“Incompetence, racism and prejudice delayed my diagnosis”
Women and Parkinson's
Author: Manon DayPublished: 23 January 2020
Prep: Cook: Serves:
It took a decade for Manon Day to be diagnosed with
Parkinson’s – with clinicians treating her as though she was a drug addict,
causing her to feel “mistreated” and “powerless”. She explains the role being a
young black woman played in her delayed diagnosis – and why “we need more
awareness to break the myths and stereotypes” around who the condition affects
My Parkinson’s symptoms started at the age of 17, but it
wasn’t until 10 years later that I was diagnosed with the condition, aged 27.
Over the years, I was living with uncertainty and was
worried about my physical state. At first, I struggled with low blood pressure
and I was fainting several times a week. Now, my symptoms include stiffness,
difficulty moving, speech problems, bladder dysfunction, fatigue and more.
When I was officially diagnosed with Parkinson’s in 2011,
I was overwhelmed and in shock – it had taken a decade to get the right
diagnosis. I knew for sure that Parkinson’s was going to change everything.
Women are less likely to be diagnosed with Parkinson’s
compared to men. Being a young black woman played a huge role in my delayed
diagnosis. The neurologists I initially consulted stigmatised me. They didn’t
believe me when I explained my symptoms: they thought I was a drug addict. I
was mistreated and my experience was horrible. It reached the point where I
became very ill and could not walk because my body was so stiff. Racism was the
cause of my delayed diagnosis and I felt powerless.
Due to incompetence and prejudice, I did not receive the
medical care that I so desperately needed. Every time the paramedics rushed me
to the hospital emergency room, the neurologists sent me back home right away.
Consequently, I felt distressed and abandoned by the healthcare system.
I changed hospitals and thankfully, as of now, I receive the best medical care and treatment at the Montreal Neurological Institute and Hospital. I have had an excellent response to levodopa and through medication, diet and exercise, I’m managing my Parkinson’s.
“It’s a devastating diagnosis to receive in the
prime of your life”
When I told my family about my diagnosis, they were stunned, as we thought that the condition usually afflicts the elderly. We started researching it intensely. Although my movement disorder specialist gave me lots of information about Parkinson’s, I had no knowledge about how the condition affects women in general – for example how I experience more symptoms of rigidity and slowness during my periods.
There were several challenges related to my young onset
diagnosis: I couldn’t pursue my studies in the field of translation, and I
chose not to conceive children because pregnancy is a risk to my health. In
addition to my Parkinson’s, I live with a second rare disease called acromegaly,
which I was diagnosed with in 2014. It’s a hormonal disorder that affects
approximately 2,000 people in Canada. It’s a damaging and incurable disease and,
as far as I know, I am the only person in the world living with both young
onset Parkinson’s and acromegaly.
Parkinson’s has also had negative effects on my hobbies and social life – it’s a devastating diagnosis to receive in the prime of your life when you are full of plans for the future.
“Parkinson’s doesn’t only affect old Caucasian
Generally speaking, women and people from minority backgrounds are underrepresented in the Parkinson’s research community. I am registered in a clinical Parkinson’s trial database called the Quebec Parkinson’s Network because I want to be involved and share my experience to advance knowledge in the scientific community. I think playing a small role can have a positive impact in the development of future therapies.
I’ve never met other black men or women with Parkinson’s in Montreal – and while I’m in contact with a few people online, I don’t know the details of their personal stories. It’s a sad reality that minorities face several challenges to get diagnosed correctly with Parkinson’s. That’s why three years ago I created a Facebook group called Everything about Parkinson’s Disease to connect with fellow patients, young or old – and of different races. It now has over 9,000 members worldwide. Running the group gives me a sense of purpose and I’m very happy to make a difference in people’s lives.
We need more awareness to break the myths and stereotypes around the condition. Parkinson’s doesn’t only affect old Caucasian men. It can impact anyone, regardless of age or ethnicity.
Need to know: Manon Day is 35 years old and lives in Montreal, Canada. She was diagnosed with Parkinson’s in 2011, age 27, and subsequently quit her studies in translation. She is now a Parkinson’s campaigner and runs a Facebook group called Everything about Parkinson’s Disease to raise awareness of the condition and how it can affect people of all backgrounds.
The facts: who does Parkinson’s affect?
Parkinson’s affects people of all racial and ethnic backgrounds and cultures
Around 10 million people across the globe live with the condition – and by 2040, it is estimated that there will be 13 million people with Parkinson’s
Our ‘In My Country’ series features interviewees from organisations around the world to spotlight the differing experiences of and attitudes towards people with Parkinson’s globally
Women and Parkinson’s: Our campaign
It is estimated that three million women worldwide are living with Parkinson’s – yet their specific needs and experiences are often ignored, leading to disparities in diagnosis, treatment and medication. Each week, we’ll be sharing the little-heard stories of women with the condition to find out how their lives are being affected by a shocking data gap when it comes to women and Parkinson’s. This is just the start.
We want to raise awareness of women’s experience of the condition within the medical profession, so that women’s symptoms are taken seriously.
We think more research is needed into the impact of Parkinson’s on women, so that they can benefit from tailored medication and treatment.
We want to explore ways to offer better support for those women managing the condition alongside caring responsibilities.
Join us – #WomenAndParkinsons.
For more information on women and Parkinson’s please visit the EPDA website.
If you have a story to tell about being a woman with Parkinson’s – or some information about the impact of the condition on women for us to share with the global Parkinson’s community – please get in touch.
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Scientists in China have developed a method to help improve stem cell research in mice models of Parkinson’s – which could potentially lead to promising new treatments. The researchers, based at the Chinese Academy of Sciences, identified two cell surface markers of dopamine neurons, which are reduced in Parkinson’s. They injected cells with these markers into the brains of the mice and found that this resulted in “higher therapeutic potency” for improving motor symptoms of the condition. As part of their research, the team also worked to control the variability of donor cells, to help improve therapeutic outcomes for Parkinson’s cell therapy. The researchers, whose study was published in ‘The Journal of Clinical Investigation’, described the findings as a “revolutionary step on the road towards more effective and safer stem cell therapies”.
Could frequent nightmares be an early sign of Parkinson’s disease?
A new study has suggested that experiencing recurrent nightmares and bad dreams could be an early symptom of Parkinson’s disease. Researchers from the University of Birmingham, UK, used data from an existing US study that followed 3818 men, aged 67 or older, over a period of 12 years. Participants who reported experiencing bad dreams at least once a week were followed up. During the follow up, 91 people were diagnosed with Parkinson’s. The results suggested that participants who had frequent bad dreams were twice as likely to develop the condition as those who did not. Commenting on the study, lead author Dr Abidemi Otaiku said: “While we need to carry out further research, identifying the significance of bad dreams and nightmares could indicate that individuals who experience changes to their dreams in older age – without any obvious trigger – should seek medical advice.”
More than £2m awarded to research on mitochondria and Parkinson’s disease
Researchers at UK biotech startup NRG Therapeutics are developing potential treatments that may help slow the progression of Parkinson’s by protecting the mitochondria – a part of every human cell that works to power chemical reactions. The company has now received a £2.68m award from government-backed agency Innovate UK to continue its research. Their research built upon previous findings that damage to mitochondria in the substantia nigra – an area of the brain associated with dopamine – may be linked to Parkinson’s. The scientists developed molecules that keep a ‘pore’ in the mitochondria closed, which stops calcium flowing into it, preventing a process that eventually ruptures the powerhouse of the cell and leads to its death. The new funding award follows previous investment from Parkinson’s UK and the Michael J Fox Foundation.