Here in the UK, those of us living with Parkinson’s have access to a variety of healthcare professionals, medication, exercise, and other therapies. By comparison, many people living with Parkinson’s (PwP) in Uganda, and elsewhere, can’t access medication and know nothing about exercise. Many won’t even know that Parkinson’s is what their symptoms are as any doctor or nurse they might have seen probably didn’t know either and they certainly won’t have seen one of the very few neurologists.
I attended Fighting Fit in 2019 and have been helping to facilitate weekends ever since. So, why am I writing about Parkinson’s in Uganda? I am a retired nurse, living in the UK, but I lived in Kisoro, SW Uganda for several years during which time I was diagnosed with Parkinson’s (via pre-Zoom telemedicine), about 6 years ago now.
Parkinson’s Disease in Uganda
The incidence of Parkinson’s is increasing globally; in countries like Uganda, it is partly due to people living longer and therefore more likely to develop symptoms. As awareness spreads, and as technology use increases, more people will seek help. Levodopa, in the form of Sinemet, is only available ‘privately’ in Kampala but is not yet available through the state health system. The policy is that there need to be 1,000 identified patients before medication specific to a particular condition is made available.
There is a lot of stigma surrounding the ‘strange’ Parkinson’s symptoms, it is often thought the symptoms are due to witchcraft or the person is infectious, which can lead to them being abandoned by their family and shunned by their neighbours.
Parkinson’s Si Buko
Through my connections in Uganda and the power of social media, I have become involved with Parkinson’s Si Buko, which means Parkinson’s is not Witchcraft, based in Kampala and with links to the USA.
Parkinson’s Si Buko (PSiB) is a grass roots Community Based Organisation whose remit is to “Dispel Myths and Inform Facts, Train Health Care Professionals, and Secure Access to Resources for Patients”.
PSiB was set up by Hannington Kabugo, though he is not a healthcare professional. His mother had PD symptoms from when Hannington was small, his father made them all abandon her, but he used to visit occasionally and eventually realised that what she had had was Parkinson’s. Hannington doesn’t want others to suffer like his mother, and so he started to learn about Parkinson’s and tell others.
Hannington and his small team initially received training from a neurologist and physios from America. They could then start training healthcare staff, diagnose Parkinson’s in patients and prescribe Sinemet, demonstrate exercises – particularly important if Sinemet is not available, and spread awareness in the community. They have a small clinic in Kampala which provides some income.
Pills for Parkinson’s Uganda
When I realised there was no care for PwP’s in the Kisoro area, I launched ‘Pills for Parkinson’s Uganda’ to provide funds to enable them to access basic treatment. Kisoro is some 8-10hs by road from Kampala, and Hannington and his team have now had several visits to Kisoro.
Working with the doctors from the two main hospitals in Kisoro, the PSiB Team have been able to train some 70-80 health care staff – doctors, nurses and village health team personnel. Training covers what PD is, and is not, how to diagnose Parkinson’s and assess need for Sinemet, the need for exercise and which exercises, how to obtain Sinemet.
Invitations were issued, via radio and churches, for people who were displaying Parkinson’s-type symptoms to attend a one-off clinic, where they were given a general check-up and assessed for possible Parkinson’s.
Those who had been diagnosed were then visited in their homes, their care needs assessed and discussed with their families. They have all been taught about Parkinson’s, shown exercises to help manage their condition, and most have been started on Sinemet.
The communities where they live have been told that Parkinson’s “is a science not a curse, or witchcraft, nor is infectious, so they shouldn’t mistreat, neglect, abandon or isolate anyone diagnosed with Parkinson’s”.
The patients will now be managed via the hospital teams, overseen by Hannington and PSiB, who will also buy the Sinemet.
Pills for Parkinson’s Uganda has funded all this but there is an ongoing need to seek out more PwP’s, provide Sinemet until such time it is available for free, or at reduced cost, in Kisoro, and train more staff.
If you would like to find out more see:
When Life Gives You Parkinson’s podcast to hear Hannington tell his story.
PSiB website https://parkinsonssibuko.org/
PSiB Facebook https://www.facebook.com/groups/642193476238494
If you would like to make a donation please see Pills4Parkinsons_Uganda Go Fund Me
Rosie Brown