That’s how Faye Boucher, a Quality and Access officer with the City of Wolverhampton Council’s Education Team, describes being diagnosed with Young Onset Parkinson’s Disease (YOPD).
Faye was 45 when she received a preliminary diagnosis of Parkinson’s, a year or so after developing symptoms, and is now sharing her story to raise awareness of the condition.
Formally diagnosed with YOPD last September, she said: “I thought Parkinson’s was a disease mostly reserved for the elderly – how wrong could I have been.”
Parkinson's is a condition in which parts of the brain become progressively damaged over many years. Symptoms vary but can include tremor, stiffness, slowness of movement, mild memory and thinking problems, sleep disorder, pain, anxiety and depression.
YOPD – referring to those diagnosed under the age of 50 – is thought to account for around 10% of all Parkinson’s cases, according to the charity Spotlight YOPD, suggesting around 14,500 people in the UK are living with the condition.
It says people with YOPD are diagnosed at a stage in their life where they have greater demands that those whose onset is later, as they are often in the middle of building a career, a family and financial security. They often experience different symptoms and disease progression and are more likely to have a genetic predisposition to the condition.
Faye said: “When I look back, I started to notice symptoms back in 2022. I already had arthritis in both knees so put the stiffness in my legs down to that.
“I became embarrassed by how what turned out to be YOPD was changing me; I stopped swinging my left arm when I walked, my steps became a slow shuffle, and I would avoid eating out as holding a fork was a challenge.
“I learnt to adapt – I would order sandwiches, put my weaker hand in my pocket, and reduced the time I left the house. But because I tried to hide away as much as I could, I lost confidence to go out alone.”
She spoke to a physiotherapist at work and her GP before being diagnosed with YOPD by a neurologist. She said: “Obviously I was upset, but the biggest feeling was relief, as I finally knew what was wrong. After years of suffering with health anxiety and worrying about the slightest thing, it’s surprising how you cope when your fears are confirmed.
“I took time off work and returned in November. My manager and work colleagues have been a great support and made coming back easy.
“People ask how I feel. Well, each day is different – some days the fatigue is awful and all I want to do is go back to bed, but who can do that with 2 children?! Other days, I feel great.
“You can live a fairly normal life with medication, and I have found that exercise helps so I go to the gym when I can.
“I have also found great support by reaching out to others in the same situation. I have become part of an online community and have met up with other local people with YOPD.”
Faye completed a sponsored walk in October, raising over £1,000 for the charity Cure Parkinson’s, which funds important research, and has also found valuable support from Parkinson’s UK, which provides a wealth of support and guidance for people with Parkinson’s and their families. She said: “I contacted them when I started my medication, and nothing was too much trouble.
“I hope to become more actively involved with Parkinson’s UK to help make a difference to the lives of people with Parkinson’s. I have been invited to sit on the Parkinson’s UK Mental Health Policy Steering Group and I am keen to set up a local support group for people of working age with Parkinson’s.”
Anyone who is interested in finding out more about the support group is invited to email faye.boucher@wolverhampton.gov.uk.
Faye is also keen to continue raising awareness of the condition ahead of World Parkinson’s Day, taking place on 11 April.
For more information and support about Parkinson’s and Young Onset Parkinson’s, please visit Parkinson's, Spotlight YOPD and Cure Parkinson's.
