Hello, my name is Hiih Mbe Hilaire Roger. I'm 42 years old and I live in the Congo-Brazzaville. I started having resting Involuntary shaking of the hands, arms, legs, jaw or tongue. The typical Parkinson’s tremor is “pill-rolling” – it looks like holding a pill between thumb and forefinger and continuously rolling it around. Some people report an internal tremor, a shaking sensation inside the chest, abdomen or limbs that cannot be seen. Most Parkinson’s tremor is “resting tremor,” which lessens during sleep and when the body part is actively in use. when I was 31. Doctors tried multiple tests. Each one gave me a different diagnosis, Parkinson’s disease was one of them. I continued to work.
In 2010, I was working at a 3-star hotel in my country. One day, I was serving hotel guests beverages and had several glasses and bottles on a tray. My tremors caused all of the bottles and glasses to make a lot of noise. This started happening often and it embarrassed hotel management.
In 2012, I started having trouble buttoning my shirt, knotting my tie and tying my shoelaces. This movement disorder was overpowering the left side of my body. I had trouble going out in public and found it difficult to write. I then had trouble sleeping. I thought maybe I had a sleep disorder at the least, but I suspected Parkinson's disease.
In Africa, Parkinson’s disease is rare and has increasingly become stigmatized because when an adult that is not in his or her senior years has tremors and often falls, it is considered witchcraft.
In 2013, I met a neurologist who attended medical school in Russia. The doctor administered tests such as having me button up my shirt and tie my shoelaces. He tested my gait and posture along with other movement tests. At the end of my appointment, he prescribed me with Sinemet and confirmed that I had Parkinson’s.
Today, my problem in my country is isolation. There is no Parkinson's patients association or groups, so I find myself under a Parkinson’s spotlight. People often ask, “Mr. Hilar, why you work like that?” or “Why does your hand tremble?”
My experiences led me to isolate myself. One day I stumbled upon Parkinson.org’s My PD Stories. It helped me a lot to read the experiences of others.
Right now I am having trouble finding Sinemet. I miss a lot of doses when I can’t find it. My body suffers when it is coming off of it. Without it I get too many involuntary movements and even have difficulty brushing my teeth.
I would really like to have a Parkinson’s association here in Congo-Brazzaville to help me meet other people with Parkinson’s. It would save me from isolation and help me to find ways to help my symptoms. Africa has great difficulty in securing medications. People with Parkinson’s like me need to go to another country to get medications, which is very expensive.
I would really like to attend conferences to talk about my experience here in Africa in public, or go on TV or radio to help other people understand Parkinson’s better in Africa and drop the stigma that comes with it.