Going on an African adventure with Parkinson's

Primary school teacher Janet Kerr visited a rural village in Malawi in summer 2018 to help start up a charity literacy programme. She discusses how her Parkinson’s inspired her to go, and what challenges she faced during the trip.

Before being diagnosed with Parkinson’s in 2016, Janet says she would never have dreamed of making an international trip by herself. Her husband, Gary, arranged all of their holidays and she felt she wasn’t a good traveller. Working as a primary school teacher in Lochgelly, near Dunfermline, left her feeling exhausted most days.

“Since my diagnosis I’ve decided I’ve got to grab life with both hands,” says Janet. “My whole attitude and my whole outlook has changed.”

Preparing for A Malawian adventure

A local charitable foundation asked Janet’s school if they could send some teachers out to a partner school in Malawi to plan a literacy programme. Janet and 2 of her colleagues volunteered.

“When the headteacher picked me, she knew I had Parkinson’s, but I did have to get a doctor’s letter confirming that I was ok to travel. I was a wee bit scared – I’m not going to lie. I knew I was going with other people, but I didn’t want to be a burden. I didn’t want them to feel that they had to look after me.”

Knowing that she would need to be feeling at her absolute best to cope with the trip, Janet had her Parkinson’s medication assessed.

“Sometimes my medication wears off and I have to get it upped. I take it once a day and it’s a slow release tablet. I had got all that done just a few weeks before I went, so by the time I got out there I was riding a wave of the effects of the higher dose. I felt in a good place. I do a lot of things myself to combat the symptoms as well. I do a lot of fitness.”

Getting to Malawi to teach

Despite usually only sleeping for around 4 hours a night, Janet says she is full of energy and always on the go. This stood her in good stead for an epic 48-hour journey to the village of Karonga. After several flights totalling more than 20 hours and a 3-hour wait at the airport, Janet and the group embarked on the final leg of their journey – a 10-hour overnight bus journey.

“People were crammed on that bus – all the way up the aisles. Gradually people started collapsing to the floor because they were just so exhausted. I was feeling quite good, and a lot of the time I need to stand up and walk about anyway, so I gave up my seat for the last 3 hours.”

If I had the chance and as long as I was feeling well enough, I would definitely do a trip like this again. It made me realise I could travel anywhere now.

Initially the plan had been for the group to sleep on mattresses on the floor of one of the schools. So they were very relieved to be told on arrival that they would be staying in Karonga’s only bed and breakfast!

Janet spent 2 days visiting schools, observing classes, and even teaching herself if she was offered the opportunity. Although only a short visit, it was enough time to get a feel for the school, the community and particularly for the hardship the children experience. Most of the children don’t have shoes, and what look like smart school uniforms from a distance are actually threadbare hand-me-downs.

“It was very humbling and a bit of an eye-opener to be honest with you. In 1 of the classes there were 190 children in a classroom. These classrooms are like buildings from a war zone. I did a couple of lessons on Scotland, the geography of Scotland and Scottish food. Me and another teacher tried to teach the children how to do the Dashing White Sergeant [a Scottish country dance], and they, in turn, shared their culture with us.”

Managing Parkinson's during the trip

To ensure that her Parkinson’s didn’t stop her from fully participating in the trip, Janet tried to keep up her normal routine. She took along her yoga mat so that she could stretch to ease the soreness and stiffness she gets in the mornings.

“I don’t do any convoluted poses, just a few sun salutation sequences for 10-15 minutes to lubricate my joints. And it helps immensely. I have to start my day like that, whether I’m in Karonga or Lochgelly.

“One thing I found really hard was that the people in Karonga don’t really drink or eat during the day. I normally eat every few hours and I drink water all day, every day. So although I had a bottle of water in my bag, I couldn’t drink it because there were always children and teachers around. I knew that these children had possibly not eaten breakfast.

“I took some breakfast bars with me, so I would sneak a bite of one when I could, just to top me up. I’m hypoglycaemic, so I do need to maintain my sugar levels. I would take a wee walk outside and take a mouthful.”

In fact, Janet managed her symptoms so well that she felt it was unlikely the community in Karonga would’ve realised there was anything wrong with her health. She wasn’t sure if they would be aware of or understand Parkinson’s, so she decided not to tell anyone about it.

“Because of the heat out there, no one noticed how slowly I walk, because everyone else was walking slowly too!

“I do have a weakness in my right hand, so I can’t write for a prolonged period. I taught some lessons but I had to ask another teacher to do the writing, because it was all on the blackboard. My tremor was starting, plus I couldn’t hold the chalk anymore, and my arm just wouldn’t do that writing movement. But I struggle with that in my own classroom at home. I usually have to pass over to the kids to be scribe. It’s just about adapting.

“It’s amazing how when you develop Parkinson’s, you can spot if somebody else has it. I call it my Parkinson’s radar. I did actually see a couple of gentlemen in the community that I thought looked like they had Parkinson’s, and 1 had quite a bad tremor. A lot of people there can’t afford medical treatment, so they’re just left to their own devices unfortunately. I was deeply saddened to see them and felt completely helpless, knowing that they may not be receiving any treatment. It made me appreciate how lucky I am.”

A love of travel 

Going to Malawi has definitely sparked a new love of travel in Janet and also given her a sense of control over her symptoms. She says that during the trip they were kept so busy that she often forgot she had Parkinson’s.

“If I had the chance and as long as I was feeling well enough, I would definitely do a trip like this again. It made me realise I could travel anywhere now. This was such an important mission, such an experience. I was on the trip because of the children and the good that we were doing, and that just superseded the fact that I had Parkinson’s. They were more important than what was going with me.”

Parkinson's can make holidays and trips trickier to manage. But with the right planning and adjustments you can still take on an adventure.

Find out more about planning a holiday when you have Parkinson’s