She called a family meeting and discussed the issue that keeps her sleepless at night. She told them she wants to help people with Parkinson’s. If at all, any one of them comes out in public. KIBRA WAS the 1st PERSON with Parkinson’s THAT CAME OUT IN PUBLIC here in Ethiopia. Then, she and her family started laying out plans and strategizing the establishment of Parkinson’s Patients Support Organization – Ethiopia. (PPSO-E)
May 2011, PPSO-E was established with the purpose of supporting patients to find information and access to treatment with the fund from some donors.
Ever since, Kibra has been busy creating awareness about the disease and encouraging members to follow through their treatment. PPSO-E is now working with various FM radio stations and print media. Kibra is never tired producing the materials, giving interviews, speeches and bringing hope to the people with Parkinson’s.
The following are some of the services given at PPSO-E:
- Training and support to families of Parkinson’s Patients
- Counseling and treatment facilitation to Parkinson’s Patients
- Network of Parkinson’s Patients for experience exchange
- Organizes walks for awareness creation
- Supply of medicine to some of the patients as PPSO-E has very limited funding;
- Awareness creation to the nation through electronic media, print media, brochures and flyers (there was no any information on Parkinson’s in any Ethiopian language prior to PPSO-Es communication materials and Kibra’s efforts)
Kibra has so far translated four mini books that can be used as a reference into Amharic. All materials are for free distribution. Kibra says her condition is getting worse by the day but she is happy that she established PPSO-E. Her passion and commitment to the Patients with Parkinson’s is so strong. If she had to rest during the day due to one of the episodes of the disease, she works at night. She wants to give those people hope and share her courage to face Parkinson’s.
Kibra has been living with Parkinson’s for the last 17 years. She knows her condition is not getting better. However, she still does not want to give into Parkinson’s devastating nature. Her biggest challenge now is that most of the patients are very poor. She wants to find sustainable support for them. In her own words: “I don’t have time to think about death, although my situation is getting worse by the day, I have to work hard to bring sustainable income to the patients”
Let us fight Parkinson’s with Hope!
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