Hellen Mungai, 32, has fond memories of her childhood growing up in Kinoo, in the outskirts of Nairobi.
She particularly remembers her father’s whole-hearted dedication in raising her and her younger brother, Simon.
Her parents separated when she and her brother were young, and her father took full custody of them, though they later reunited when her father fell sick.
“My dad loved spending time with us, and would take us to school every morning, pick us up in the evening, and then return to work,” says Hellen, who adds that he was the kind of father who relishes getting down on his knees and playing childish games with his children. He particularly enjoyed chasing them around the house.
“He was quite active, and enjoyed outdoor games, but one of his favourite activities was chasing my brother and me around the house. He was a very energetic person,” she remembers.
One day, as father and children played, he tripped and fell, but instead of quickly getting up as he would have, he struggled to get to his feet, eventually asking his children to help him up.
After that incident, Hellen began to notice more alarming changes in her father, who was only 42 years then.
“He generally became slower in everything he did. He would take longer in the bathroom, drive slower, and he did not walk as fast as before. As days went by, he stopped playing many of the physically engaging games we often played, instead preferring to relax in the sitting room.”
Unbeknown to Hellen at that time, her father had been diagnosed with Parkinson’s disease, two years before this incident. Parkinson’s disease is a progressive disorder of the nervous system that affects one’s ability to coordinate movement.
With time, he was no longer able to walk or drive on his own, and his speech also became slurred, making it difficult for him to express himself.
By then, Hellen had completed high school, and was waiting to join the University of Nairobi, where she had been called to study Science.
While waiting to join the university, she decided to help out her father at his audit firm: “I wanted to be close to him,” she says.
“By then, he could not lift a spoon, so I had to feed him, as well as help him up and down the stairs.”
At home, Hellen and her brother would take turns helping their father dress, brush his teeth, and everything else he was unable to do on his own.
“It was a painful experience watching our father, our once strong and energetic patriarch, now unable to do some of the things that just a few years before, he had been able to do effortlessly. He was no longer the man we knew.”
When Hellen joined university, though she had looked forward to the freedom that is said to come with being a residential student, she choose to be a day scholar so that she could be near her father.
By then, he had stopped going to work since he was too weak. One of the activities she greatly enjoyed was reading books to him, just as he had done with them in their childhood.
“Many times as I read out to him, he would interrupt me and ask me to tell ‘those’ people to stop coming for him. He would order me to chase ‘them’ away. This terrified me, since I feared my father was losing his mind. However, I researched online, and found out that one of the side effects of the drugs he was taking was hallucinations.”
But that was not all. Because Parkinson’s disease affects the nervous system, there were those who assumed he was a drunk, due to the tremors in his hands, legs and his slow, unstable walk.
Since inactivity would have made his condition worse, Hellen would often take her father for walks with around the neighbourhood, besides taking him to hospital for reviews and check-up.
Several times, passers-by would make fun of her father, assuming that he had taken too much alcohol, something that broke Hellen’s heart.
“I was tempted to stop and correct them, but since that would not have been practical, I swallowed my sadness and moved on,” she says.
But what was even worse is the fact that some relatives linked his illness to witchcraft.
“Because of the loss of memory, the hallucinations, uncoordinated movements, the drooling and the slurred speech, people assumed he had been bewitched, but what hurt even more was that they did not bother to find out from us what was ailing him,” says Hellen.
At home, the Mwithaga family had to make adjustments to accommodate his illness.
“We remodelled the bathroom to create handle bars that he could hold onto, to prevent him from slipping and falling down as he had done many times before. We also created a special toilet for him with a raised seat, and got him an orthopaedic mattress to help him sleep more comfortably, and when he became bedridden, we had to buy him adult diapers.”
Hellen says the financial expenses of her dad’s condition took a heavy toll on their family.
“Most insurance providers don’t cover chronic or pre-existing conditions. All medical bills were paid from his personal savings. The tests, the drugs and other needs were very costly. He also had to see a neurosurgeon – every visit cost Sh3, 000. The adult diapers were also quite expensive,” she says.
Hellen describes each day as one filled with worry.
“As I watched him slowly degenerate, I would always ask myself how much more time we had with him. One of the things I fervently prayed about was that he would live long enough to walk me down the aisle.”
Dream come true
It therefore came as a great relief when in 2008, Hellen’s father witnessed her take her wedding vows to her husband, Zack Mungai.
“I cannot describe that feeling of having my father walk me down the aisle, and even though it was me pushing his wheelchair, it was a bitter-sweet moment for me, since one of my greatest desires had come to be.”
Her father, though bedridden by then, had mustered enough strength to sit on a wheelchair to witness his only daughter’s say ‘I do’. Even though he only managed to attend the church ceremony, Hellen was nevertheless grateful that it was he who had given her away.
Two years later, on 23 July 2010, Hellen’s father passed away peacefully in his sleep at home. He died on his 58th birthday.
In memory of my father
As her father’s disease progressed, Hellen did as much research as possible about the disease, but the only information she got was foreign-based.
“I also tried looking for a support group which we could join, but there was none. I also tried searching for a family in Kenya that was caring for, or had cared for someone with Parkinson’s disease so that we could learn more about it and be encouraged by our similar experiences, but I found none.”
This is what prompted Hellen to initiate a foundation through which she would help create awareness about the disease and bring together a Parkinson’s community.
In 2012 - two years after her father’s death, Hellen actualised her goal and registered the Africa Parkinson’s Disease Foundation.