Uganda: Pills for Patients with Parkinson’s
Donation protected
Please help make life more bearable for Ugandans with Parkinson’s disease!
Parkinson’s Disease is a cruel disease. Our brain cells lose their function over time and ultimately die. It robs us of our ability to move properly and to do things and can even make it difficult to eat and speak, alongside a whole variety of other things, such as anxiety, depression, pain, urinary problems, sleep issues.... Left untreated, patients will eventually be unable to move and can become bedbound.
There is no cure for Parkinson’s. The main treatment, which can help reduce these symptoms, was developed 50 years ago but many around the world still cannot access it, including Uganda. But there is hope!
I have been living with Parkinson’s since I was diagnosed 6 years ago, but I am fortunate in that I have access to treatments and therapies which can help manage my symptoms.
Nyiransaba’s story
Nyiransaba* has had Parkinson’s Disease for several years but she had never had any treatment. Medication and exercise therapy enable patients to become less stiff and to move more easily but without it, Nyiransaba can now hardly move.
The family live in Kisoro, in the south west of Uganda, many miles from the capital, Kampala, and they cannot afford to pay for medication, called Sinemet, which is only available in Kampala.
Parkinson’s Si Buko
Hannington is one amazing guy! His mother died with Parkinson’s some years ago and he has witnessed first-hand the problems caused through lack of treatment. Hannington, though not a health care professional, is seeking to change this for other Ugandans.
Hannington began on his own but now has the help of two nurses, and with outside support and oversight from the USA, he has formed Parkinson’s Si Buko, a Registered Organisation. ‘Parkinson’s Si Buko’ means ‘Parkinson’s is not Witchcraft’ which is what many in Uganda think Parkinson’s is, or some may think that it is infectious (it isn’t). There is a lot of stigma around Parkinson’s, and many patients are left alone.
Hannington and his team seek to educate the public about what Parkinson’s is and thus remove the stigma of the disease. They seek out patients with Parkinson’s, advise on exercise and start on treatment, if funds are available. They also educate health care staff about symptoms and care.
Hannington and a nurse travelled 10 hrs by bus to visit Nyiransaba. After assessment, she was started on medication, paid for by a donor. She was given some physio and the family were shown how to care for her. Hannington will return in December to see how she is progressing.
Update: Nyiransaba's Parkinson's was fairly advanced. Sadly, several weeks after starting treatment Nyiransaba died, but she was more comfortable for those few weeks.
Hannington and Lydia stayed for three days and were able to see several other patients, none of whom are on treatment but with your help we can provide it!
This is the first time that people living with Parkinson's in the Kisoro area have received visits from people who can help them.
Why am I doing this?
As a neonatal nurse, I worked in a Children’s Medical Centre in Kisoro for six years and it was while I was there that I was diagnosed with Parkinson’s, hence my desire to help.
We want to enable these patients, and others, to start on medication, and the earlier someone starts on medication, the better, as they will be able to function well for longer.
Please give what you can!
Every little helps... here’s what your donation could pay for:
· £4 ($5.5) a meal for a team member when out visiting patients
· £12 ($16) one night’s accommodation for a team member
· £15 ($20) tablets for one week for someone with mid-stage Parkinson’s
· £60 ($80) one month’s tablets for a patient with advanced Parkinson’s
Parkinson's Si Buko is a Registered Organisation in Uganda and is applying to become an NGO. In the USA, Parkinson’s Si Buko is applying for charitable registration. Your donations will be transferred to a standalone account in my name and then transferred to the Parkinson Si Buko account in Uganda.
Please share across your social media channels #Pills4Parkinsons_Uganda
Wacoze cyane! Thank you very much!
Rosie
https://parkinsonssibuko.org/
https://www.facebook.com/groups/642193476238494
*not her real name
Parkinson’s Disease is a cruel disease. Our brain cells lose their function over time and ultimately die. It robs us of our ability to move properly and to do things and can even make it difficult to eat and speak, alongside a whole variety of other things, such as anxiety, depression, pain, urinary problems, sleep issues.... Left untreated, patients will eventually be unable to move and can become bedbound.
There is no cure for Parkinson’s. The main treatment, which can help reduce these symptoms, was developed 50 years ago but many around the world still cannot access it, including Uganda. But there is hope!
I have been living with Parkinson’s since I was diagnosed 6 years ago, but I am fortunate in that I have access to treatments and therapies which can help manage my symptoms.
Nyiransaba’s story
Nyiransaba* has had Parkinson’s Disease for several years but she had never had any treatment. Medication and exercise therapy enable patients to become less stiff and to move more easily but without it, Nyiransaba can now hardly move.
The family live in Kisoro, in the south west of Uganda, many miles from the capital, Kampala, and they cannot afford to pay for medication, called Sinemet, which is only available in Kampala.
Parkinson’s Si Buko
Hannington is one amazing guy! His mother died with Parkinson’s some years ago and he has witnessed first-hand the problems caused through lack of treatment. Hannington, though not a health care professional, is seeking to change this for other Ugandans.
Hannington began on his own but now has the help of two nurses, and with outside support and oversight from the USA, he has formed Parkinson’s Si Buko, a Registered Organisation. ‘Parkinson’s Si Buko’ means ‘Parkinson’s is not Witchcraft’ which is what many in Uganda think Parkinson’s is, or some may think that it is infectious (it isn’t). There is a lot of stigma around Parkinson’s, and many patients are left alone.
Hannington and his team seek to educate the public about what Parkinson’s is and thus remove the stigma of the disease. They seek out patients with Parkinson’s, advise on exercise and start on treatment, if funds are available. They also educate health care staff about symptoms and care.
Hannington and a nurse travelled 10 hrs by bus to visit Nyiransaba. After assessment, she was started on medication, paid for by a donor. She was given some physio and the family were shown how to care for her. Hannington will return in December to see how she is progressing.
Update: Nyiransaba's Parkinson's was fairly advanced. Sadly, several weeks after starting treatment Nyiransaba died, but she was more comfortable for those few weeks.
Hannington and Lydia stayed for three days and were able to see several other patients, none of whom are on treatment but with your help we can provide it!
This is the first time that people living with Parkinson's in the Kisoro area have received visits from people who can help them.
Why am I doing this?
As a neonatal nurse, I worked in a Children’s Medical Centre in Kisoro for six years and it was while I was there that I was diagnosed with Parkinson’s, hence my desire to help.
We want to enable these patients, and others, to start on medication, and the earlier someone starts on medication, the better, as they will be able to function well for longer.
Please give what you can!
Every little helps... here’s what your donation could pay for:
· £4 ($5.5) a meal for a team member when out visiting patients
· £12 ($16) one night’s accommodation for a team member
· £15 ($20) tablets for one week for someone with mid-stage Parkinson’s
· £60 ($80) one month’s tablets for a patient with advanced Parkinson’s
Parkinson's Si Buko is a Registered Organisation in Uganda and is applying to become an NGO. In the USA, Parkinson’s Si Buko is applying for charitable registration. Your donations will be transferred to a standalone account in my name and then transferred to the Parkinson Si Buko account in Uganda.
Please share across your social media channels #Pills4Parkinsons_Uganda
Wacoze cyane! Thank you very much!
Rosie
https://parkinsonssibuko.org/
https://www.facebook.com/groups/642193476238494
*not her real name
Organizer
Rosie Brown
Organizer