Her ‘onwards and upwards’ attitude is certainly helping her to still live life to the full.
Pat Cullinan was diagnosed with Parkinson’s Disease and Lewy Body Dementia on the same day in 2023
Pat Cullinan’s ‘onwards and upwards’ attitude is certainly helping her to still live life to the full.
The Co Antrim woman, 65, was diagnosed with Parkinson’s Disease and Lewy Body Dementia on the same day in 2023.
This International Women’s Day, Pat, who hails from Ballymena, is committed to challenging the stigma that comes with a diagnosis. She is also keen to raise awareness and reassure others that many options and opportunities still exist for someone living with dementia.
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Pat’s father was also diagnosed with Parkinson’s Disease and Lewy Body Dementia, so she was aware of the warning signs when she began experiencing the symptoms herself.
She told Belfast Live: “My father had exactly the same diagnosis that I have now, so having helped to look after him for a good number of years as he declined, I kind of knew in my own heart that something was going on. After he passed away, it made me want to look after people.
“I went into care work with the elderly and dementia patients and discovered I had a real passion for it. My career highlight was getting a job as the manager of a sheltered housing association in Ballymena and lived on-site with 36 residents. But in 2015, the tremor in my right hand got so bad that I couldn’t work the mouse on the computer in my office or keep up with deadlines.
“I also had a problem with my balance, so I went to my GP, who was a very caring person, but I just found that he put it down to post-menopause, my age, stress, and all that comes with that. But I knew in my heart that something wasn’t right when you go from a person who organises everything around them to someone who can’t even tell the time properly.
“I was staring at a clock, and I didn’t know if it was upside down, so it seemed to be that my executive function, as they’re now calling it, was starting to decline badly.”
Pat as a child with her brother and father
Pat then had to retire on the grounds of ill health in 2015: “I kept going to my GP, and the answer was ‘there’s not necessarily something wrong with you, these things sometimes just happen’. I was going out of my mind, and my family didn’t know if I had a mental illness or what it was. It was an awful time, and in the end, after a lot of back and forth, I saw a movement disorder specialist who recognised my symptoms straight away. After the cognitive testing, she confirmed it — Parkinson’s disease with Lewy body dementia.
“I was nearly in tears when I went to see her because I was so desperate for an answer after years trying to get a diagnosis for my symptoms.. There was a powerful relief that I had a name for what was happening to me, and I wasn’t necessarily just stressed and going through all these things, thinking I was mentally ill; I had a name for all this.
“When I got back in the house, I thought, ‘What in the world will this entail now? What’s my future, what are the kids going to say, what am I going to do?”
She has since found a lifeline through the support of her peers after joining Dementia NI’s Empowerment Group in Ballymoney; she says this has been crucial to her continued health and positive outlook. Pat, who has four children and four grandchildren, remains active, with regular running, swimming, Pilates and movement classes.
For Pat, she says her saving grace has been the support she received from Dementia NI.
“I just thought, right, get your positive head on here, you can’t sit and waste away, because for me, the dementia side of things is far more distressing than the Parkinson’s. You can shake, rattle and roll and tumble over now and again, but when you feel you’re losing your intelligence, that’s quite a frightening thing when it’s told to you, but I’m doing amazing.”
Pat’s local Dementia NI Empowerment Group in Ballymoney is a small gathering of about eight members who come together and support each other on their journey with a dementia diagnosis.
Pat with two of her grandchildren
“I’ve never looked back, honestly, we’re a lovely wee bunch who are all in the same boat. We meet every fortnight and can talk openly in a safe space, share our feelings, have a giggle at ourselves and talk freely with no judgement. We also realise how much more there is that we can still do. It’s very important to be among people that you trust,” she said.
Pat has always been an active person and believes that keeping fit and healthy has slowed down the progression of her dementia and helped her maintain her positive outlook on life.
“I have always enjoyed exercising, doing yoga at home, dancing when nobody’s looking, walking, swimming, playing table tennis and jigsaws. I’ve also joined a Pilates class and a local community choir, too. It doesn’t matter what you do to keep your mind lifted; find a hobby that you can do that doesn’t stress you but you thoroughly enjoy.”
While not her personal journey, Pat says there are issues faced by women who may be misdiagnosed as having early menopause, as symptoms can be similar to early-onset dementia.
This International Women’s Day, Pat is encouraging women to be mindful of their health.
“I would like to quote Helen Keller, who said that the bend in the road is not the end of the road, unless you fail to make the turn! I know that there could come a time when I’m not just as capable as this, but for now I’m fighting back as much as I can,” she added.
To find out more about the work of Dementia NI and its network of Empowerment Groups, visit www.dementiani.org or call 028 96931555.
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