Peggy’s positive attitude to Parkinson’s

FROM private planes to Parkinson’s Disease, Peggy Casey’s move from New York to South Galway has not been what the vibrant septuagenarian expected.
Dublin-born Peggy spent 25 years working in Manhattan before moving to Gort 12 years ago. Since then, cancer, shingles, knee surgery and now Parkinson’s Disease have colluded to destroy her retirement but the passionate gardener, talented artist and occasional lingerie designer remains defiant.
“I moved to Gort because when I decided to return to Ireland, I was looking for a house in my budget. It didn’t matter where it was and I had no connections to Gort but when I spotted a little cottage here, I bought it and it has turned out to be a very wise decision because of the great friends and neighbours I have made here,” she outlined.
Peggy moved in prestigious circles when she lived in Manhattan, though she is too modest to dwell on it. When she moved to South Galway, she envisaged regular trips back to her friends Stateside.
“I worked as a personal assistant to David Rockefeller’s wife, Peggy. I lived vicariously through the Rockefellers, I suppose but they were lovely people. Then I worked with a family called the Recanatis, who were wonderful and they would sometimes travel to Israel on a private plane and drop me off in Ireland on the way and collect me on the way back,” she recalled.
“When I came to Gort, I thought I would go back and forth visiting friends in New York all the time but then I got cancer,” Peggy explained.
Peggy was in her 60s when she moved back to Ireland and just six months into her new life, found that all was not going to be as she had planned.
“I was perfectly healthy or so I thought but within six months, I found a lump and I was diagnosed with breast cancer and had a mastectomy. It was very difficult but I made wonderful friends here. Up until then, I didn’t realise how much things had changed. I thought I would be going back to New York but this brought a halt to my gallop. I just didn’t realise how hard it would be,” Peggy revealed.
“Shortly after the cancer, I got shingles and that was another knock. Then I was having chemo and going to Dublin for radiation before having regular check-ups with the oncologist. One day he asked was I still falling in the garden and he sent me to the neurologist. I didn’t even remember telling him I had had a few falls in the garden but he sent me to have that checked out and the neurologist diagnosed Parkinson’s Disease. That was about June 2006,” she continued.
For Peggy, the news came as a shock, not least because she knew nothing of the illness.
“I didn’t know what Parkinson’s was. I hadn’t a clue. If I heard of it at any stage in my life or ever knew what it was, I had forgotten again. All I heard from the doctor on that day is that you don’t die of it,” she recalled.
The motor features that characterise Parkinson’s Disease are reasonably well known: the resting tremor that often begins in one limb but can spread as the disease progresses to all four; muscle rigidity; bradykinesia or slowness of movement, which can affect even automatic and unconscious movements such as eye blinking, swallowing, changing position and spontaneous emotional expression and postural instability, also known as gait disturbance.
“The first symptom, for me, was just the falling in the garden. Balance is a big part of Parkinson’s but when I was diagnosed, I devoured every book I could about Parkinson’s and read everything I could about it. I am a very practical and positive person so it was almost like this Parkinson’s thing unfolded gently. Then I started getting the jiggles, as I call them, where you shake and then I was put on medication as the disease really began to develop,” Peggy explained.
Non-motor symptoms of Parkinson’s Disease are those that are not related to difficulties with movement. Although Parkinson’s is defined as a movement disorder, it is also associated with a wide range of behavioural or neuropsychiatric and physical symptoms, which can severely impact quality of life. These can occur at any stage of the disease and include changes in the sense of smell, constipation, depression and rapid eye movement disorder. It is the tremors Peggy finds the most difficult of the symptoms.
“I think the tremors are the worst symptom but with the balance, I have to be careful, I have to really slow up. There is no question about it but slowing up is the biggest part of it. I love to garden and I garden during the summer and I try to be as active as I can but Parkinson’s certainly slows you up.  That is one of the main things I find,” she explained.
In the last two years, Peggy’s disease has progressed.
“When I was diagnosed, I thought ‘well I have it, I can’t send it back’, that was my attitude. That is not to say that I wasn’t upset, especially when the symptoms began to develop, but my attitude was what can you do?
“I get very scared inside. I don’t appear it but this is something that is curbing my mobility. I don’t feel I can go into Galway on my own, I would be too nervous. I got an awful fall last week and that has curbed it too. Parkinson’s Disease has diminished my mobility and I am very nervous,” she said candidly.
There are good days and bad days, according to Peggy, but her network of friends and family, along with Paddy Browne, Parkinson’s Disease nurse specialist and the monthly Parkinson’s Association of Ireland meetings in Galway have made the bad days a little easier.
“My brother lives in Kinvara and he has five children and they all come around and are wonderful and helpful. I try to be as independent as I can. I have home help and a neighbour who comes around but I try to stay very independent. I am very positive and I do the best I can, that is all I can do. Sometimes I try to be too happy,” she asserted.
Peggy loves to garden and also occasionally turns her hand to making bespoke lingerie. Since her move to Gort, Peggy has learned not to put too much stead in plans. That said, the future rolls out before her and it cannot be ignored.
“I worry quietly about the lessening mobility. I am surprised at myself because I am a positive person but this is very real. I don’t ever want to go into a home. It is depressing. These thoughts are depressing but I suppose that is only normal. Depression is part of Parkinson’s Disease. My whole lifestyle and thinking is governed by this now. I have had a wonderful life but it is hard to feel that is enough when you don’t have it today,” Peggy admitted.
“I think the main thing is to try to keep a positive attitude. I did have a bit of depression but we all have it and it is part of the disease too. Having a positive attitude is a big thing for me but all these things come up when you have Parkinson’s and it has certainly affected my life,” she added.
Peggy is one of 8,000 people nationally who suffer from Parkinson’s Disease. In November, celebrity chef Neven Maguire lent his distinguished nose to an educational campaign, which seeks to highlight the lesser known non-motor symptoms of Parkinson’s Disease. The Understanding Parkinson’s Disease – It Makes Sense campaign aims to raise awareness of the non-motor symptoms associated with the disease.
These non-motor or often invisible symptoms require long-term management in the community, usually with the assistance of a GP or nurse, and are known to impact on the quality of life for Parkinson’s patients.
Parkinson’s Disease is the second most common neurodegenerative disorder in the world, after Alzheimer’s Disease. The World Health Organisation (WHO) has estimated that by 2040 dying with Parkinson’s Disease will overtake cancer as the second most common cause of death.
Commenting on his involvement in the campaign, Neven said, “It is the small things that matter and I know I would find it not only frustrating but impossible to do my job if my sense of taste or smell began to deteriorate. The sensory experience with food – the colours, the tastes and smells combine to create enjoyment with food.”
Speaking at the launch of the campaign, Joe Lynch, CEO of the Parkinson’s Association of Ireland, said, “Parkinson’s Disease is well known for the symptom of the classic tremor but there are many other non-motor symptoms that take close management and have a huge impact on the quality of life for the Parkinson’s patient. Management of these symptoms is long term and happens in the community, which is why the Parkinson’s Association of Ireland (PAI) has branches throughout the country to provide support and resources for those with Parkinson’s Disease and their carers.”
For more information, visit www.parkinsons.ie.