An interview with Hiih Mbe Hilaire Roger from Parkinson Cameroun on October 24, 2023 by George Ackerman, Ph.D, J.D.
I am 50 years old. I have 3 children 2 boys and 01 daughter I was diagnosed Parkinson’s in 2013 l am the founder of unique Parkinson support group in central Africa named PARKINSON SUPPORT GROUP CAMEROON
Please tell me a little about your background.
As for my story, I was in another life as an executive in the hotel industry. I was diagnosed at the age of 39. I am responsible for my three children because their mother left home shortly after the diagnosis no longer seeing a future in our company stigmatization.
Can you tell me more about your advocacy?
I had to stop work because of motor problems and tremors, I’m out of work. I faced several difficulties accessing medications, access to caregivers and societal. This is what motivated me to create a support group for sick people from my country.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
Since I encountered a lot of difficulty, I wanted to create a support group to protect other patients from the same suffering.
What type of goals do individuals with Parkinson’s have when seeing your advocacy?
To date, Parkinson’s disease is gradually emerging from the beaten track. because she was a victim of societal stigma and Parkinson type legends equal witchcraft because of our awareness-raising actions, public authorities and the media were interested and among the public the views changed shortly after.
What type of training and how long are the programs?
Everything is difficult and complicated in Africa. There is no treatment program for Parkinson’s patients. who is pulling the devil by the tail for their survival? There is no support system for support groups. However, we come together to find partners with major associations such as France Parkinson who provide us with brochures and materials for my training and awareness actions.
What effect can your advocacy have on an individual with Parkinson’s?
already, the fact that I am sick, and an actor is a fact very reassuring for the sick. since in Africa Parkinson’s disease is victim of prejudice and stigmata which has the dangerous consequence the withdrawal into oneself of the sick and of his caregivers
What would you like to see as a future goal for your advocacy?
the purpose of my plea for Parkinson’s benefit is to get most patients out of withdrawal through gratification actions because many cannot afford medicines.
What events do you participate in?
Every year we dedicate a lot of actions during Parkinson’s disease celebration day. Since the access roads with the sick are difficult to trace (unpaved road) and most of them have no means of transport, which makes gatherings difficult. Most patients do not have a smartphone, which makes virtual meetings difficult (zoom meeting) generally.
How does your advocacy also assist caregivers?
We put the caregiver at the center of our awareness, and we have set up a specialized unit for the care of aides (UDA Helpers Universe) because the more the caregiver understands what is suffering his patient the better the patient is doing.
How can someone get in touch? What is your website?
PARKINSON SUPPORT GROUP CAMEROON
TEL: +237 656478340
Facebook profile: https://bit.ly/3esBM1C
Facebook page: http://bit.ly/37StgAa
Twitter : http://bit.ly/348f9Fn
How can others also become advocates for awareness?
Advocating for a cause is an individual decision and requires a lot of motivation. However, many people are interested to our activities, and I think that the succession will be assured.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
My final words are the following: if the disease of Parkinson’s makes the difficult daily life for an African it’s hell since the patient must fight daily for his survival since no support program is not put at his disposal, access to caregivers who are rare and appointments are expensive complicates even more, I have 18 patients in the association, we all know what happened when you pass a me without treatment, we are a united community by the same disease, we find a solution.