Listening in: A frank exchange between a Parkinson’s patient and a neuroscientist
The Women’s Brain Project is keen to engage with patients and learn as much as possible about their first-hand experience of a disease. We believe this is important to avoid living in a bubble of experts.
For that reason, our Chief Scientific Officer Maria Teresa Ferretti was happy to accept the invitation of the PD Avengers, an advocacy group of people living with Parkinson’s disease, to discuss sex differences and gender specific needs in women living with neurodegenerative diseases.
The conversation with Richelle Flanagan, a member of PD Avengers and committee member of the Dublin Branch of Parkinson’s Association Ireland, ranged over diagnosis, treatment, the approach of the medical profession and the influence of hormones on women’s symptoms.
Richelle first noticed symptoms when she was pregnant with her daughter. “In my practice as a dietician in my private clinic, I became aware that my handwriting had got very small and I couldn’t make it any bigger.”
Puzzled by this strange phenomenon, she went to a neurologist but he thought she was too young to have Parkinson’s. She had to wait until her baby was born and she’d finished breastfeeding to have a DaT scan. “And unfortunately, that showed that I did have young onset Parkinson’s disease, which affects up to 20 per cent of people with Parkinson’s.”
Richelle went on to become a Parkinson’s advocate after attending the World Parkinson’s Congress. In the course of her journey with the disease, she has become extremely well informed and has observed differences in how women with the disease are dealt with. She’s also carried out her own research, which we are delighted to share here.
The survey, which gathered the views of more than 200 women living with Parkinson’s, confirmed the fact that symptoms (both motor and not-motor) fluctuate during the menstrual cycle (in young women that’s one week every month of worse symptoms) and change with menopause.
This phenomenon is known in the scientific literature. But surprisingly, among the patients surveyed, it was apparent that neurologists had no interest in broaching this topic. More than 80% of respondents said their doctors never asked about their hormonal status, never adjusted treatment to menses, never mentioned any effect of menopause and never discussed hormonal replacement therapy if they were already perimenopausal.
In response, Maria Teresa commented: “These results need to be confirmed in a larger study, but indicate an urgent need to raise awareness in the medical community about female-specific issues, and encourage evidence-based adjustment to patient management plans to accommodate women’s needs.”
The majority of PD patients – some 60 per cent – are men. In Alzheimer’s, women are more likely to have the disease with a breakdown of 65 to 35 per cent. While this difference in numbers is interesting in itself, the WBP concerns itself with broader questions that can actually make an impact on the lives of the patients.
Maria Teresa gave a recap of these questions in the webinar: “Let’s take a man with Alzheimer’s or Parkinson’s and a woman with the disease. Do they have the same disease? Do they present with the same symptoms? Do they progress the same way? Do they respond similarly to the same drug? Do they have different secondary adverse effects to drugs? Do they have different risk factors?”
By actually looking into the data, WBP scientists realised that there are a lot of differences.
Richelle has seen this for herself. “So we know with women with Parkinson’s that they get diagnosed later than men do. And one of the reasons is that women’s symptoms tend to be more on the anxiety and depression side while men’s symptoms tend to be on the motor side. As a result, women are often dismissed and told, it’s all in your head, it’s a bit of anxiety or a touch of the menopause. So they don’t get the intervention they need.”
Having more sex-based research should help all patients at all stages of a disease. Maria Teresa is a big fan of biomarkers, “a biological molecule found in blood, other body fluids or tissues, that is a sign of a normal or abnormal process, or of a condition or disease”.
“In general in neurology, the diagnosis is still mostly clinical,” she explained. “So you have neurologists who are trying to figure out based on your symptoms what’s going on in your brain. This requires a lot of experience but it is a trial-and-error process. To know if it is Parkinson’s or Alzheimer’s we need to have some biomarkers that tell you about the pathology in the brain. We are starting to have some biomarkers like those but we should do much more.”
Because of the issues that many women experience in their interactions with the medical profession – the response that it’s all in their head or they should relax – biomarkers have the potential to bring more objectivity to the complaints of women. “Women should definitely be taken more seriously when they go to their doctors. This is something I strongly believe,” Maria Teresa said.
At the end of this fruitful discussion, Maria Teresa said it was time to reconsider a lot of things in neurology and neuroscience, including sex and gender differences.
“My vision, my dream, would be a new taxonomy of brain disorders where clinical symptoms are just one part of your diagnosis. We need to take a step back and look at the brain with completely new eyes and look at biomarkers and the specific characteristics of patients.”
A follow up webinar was hosted by Cure Parkinson featuring Dr MariaTeresa Ferretti, Richelle Flanagan, Professor Elena Moro, Louise Ebenezer, Dr Cathy Molohan and Dr Annelien Oosterbaan. Click here.