“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.
Fergus Henderson: a Michelin star recipe for Parkinson’s
The Michelin star chef with Parkinson’s shares a festive three-course mea
18 hours ago
Regular exercise may slow progression of early Parkinson’s disease symptoms
A research team in Japan has suggested that around four hours of weekly moderate exercise is associated with a better clinical course of early-stage Parkinson’s. Their study, published in ‘Neurology’, drew on data from 237 people with the condition, whose symptoms were monitored over a period of up to six years. The research showed that people who were regularly active for at least one to two hours, one or two days a week, were better able to maintain daily activities than those who exercised less – and even experienced a “slower deterioration of processing speed”. The researchers highlighted that these benefits stemmed from maintaining regular exercise over time, rather than levels of activity at the onset of the condition. They added that their findings “suggest it may never be too late for someone with Parkinson’s to start an exercise programme”.
Could traumatic brain injury accelerate the onset of Parkinson’s disease?
Undergoing a traumatic brain injury (TBI) – a sudden injury that damages the brain – may be linked to Parkinson’s onset at an earlier age, new research suggests. The study, led by researchers in the US, examined data from the National Alzheimer’s Coordinating Centre (NACC) database and assessed whether TBI was associated with age of disease onset, survival and the degeneration of dopamine-producing nerve cells in the brain. They found that while there was no significant association with age of death or greater impact on dopamine-producing nerve cells, results showed that TBI was linked to a 4.9-year earlier age of Parkinson’s onset. Reflecting on the results, the researchers wrote that traumatic brain injury “appears to accelerate Parkinson’s onset without altering age of death”. However, the researchers also cautioned that “the nature of this relationship remains unclear”.
NASA astronaut who lived with Parkinson’s disease has died
“When I got diagnosed with Parkinson’s I thought it was over,” US astronaut Michael “Rich” Clifford once said, in a webcast conversation with Parkinson’s expert Dr Ray Dorsey. But when US space agency NASA offered him another opportunity to board a space shuttle, despite the onset of Parkinson’s symptoms, he didn’t hesitate. “And it was as easy as that.” Now, nearly 30 years since his final venture into space, Clifford has died due to complications from Parkinson’s disease. He leaves a legacy of three journeys into space, several awards for his services to the space programme – including the NASA Space Flight Medal – and a history of advocacy for people with Parkinson’s. In a 2013 conversation with the Michael J Fox Foundation, Clifford said: “Everyone with Parkinson’s handles it differently. Don’t let it get in the way of living. “Life is too good. Keep going. The sky’s the limit.” Image credit:…