Parkinson’s slowed down my once robust life into a crawl

Roger William Reeve, Parkinson's Disease survivor during the interview at their Kirichwa road apartment in Nairobi on November 17, 2020. [Samson Wire, Standard]

Until my retirement five years ago, I worked as a civil engineer, traversing Africa, and the rest of the world for work. My job offered me a rare opportunity to visit several relatively unknown countries that most people have never been to. My visits would last between two and three months each time and so in most cases, I travelled with my family.

In 1997, I travelled to Malawi for a construction project. That was the first time I received an indication that something was off. As I walked between the offices, I felt tremors in my feet.

I visited a doctor immediately I returned to Nairobi, but he was unable to identify what was ailing me. I went to another doctor at The Nairobi Hospital, who diagnosed me with Parkinson’s disease. The doctor enlightened me on the disease but said that I did not have any of the other commonly associated symptoms.

After the diagnosis, my condition gradually deteriorated.

With time, I began feeling mentally fatigued. I also started experiencing concentration difficulties, and could not write properly. I made technical mistakes more easily, especially since I could not concentrate on technical tasks. My memory also became poorer. Like right now we have a new housekeeper, but for the life of me I cannot remember what his name is. I have to sit and think for a while before I can recall it. This is just one way my memory has been affected.

Physically, I lost control of my feet. If I walk around the room, I have to hold onto objects to maintain my balance. My fingers often experience tremors. My handwriting changed too. And it got worse until it became almost illegible.

 The more my condition deteriorated, the more the effectiveness of the medication I was on dwindled.  As a result, my dosage has increased over the years, from one tablet a day to a time where I was taking nine tablets each day. Now I take two tablets a day.

Luckily, the firm I worked with assigned me a car and driver. I don’t think I would have managed otherwise. I maximised the time I spent in the office and minimised my time on site, which enabled me to get through work without any incidents. 

Sometimes, when I needed to look and feel extra sharp, I would increase my dosage. There was a day I had to deliver a project presentation to the World Bank. I took two extra tablets so they wouldn’t see me as incapable of continuing with my duties. Was that wise? Probably not. But it was a very stressful time because the people I was presenting to were all senior to me and expected me to have all the answers. However, I struggled through and managed. In fact, in hindsight, if I could have known how well I would perform, I would have done another project before retiring.

Expensive little pills

But taking pills can be challenging. Sometimes the medicine expires before the expiry date written on the package, or I react to the ingredients. There was a time the medicine was wearing me out and worsening my condition, so I switched to a different one. We don’t like to waste the tablets because the cost is quite high, but the advantage is that they work.

You, however, have to know that the medicine is just a therapy, not a cure. The medicine merely alleviates the symptoms.

Managing Parkinson’s disease is expensive. I take two types of medication; one costs Sh80 a tablet and the other goes for Sh78 per tablet. I also need to see my doctor once every six weeks. In a year, I spend around Sh1 million out of my pocket managing my condition. Insurance companies don’t pay for any costs to do with Parkinson’s disease. I had company insurance before I retired but it did not extend to Parkinson’s. Plus, once you are over 70 you get a lot of trouble getting insured.

My life has changed a lot over the past few years. I stopped driving soon after my retirement. I have also developed more dependence on my caregiver, my wife Schola Reeve. I can do most basic activities, but some, like taking a shower, are risky. We have had to adjust a lot in our life, including our finances. My wife can no longer work as much as she used to because she is my caregiver.

I have also had to give up a lot of the activities I enjoyed. One of my hobbies is bird watching. I used to go out into the bush with my binoculars to watch birds, but it’s impossible now since I have walking difficulties that hinder me from getting far.

Creating routine

I live my life along routines. I find that it is the best way to manage Parkinson’s disease. I take my medicine on strict timelines and go for walks every day, for 15 minutes to an hour, depending on the location.

I am part of the Parkinson’s Support Group, Kenya. It comprises patients of all ages. Before the Covid-19 pandemic, we used to meet once every month. The meetings assure me that I am not alone. I get to know that there are other people living with the condition. However, we do not necessarily share the same experience. It is different for everybody.

One of the biggest challenges of Parkinson’s is the stigma. Sometimes I visit a place and people wonder why I am trembling or why my wife is helping me to stand. Some people simply think that I am drunk.

The government should know that Parkinson’s disease is there and it affects many people in Kenya. The government has to create awareness.