OUT OF AFRICA

Let me tell you a story.

A couple of years ago a friend of mine with Parkinson's was travelling through Morocco. We'll call him Sam but that's not his real name. Sam's trip took him, his travelling companions and Abbas, the guide, from Marrakesh in the north of the country, via country roads over several days to the south. Each night they stayed with a local family in one of the many villages along the route. They would be given food and wine, exchanging stories through Abbas often long into the night.

In one such house, they were received by Omar, and his wife Saima, both in their late fifties. As the conversation flowed over couscous and harira Saima became progressively more agitated and stared at Sam. Sensing Sam's discomfort,  Abbas spoke. She had noticed his tremor and wanted to ask him about it but did not wish to offend. "No problem" said Sam.

She asked him many questions. How old was he? Did the medicines help? All the usual stuff. Eventually Saima fell silent. In a whisper barely audible over the crackle of the fire she said "I have son with same. Kamal".

"Here?" asked Sam. She gestured to a low door near the kitchen. In a small iron bed, no more than a shadow in the darkness, was Kamal. He could hardly move other than to shake. The bed smelt bad. Kamal tried to force a smile but no words came out. Through the woman and the interpreter, Sam learnt that Kamal had been diagnosed three years earlier. "But why is he so unwell?" he asked. The woman looked down, embarrassed. "We have no medicine" she said, "no help".

And that is the crux of the problem. We, in the West, take so much for granted. Our health is assessed regularly. We see general practitioners, neurologists, movement specialists. Many of us see physiotherapists, Parkinson's nurses, speech therapists and more. We take exercise classes, boxing, Tai Chi. We run, we bicycle, we dance. And all of this is underpinned by a battery of drugs to keep ourselves as healthy as possible.

It's easy to forget that in many other countries, none of the above applies. There are barely any doctors and next to no medicines. Without treatments, not surprisingly patients do much less well. Parkinson's symptoms, left untreated, are more debilitating. The kind of issues that apply in the first world, are irrelevant here. In the West, we seek to thrive. In the Third World, it's a struggle simply to survive.

So let me tell you a second story. Bear with me, it'll make sense.

And let me introduce to Omotola Thomas, a young and vocal Parkinson's advocate, originally from Nigeria. "In Nigeria, a month's supply of L-dopa can cost as much as the rent" she says. Access to treatment is therefore highly dependent on socio-economic status. Many, like Kamal in Morocco, simply cannot afford treatment.

In 2017, Omotola was in New York and met with Eli Pollard of the WPC. They talked about the different perspectives in the US and Africa. Omotola shared some of her dreams and visions, some simple others more complex. Often these issues were logistical – support for a program and the wherewithal to turn that idea into reality on the ground. It needs several pieces to fall into place for things to truly happen.

"Let me introduce you to somebody" said Eli, swiftly drafting an email to Njideka Okubadejo, professor of neurology at Lagos University medical school. But more than a clinic based neurologist, Okubadejo has a phenomenal knowledge of the Parkinson's landscape in much of Africa. Over the next couple of years the two women talked extensively by phone and email, sowing the seeds of collaboration. The first two pieces in the jigsaw.

Then in the middle of last year, Omotola found herself, along with 3,000 others, in Kyoto for the fifth WPC meeting. It was overwhelming. The breadth of representation, of expertise and knowledge. One particular component of the meeting proved pivotal. It wasn't even on the programme. But several people with Young Onset Parkinson's Disease (YOPD) has expressed the desire to meet up as a group and chat. At the instigation of Anders Leines and Heather Kennedy, a room was found and around 30 YOPD patients met.  No agenda, no plans, just an opportunity to talk.

Prof Okubadejo (right) receives more than 300 boxes of Sinemet.

At the end of the meeting, Omotola was approached by a softly spoken young woman. "Are you Nigerian?" she asked. It turned out that the young woman, Farah Shour, and her husband Khodor, both Lebanese, had been born in Nigeria. Khodor, along with Farah had, two years  earlier, been helping patients with multiple sclerosis and Parkinson's in the Lebanon to get the medicines they needed. Both had a fondness for the country of their birth and asked Omotola if they could help. Two more pieces in the jigsaw.

Further discussions in London shortly afterwards helped to turn the plan into reality. Through the Farah Foundation, set up by Farah and Khodor, Parkinson's patients in Nigeria, selected by Professor Okubadejo on the basis of clinical need, would receive medication. It was Omotola's dream come true.

The first patients received their medication in October, four months after that conversation in Kyoto. The second batch shipped in March. "Quite a string of coincidences" I said to Omotola. "Yes" she said. "Who would believe it".

Postscript: back in the Moroccan desert.

Sam slept fitfully that night, unable to shake off the image of Kamal, frozen and unresponsive. As the desert sun rose the following morning, he passed a small envelope to Abbas with instructions. Presently Saima appeared and started to prepare breakfast.

Then sounds from Kamal's room. They turned, just as the door opened and Kamal stood in the frame. Slowly he walked forward towards his mother, his arms outstretched. He smiled, a little strained at first, but then wider. Saima shook with emotion. Kamal spoke a few words and she burst into tears. Of joy.

"What did he say?" Sam asked Abbas.

"He asked her if she wanted to dance".