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In August 2005, I began a teaching and research job at North Tyneside Hospital with the aim of carrying out a Parkinson’s disease prevalence study in Tanzania.

It was to be an interesting “break” from my registrar training in elderly care, but little did I realise that it would entail learning how to drive a four wheel drive car in the rainy season up the side of Mount Kilimanjaro, changing tyres many miles from help (for the first time in my life), battling with cockroaches, geckos and large spiders, not to mention the mosquito bites, malaria tablets, intense heat and an absence of both water and electricity for long periods! Needless to say it was a challenging but hugely rewarding experience and allowed me to meet some remarkable people.

Parkinson’s disease did not make it into the Millennium Development Goals. It is not a priority for Bill Gates and most local people (doctors included) have never heard of it before. Previous studies in the late 1980s and early 1990s suggested that it was uncommon in sub-Saharan Africa, and little further research has been conducted. Neurology in general and chronic diseases appear to have been somewhat overlooked when set against the battle against malaria, HIV/AIDS and other infectious diseases. This unfairly suggests that it is not a problem in developing countries. Hopefully this article will indicate otherwise.

In Tanzania there are two consultant neurologists based in Dar-es-Salaam for a population of 37 million people. In the Hai district, where I was based, the tertiary referral hospital, Kilimanjaro Christian Medical Centre (KCMC) covers a referral population of 6 million people. There is one PD nurse specialist in Tanzania (trained in preparation for this research project), who may be the only one of her kind in the whole of sub-Saharan Africa. The occupational therapy department had seen one case of PD in the past 5 years and the physiotherapy department only two. So it’s fair to say that multidisciplinary services for PD have yet to become established in this part of the world and existing therapists have little previous experience of PD patients.

We carried out a prevalence study in the Hai district, with a population of approximately 160,000. A door-to-door census and 6 question screening questionnaire was carried out by trained enumerators who had previously been involved in research with Dr Richard Walker and a project entitled the Adult Morbidity and Mortality Project. Anyone who answered positively to any one of the screening questions was then visited at home to have a thorough history and examination by the nurse specialist, Oliva Msuya and myself. We also found cases through following up possible positive family histories, by reviewing medical records at the local tertiary referral hospital from the past 5 years using ICD 10 coding for PD and by asking local village elders to inform us of anyone else in their village with a tremor or gait disturbance. We also reviewed cases seen in a neurology outpatient clinic by a visiting Irish neurologist and searching for those from the Hai district.

Many of the PD patients we found had visited traditional healers about their symptoms, and some had been seen at local hospitals or health centres, but not diagnosed. Some patients had not sought help at all, despite having a significant symptom burden. Our patients had interesting beliefs about their symptoms with some interpreting them to be a normal feature of the ageing process and others frightened that they had fallen foul of evil spirits or witchcraft. One villager told us that it was widely believed that anyone with a tremor abused alcohol, therefore patients would go to great lengths to try to hide their problems. Another villager felt that a lady with PD would not wish her symptoms to be seen as it would lead to problems in finding husbands for her daughters as they would believe it was inevitable they would develop the same problems.

The vast majority of patients had not previously been diagnosed and very few were on any treatment. A continual supply of medication is extremely difficult, as levo-dopa is not often stocked in pharmacies, it is expensive compared to many other drugs (50 times more expensive than bendroflumethiazide) and most patients living in rural areas have poor access to such services. Two of our patients were fortunate to have relatives who could travel to collect their supplies, but one patient informed us that he had to resort to “importing” medication from Dar-es-Salaam (8 hours’ drive away), Nairobi (5 hours drive) or Kampala (at least one full day’s travelling), the last two with tricky border crossings. Even if the local pharmacy has levo-dopa, it could be in nearly any formulation, so at times patients are given 275mg tablets when they are only meant to be taking 62.5mg or controlled release preparations which they continue to take the same number of times per day. This inevitably leads to poor adherence to medication because of unpredictable side effects and variable therapeutic benefit. The biggest problem however is poverty, and most patients who had had treatment at any time had rationed doses to make the prescription last longer or had run out for several weeks, or even months. Only two of our patients had any form of follow up.

We now face the difficult task of trying to supply these patients with medication. Physiotherapy has been initiated and a baseline speech therapy assessment has been performed.

We believe that it is possible to safely supply and monitor life long treatment for our patients, with the assistance of our local nurse specialist. The bigger question is how many other patients exist, as after all, this is only one small corner of Tanzania, and we have no reason to believe the situation is any different in the rest of the developing world. By developing and delivering such a service to this small group of patients, we hope to design a template which could be used in other areas. We also hope to raise awareness of the disease, dispel the myths surrounding it, and to provide further teaching for neurologists and junior medical staff in this area.

Catherine Dotchin