A dietician who was diagnosed with early onset Parkinson's Disease has launched a new app to help others manage their condition ahead of Parkinson's Awareness week.
53-year-old Richelle Flanagan is a dietician based in Dublin with 18 years of experience, and she is currently a committee member of the Dublin branch of the Parkinson’s Association of Ireland. Richelle's journey with Parkinson's began almost six years ago, when she was three months pregnant. She noticed her handwriting had suddenly become smaller.
Speaking to Dublin Live this week, Richelle explained: "It's coming up to six years now, I was basically three months pregnant I picked it up myself [the symptoms]. I was working in my dietetic clinic and a patient had come back to see me after five years of not seeing me, when I went to write in the record card I noticed my handwriting was much smaller than it had been five years previously and when I tried to make it bigger I couldn't.
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"So I thought 'okay that's a bit strange' and also I had been skiing with my family I was drinking a a cup of hot chocolate and my hand couldn't stop shaking, and the penny sort of dropped and I thought okay I need to go and ask my GP to refer me to a neurologist."
Richelle had to wait until her after her daughter was born and breastfed to get a scan to confirm her Parkinson's. She said: "We were shocked to get the diagnosis, I had to wait until my daughter was born and breastfed to get the confirmation. But I kind of knew in my heart of hearts from researching that it probably was Parkinson's.
"And I suppose with Parkinson’s disease generally speaking with the majority of people it can be a slow progressing condition, so it is something you can live with and I've been doing a lot of work as an advocate trying to raise awareness about the lack of services for people with Parkinson's and the lack of awareness around the fact that so many women have it and so many young people."
Richelle also noticed that there is a "stigma" associated with Parkinson's, and that the condition is most commonly associated with older individuals. She said: "In the research and training and in the news and media, it's portrayed as an older white male with a tremor, that's just what people have in their mind and unfortunately it's done us a lot of disservice in getting a diagnosis.
"It can be people here in Ireland who are juvenile that's under twenty, we have quite a number who are under forty, and then probably starting to get the numbers increasing in forty and fifty upwards.
"A lot of women kind of get dismissed in relation to a lot of the symptoms which are similar to the menopause, so they can be told it’s your hormones and be put on anti-depressants and various other things but unfortunately a subset of those people actually have Parkinson’s disease, it takes a while to get the diagnosis for certain."
Richelle is also calling for companies and workplaces to better support those who have gotten a diagnosis of Parkinson's Disease, so that they don't have to hide their condition. She said: "People who are diagnosed with early onset Parkinson’s lose up to twenty years of work life.
She said: "That could change if people are given access to the services to manage the symptoms better so they can stay in work longer, and in turn of reducing the stigma because there are a lot of people who are afraid to say they have it in case they get ousted out of their jobs, if the stigma is removed companies need to support people because it's a disability like any other disability."
Richelle is also launching a new app called My Moves Matter during World Parkinson's Month, which is a digital self-care companion for people with Parkinson's with specific focus initially on women. It aims to help women to remember to take their tablets, see patterns such as diet and exercise, track hormonal impact, gain knowledge, and more.
Richelle explained: "Basically from my own experience of noticing my Parkinson's symptoms got worse around my menstrual cycle’ so what happens is the week before your period your estrogen levels and hormones drop and with that your dopamine drops.
"That's the neurotransmitter that people with Parkinson's wouldn't have as much of, so for normal women who don't have Parkinson's you have PMS and feel groggy and brain fog, they're all to do with your estrogen levels dropping and dopamine dropping, but for those with Parkinson's they have a low base to start with so it goes further.
"So that's a big issue for a lot of women with Parkinson's around their hormones, so their fluctuation of perrimenopause may also affect their Parkinson's symptoms as well so that's something that is really debilitating for a lot of women who are younger with Parkinson's."
Richelle manages her Parkinson's by doing regular exercise like walking her dog, and she said that a person's diet is key. She said: "There's evidence beginning to show that the Mediterranean style diet A) helps prevent Parkinson's and B) might actually help to slow progression as well, so they are two important things for people to be aware of.
"Most people with Parkinson's have swallow issues, even myself I'm only going be 54 in May I have what they call mild dysphagia which is a mild swallow issue, because when you have a lack of dopamine it slows down all of your muscles moving. It's really dangerous you need to keep your swallow strong because the biggest killer of people with Parkinson's is getting aspirational pneumonia.
Richelle added: "So for me in terms of managing my day to day life for me the biggest symptom is micrographia my handwriting gets really small so I can't really write very well and then typing becomes a problem and managing fatigue, one of the biggest symptoms for people with Parkinson’s."
For more information on My Moves Matter visit www.mymovesmatter.com
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