Younger women and Parkinson’s: ‘I hid my diagnosis. There is a stigma around brain diseases’

Dietitian and former international hockey player Richelle Flanagan used to share the common misconception that Parkinson's disease is an "older man's illness", until she found out she had it when pregnant with her second child.

A curious observation while at work in her dietetic clinic in Dublin led to the first inkling that something was wrong. She was seeing a client who had been with her five years previously.

“I took out her record card and went to write on it and noticed that my handwriting was much smaller than five years prior. It was miniscule in comparison.”

Strangely, she couldn’t make it any larger.

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“I was willing myself to make it bigger and couldn’t. I thought there’s something not right about that.”

Consulting Dr Google, as you do, the symptom came back as “micrographia”, a common sign of Parkinson’s disease (PD). No matter how hard she searched to find it associated with something else, Parkinson’s kept coming back up.

Not long afterwards, she was on a skiing holiday, although her pregnancy meant she couldn’t ski herself. She recalls how she was having a hot chocolate one day as her husband came down to meet her off the slope “and my hand wouldn’t stop shaking. I remember saying to him, ‘as long as it is not Parkinson’s . . . ’ Then the penny dropped. I also had an aching shoulder that I was going to a physio for.”

She has since learnt that shoulder pain is common in people with PD.

Richelle asked her GP to refer her to a neurologist. An MRI showed no evidence of a brain tumour; a nerve test didn’t find any explanation for the painful rigidity in her right arm but a DaTscan, a test to help diagnose Parkinson’s, had to be delayed.

The disease stems from neurons being killed off in the area of the brain that controls movement, reducing the production of dopamine. A DaTscan uses radioactive dye that will highlight abnormalities in dopamine production, so Richelle couldn’t have that scan until after her baby was born, in October 2016, and then had finished breastfeeding. She waited until her daughter, Lexi, was seven months old, before undergoing that test.

We surmised that it was highly likely it was Parkinson's

In the meantime, she had been seen by an occupational therapist and it was evident she was struggling with some of her fine motor skills. “Between the two of us I think we surmised that it was highly likely it was Parkinson’s,” she says, although she had to wait until the official diagnosis came in 2017, at age 46, putting her in the “young onset” category.

To be told she had an incurable, neurodegenerative disorder so soon after giving birth to a much-wanted, long-awaited second child – their son was 10 years old at the time – made it a very “bitter-sweet” chapter of life. Although, “in the scheme of things, I was glad it wasn’t a brain tumour or MSA [multiple system atrophy],” she says, keen to put it in context.

“I remember we went on holiday shortly after the diagnosis and it just took the joy out of it. Lexi was only a baby.”

Young onset

A sister had died from breast cancer and her mother from a stroke, “so I had been through a lot of stuff”.

Richelle’s own illness was not news she wanted to share beyond her closest circle.

“I hid it for two years from friends and [extended] family. There is a stigma around brain diseases and I thought people would think less of me in terms of clients and colleagues.”

It was easy for her to hide because she doesn’t have a resting tremor, which is commonly associated with the condition. But her silence was weighing on her; she had always been very open about having coeliac disease and advocating for that community.

She did join the Parkinson's Association of Ireland, which has a young onset group. One member told her of a PD Warrior course at a medical exercise clinic, Personal Health, in Rathmines, which she started to attend. PD Warrior is an intensive, exercise-based programme designed to drive neuroplastic change to counter effects of the condition.

It was also through the young Parkinson's branch of the association that she got a grant to travel to the World Parkinson Congress in Kyoto, Japan in 2019.

“I was very fearful of going at first. This is what everybody who is diagnosed young has a fear of – the future, to see what is going to happen to you. But when I went, that kind of melted away. Even if people were ahead of you, they’re all living life to their full.

“Importantly, I met a lot of other young onset people from all around the world. It was a really transformative experience for me.”

On her return, she thought it was time to tell more people about her diagnosis but wondered how she would do it. Then, ironically, a colleague in her dietitian circle asked had anybody worked with a client with young onset PD and a number of others came back and said they only worked with such patients when they were in the middle to late stages.

Richelle knew she had to tell them it was essential for dietitians to get in early as “if there is any condition I have worked with that needs nutritional input, it is Parkinson’s. It has a really big impact. When I realised my friends were not really up to speed in the dietetic world, I thought this has got to change”.

That is when she disclosed her own diagnosis.

