IT was after she hit 40 that Carolyn Ibberson realised something was wrong.

“I was tired all the time - I’d suddenly feel exhausted, it took over me within minutes and I’d have to lie down - and I felt unbalanced, like I was on a boat. I had bowel and digestion problems and I often felt confused, in a bit of a fog. I put it down to turning 40 or thought maybe it was a virus,” says the mother-of-three, known as Caz, of Wyke. “I was a teaching assistant, running a breakfast and lunchtime club, I swam three times a week. I grew vegetables with my kids, we kept hens. I thought I was living the good life.”

A friend, who was a nurse, noticed Caz wasn’t walking properly and had low energy. “She said, ‘This isn’t like you - you’re normally whizzing around’. I got cramp in my left foot, like I was tapping it all the time. That’s when the tremors started.”

Caz had tests at Pinderfields Hospital. “I was filmed doing things like writing, drawing and walking across a room and a group of medical students picked up that I was showing signs of Parkinson’s Disease,” says Caz. “They noticed I didn’t swing my arm when walking, and my left leg didn’t move the same as my right leg.”

Despite having CT and MRI scans, Cat had no diagnosis. “I Googled the symptoms and Parkinson’s Disease came up. My husband and I watched videos of people with Parkinson’s and I just knew that’s what I had. But when I told the neurologist she said it couldn’t be that because I was too young.”

Finally, after having a DaTSCAN, which measures the level of dopamine receptor cells in the brain, Caz was told she had Parkinson’s Disease - at the age of 46.

Parkinson's Disease affects parts of the brain which become progressively damaged. The main symptoms are involuntary shaking, slow movement and stiff, inflexible muscles, and others include depression, insomnia and balance and memory problems.

“I had a nasty few years, pushed from pillar to post. When I was diagnosed I felt a mixture of shock, relief and anger,” says Caz.

Now 50, she struggles to do everyday tasks most people her age take for granted. She can no longer work and has moved into a bungalow. Having Parkinson’s has, she says, forced her to “start from scratch”.

“Sometimes my tremors are bad, other times I’m so stiff I can barely move. Getting out of bed takes 10 minutes. I struggle with daily tasks like washing and dressing, I can’t wear clothes with buttons because I can’t fasten them. I used to make healthy meals from scratch, now I buy pre-prepared or frozen veg," says Caz.

“I should be working, like other 50 year-olds, but I can’t hold down a job with such low energy levels.”

Caz has three children - Jonny, 31, Hanna, 29, and James, 24, and three grandchildren; Aimee, 12, Lily, seven, and two-year-old Teddy - but is unable to do the things she dreamed of doing as a relatively young grandmother.

“I should be able to look after my grandchildren, but I can’t babysit on my own. I’ve struggled to push prams and swings,” says Caz. “As my kids got older I looked forward to a time when my husband and I could go on holiday together, touring Europe in a camper van. Parkinson’s has changed everything. We sold our lovely family house and move into a bungalow because I don’t have the energy to clean and I fall up steps. That’s not something I expected at my age. I can’t even do the weekly shop on my own. I like to sew, but can't hand sew anymore. I use an adapted sewing machine.

“Parkinson’s has robbed me of 20 years. When you have Parkinson’s you have to plan for a new kind of life.”

Caz has also suffered alarming side effects from her medication, and been verbally abused in public. “Initially, within a month of taking my medication, I could walk again and felt great. Then I started to develop obsessive compulsive disorder, a side effect of the medication," she says. "When I worked in a school I did crafts with the children and after I was diagnosed I started making “Parky Purses” for Parkinson’s UK. I became obsessed with buying craft materials, I was spending far too much money, and I stayed up all night doing crafts. After about six months my husband, Steve, came home and found me in a state. He was brilliant and called my Parkinson’s nurse who took me off the medication.

“I take 15 tablets a day, every three hours. Some medication helps with some symptoms, but causes others. Medication that helps with the tremors causes pain and stiffness.”

Because Parkinson’s Disease is generally associated with old age, Caz has encountered hostility and ignorance. “When I was diagnosed it was a huge challenge to go out and get my confidence back,” she says. “I live in a small town, most people know I have Parkinson’s and make sure I feel comfortable when they see me. But in other places people stare open-mouthed and sometimes try to move away from me. Once I was sitting near a couple having lunch and the woman told her husband they had to move as she felt sick being near me. People shout nasty things, they assume I’ve got the shakes and have a drink problem or I’m on drugs.

"I get tutted at if I’m taking a while to pay in the supermarket, or get funny looks using a disabled parking space because I appear to be fine walking in - but it takes so much effort, by the time I come out I’m slow and shaky. People think I’m putting it on if I use a stick some times and not others.

“Sometimes I hide away if the tremors are bad, but if I can I get out and about to show that, yes, people my age get Parkinson’s too.”

Determined to raise awareness and help others with the condition, Caz is a busy volunteer, supporting Parkinson’s UK and as a health champion at her local GP surgery, Sunnybank Medical Centre in Wyke. She delivers a relaxation class and organises coffee mornings and a walking group, helping other patients enjoy a good quality of life.

For World Parkinson’s Day this month, Caz appeared in an online video of people from around the world talking about living with the condition. And in 2015 and 16 she appeared in Red Hot Sirens calendars, organised by staff at West Yorkshire Fire and Rescue Service. So far she and her family, friends and supporters have raised around £40,000 for the charity.

“When I was first diagnosed, Parkinson’s UK sent out a support worker who helped me through a difficult time,” says Caz. “Now I’m a volunteer with my local Parkinson’s nurse, offering peer support to other patients. It helps to know they’re not alone, and I find it rewarding. Sometimes I start my day with a false smile, but after helping others the smile on my face at the end of the day is real.

"My family and friends have been amazing. When I told them I had Parkinson’s I said: ‘Don’t feel sorry for me. Just help me raise awareness so I can help others who, like me, have it at a young age'.

"It’s a cruel disease, and a constant battle, but we're there for each other.”

* Visit or email Caz at

As a health champion, Caz helps to run weekly events at Sunnybank Medical Centre in Wyke: Walking group, meets Mondays at 9.30am; relaxation group, Mondays at 10.45am and coffee morning, Tuesdays from 10am-11.30am.