Living with Parkinson’s

You sneaked in without asking and decided to stay. I was confused: why me?

This poem by Oulu-based Irja Lepola, 77, an amateur writer, describes her feelings about Parkinson’s disease. When Irja was visiting Oulu University Hospital in 2010, a neurologist who saw her walking in the corridor said that she had Parkinson’s disease.

“I was dragging my left leg. There were no other symptoms, but my mother and all her sisters had Parkinson’s. I remember the shaking.”

More detailed examinations were carried out at the neurology outpatient clinic. However, the symptoms were mild.

“Nevertheless, the diagnosis was a hard blow. It felt difficult and paralysing because I had always taken care of myself.”

Studying has always been part of Irja’s life. She has five degrees: a nurse, Master of Education, Doctor of Health Sciences, logotherapist and teacher of nursing. Running has also been an important part of her life. A progressive long-term illness did not seem to fit into the equation.

Parkinson’s symptoms slow you down, but support is always available

Irja has been on the same medication since the beginning. One of the medicines causes some side effects, so she is wondering whether it could be replaced.

“Sometimes I feel that I’m not good enough, that I’m frail and deteriorating. Fortunately, I sleep well, eight hours a night. It gives me a boost for the day.”

Irja admits that more than ten years of illness has left its mark. She has a stooping posture, and clumsiness and slowness interfere with life. When Irja and her husband are walking the dog, he walks ahead with the dog, and Irja follows them with her Nordic walking sticks.

She has written a poem about her condition: My body is failing and causing fears, as these may well be the final years. But I have nothing to fear, for I have inner beauty, and my grandchildren and their love are here.

“Even tableware may fall from my hands, which is why my meals are often served to the table. I have always received support and help when I have needed it. Fortunately, the neurologist at Oulu University Hospital thinks I’m cognitively bright.”

Irja says that over 12 years she has become quite an expert in her illness. However, she must have a check-up at the neurology outpatient clinic once a year.

Rhythmic exercise stimulates the brain

According to Irja, Parkinson’s disease is a family disease.

“I suffer from regression that can be difficult for others to understand, but I’m creative and spontaneous by nature. My youngest child said that my greatest strength is that I’m strong even in weakness. My husband calls me a delightful dame, and many people think I look younger than my age. You are responsible for your own life and what you make of it.”

Irja’s husband is used to her illness. They have been married for 54 years. Irja says they have created favourable conditions for a high quality of life.

“It’s just that sometimes the tools are lost.”

Irja may walk more slowly than before, but her pace remains vigorous. In rehabilitation courses, she is often one of the oldest participants, but also one of the fittest. She cycles, rows on the rowing machine and jumps on the trampoline. She is also thinking about buying a punching bag to be placed in the corner of the garage. Until then, however, she exercises by chopping wood.

Her exercise activities also include Finnish line dancing and Latin dances for seniors.

“Rhythmic exercise stimulates the brain, and Latin dances make it easier to move. I have also taken a course in ‘neuro Latin dances’, and I wish we could find an instructor for Oulu. In neuro Latin dances, the step sequences have been made suitable to those with neurological disorders.

Living in the here and now with no ifs or buts

Irja is a member of the Board of Directors of the Northern Finland Parkinson’s Association. She also serves as a club instructor and is a member of Parkinson’s Ladies – a small, intimate group for sharing experiences and supporting one another.

“Support is empowering among peers. To others living with Parkinson’s, I would say that together we’re strong. When I have given lectures, I have asked the audience to complete the phrase: Together we are more than...”

Lepola joined the Gubbe service for senior citizens in the spring of 2022. She volunteers as a friend for a blind 91-year-old man in a nursing home, among other people.

“I have been his eyes and company. I feel that my mission for the rest of my life is to find the uniqueness and dignity of those living in nursing homes.”

Parkinson’s disease has taken away Irja’s love of reading, but she is fascinated by writing. She is a member of three writing circles, and she has written down notes about her life. Perhaps one day they will be published for others to read.

In Irja’s own catechism, the fifth commandment reads as follows: Avoid the conditional tense. The present is the most important tense. Lepola tries to follow this commandment with all the resources she has, despite Parkinson’s and especially because of Parkinson’s.

Irja Lepola’s thoughts

• Over the years, I have become quite an expert in my illness.
• My greatest strength is that I’m strong even in weakness.
• You are responsible for your own life and what you make of it.
• Support among peers is empowering.
• The present is the most important tense.