Better treatment

In the five years of knowingly living with PD, Richelle has become aware of how its stereotyping as a predominantly ageing male disease has coloured the way it is treated, researched and understood.

Search on the internet for "famous people with Parkinson's" and the roll call will almost certainly be headed by Muhammad Ali, Robin Williams, Alan Alda, George W Bush, Michael J Fox and, this side of the Atlantic, Bob Hoskins, Jeremy Paxman and Shay Healy. Take a closer look and you will find a few women, such as singer Linda Ronstadt and former US attorney general Janet Reno, among their ranks.

With so little heard about the female experience of Parkinson's, Richelle co-founded the international Women's Parkinson Project, along with two other women she kept in touch with after the Kyoto conference. It aims to highlight the need for better treatment and research for women with the disease.

Richelle noticed how her own symptoms got worse the week before her period, yet could find little research about the potential impact of female hormones. Within various support groups, she saw a similar theme coming up in women’s shared experiences around their hormones and symptoms, be it at the time of menstruation, perimenopause or menopause.

A founder member of the global alliance PD Avengers, Richelle used that platform to put out a survey for women with Parkinson’s, asking about hormones. Some 209 women responded, of whom about 147 were still menstruating and 84 per cent  of those said symptoms were worse the week before their period, while 49 per cent said they were worse the third week of their cycle.

What was “pretty astounding”, she reports, is that 90 per cent of the women said neurologists never asked them about their hormones, never spoke to them about HRT.

“You have got this whole body of women who are suffering and it is not being validated by the medics. It seems we have oestrogen receptors in our brains that affect our dopamine levels,” she continues, pointing out how many women report symptoms such as fatigue, irritability and brain fog in the days leading up to their period.

“I realise now that is quite a lot to do with a drop in dopamine. If you think of us with Parkinson’s, we have low dopamine to start with, then it drops even further.”

If this is recognised, medication doses could be tailored accordingly. Lack of dopamine can affect every muscle in the body, causing PD symptoms such as slowness of movement, impaired swallow and speech, constipation due to less bowel movement and reduced facial expression.

After diagnosis, Richelle was asking herself “what did I do wrong?”. But there is no known cause of the condition and her genetic testing showed no sign of mutations associated with the disease.

New findings

“One of the things I think could be potentially involved in my case is the coeliac disease because there is a huge link between the gut and the brain and there is research coming out around Parkinson’s and the brain and ‘leaky gut’ and inflammation.”

She follows with great interest any new findings to do with microbiome.

“There are things you can do to slow the progression – exercise, eating well and timing your medication. You need to avoid eating protein with your meds because protein competes for crossing over the blood-brain barrier with the dopamine. It’s amazing the amount of people who don’t know that.”

There is no way of telling how the disease will progress for each individual and she has held “fairly steady” so far.  Her main symptoms are slowness of movement on the right side, causing difficulties with writing and typing. Fatigue is also something that she needs to budget for now, not that resting comes naturally.

The night before we speak in her Terenure home, she was out playing veterans’ hockey. Family life is busy with a five-year-old and a teenager, not to mention an exuberant golden retriever. She is also clearly passionate about advocacy and research.

Empowering women is her priority and she collaborated with five others on a recently published paper on “the unmet needs of women living with Parkinson’s disease”. It concludes that there has been a lack of co-ordinated effort to provide practical guidance on the management of issues that impact the quality of life of women living with PD and to foster research in this area.

To advance customised management of the condition, Richelle is looking to digital technology. At the end of last year she and her team won the Swiss-based Day One health hackathon for an app to help women track their Parkinson’s symptoms in relation to their menstrual cycle and other aspects of daily life. She is setting up a company to produce the MyMovesMatter app as a self-management tool.

Through doing call backs for the Dublin branch of the Parkinson’s Association on nutritional issues, her eyes have been opened to how fellow PD patients are suffering. “I genuinely feel upset when I come off some of the calls because people are in such bad states due to the lack of access to the right advice and therapists. It’s shocking how bad it is.”

You have to do everything in the opposite big

As the shortage of neurologists and essential multi-disciplinary wraparound services in this country are not going to be solved  overnight, she believes people with PD have to take management of the disease into their own hands where they can. “Parkinson’s wants to make your world small – it wants to make your voice small, your walk small, your writing small, everything small. So you have to do everything in the opposite big.”

Read: Health system gaps must be filled to treat varying needs