I choose to speak up about Parkinson's disease!
I choose to speak up about Parkinson's disease!

Parkinson’s Disease occurs when certain nerve cells (neurons) in a part of the brain die or become impaired. These are the cells that are responsible for the production of dopamine, the chemical that pilots the brain‘s reward and pleasure centres. It is Dopamine responsibility to signal that part of your brain that is responsible for movement. So when you raise your hand or move your leg or head, dopamine is at work. The smooth mobility of your muscles owes it to dopamine.

With Parkinson’s disease, there is not enough dopamine produced hence mobility is impaired.

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 Parkinson’s is progressive, which means it gets worse over time. But usually, this happens slowly; over a period of many years. There is no known cause for Parkinson’s disease and no known cure.

My first encounter with Parkinson’s disease was when my father was diagnosed in 1994. He lived with the disease until His death in 2010. He was bedridden for the last 6 years of his life.

At first, we did not really understand what was happening to our dad, since we noted that he was getting slower each day. Relatives and neighbours came up with a story that he had a stroke and some even attributed the disease to witchcraft, blaming it on my mother. That is hard for any family. It is even harder when deep inside you-you know witchcraft is innocent and your voice is lost in a sea of insane beliefs. Your father meanwhile is slowly drifting. You want to be there, to have a solution for your dear father, but you don’t because even the national systems have not been helpful enough.  Powerlessness can make you ill.

My father finally explained to us through a family friend that he had been diagnosed with Parkinson’s disease after a lot of misdiagnoses. He also explained what to expect as the disease progressed.

Even when my father would be there, I missed the old vibrant man who gave us his all. He took us to what he considered the best schools and he personally picked and dropped us every day. My father played the silliest of games. To us, his children, he was the best father that God gave us. Games like hide and seek, racing, tag(hicho) and piggyback rides were an all-time favourite. He loved travelling and he took us on long road trips that were often surprises. He threw the biggest birthday parties for us. Our childhood was full.

Watching him slowly lose himself was daunting. From a man who had it together, organised, playful, provider to a man who needed help even to eat, dress, walk, talk. We had to modify most areas in the house to ease his movement.

Lack of basic training, for us, on home caregiving made taking care of him an uphill task.

Information About Parkison’s Disease

During this time I spent a lot of time looking for information about the disease in Kenya and also on the internet. That is when I realized that there was lack of information locally. The only information available was from the internet and from organizations abroad. The disease drained us financially and emotionally. There was no one with the same disease to share with about our experience or compare notes with. It is like walking in the dark.

After my father’s death in 2010, I made a vow to myself that no other person must suffer our fate. Lack of information in this day and age is inexcusable. I felt a need to fill this gap by creating an organization that will not only avail information about Parkinson’s disease but also support patients, families and caregivers.

I founded Africa Parkinson’s disease foundation in the year 2012. It is the first and only organization that supports people living with Parkinson’s Disease, their families and caregivers. The main objective of the organization is to educate and create awareness & understanding by providing access & links to the latest developments in research on Parkinson’s disease.

One of the biggest challenges in relation to Parkinson’s Disease in Kenya are low or no access to neurological care due to low number of neurologists (less than 15 neurologists in Kenya), narrow spectrum of available treatment options and medications, Stigmatization – owing to the fact that there is no known cause of the disease. Most people associate it with witchcraft and curses.

What You Should Know about Parkinson’s Disease

 

 

 

 

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