“It’s so important to be clear about how people can help you”
Women and Parkinson's
Author: Aileen ScoularPublished: 5 May 2022
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With a successful career in international development cooperation, communication is second nature for Germany-based Ingrid Roesner. When she was diagnosed with Parkinson’s eight years ago at the age of 57, she realised this skill would be “crucial” to help her live well with the condition
When I was diagnosed with Parkinson’s, it was a relief and a shock at the same time – a relief not to have a brain tumour or a stroke, but a shock to be told I had an ‘old person’s disease’.
Initially, medication allowed me to manage my condition well and I was able to continue working in international development. Ultimately, however, Parkinson’s and the pandemic had an impact on my career and I retired in 2021, two years earlier than planned.
Since my diagnosis, communication has become both a need and an opportunity, because Parkinson’s will accompany me for the rest of my life. Although I am grateful for the help received from my partner, my grown-up daughter, and from family and friends, I also needed to clearly communicate my feelings and experiences.
I have to be able to explain my symptoms to my neurologist, to help me get the most suitable treatment. I also need to be able to manage the feedback from within my own environment – from the people around me, and from the local community where I live, between Cologne and Bonn in Germany.
“Sometimes, people with Parkinson’s need to ask for help”
As my understanding of Parkinson’s has increased, I have realised the importance of writing down my experiences. I have also found it beneficial to use humorous drawings to cope with the situations in which I find myself.
Ingrid finds creating drawings helps her explain her condition to others.
I have used effective communication to solve potential problems. For example, when my neurologists recommended certain medication times in relation to meals, they didn’t consider how that would impact my daily schedule. So, I drew a picture of a clock with eating times marked on it. This surprised my doctors, but it was useful.
I have learned to be very clear about my symptoms when talking to my healthcare professionals, and I produce my own written follow-up reports. This helps me to clarify any changes or new problems, and what I need to talk to my neurologist about.
I have used drawings and graphs to help explain to my partner how my body condition changes throughout the day – I want to communicate when I am more likely to need assistance, which helps to avoid possible misunderstandings.
I have also used metaphors and drawings to explain to friends and colleagues why sticking to my medication time schedule is so important if I want to avoid periods of immobility. Sometimes, people with Parkinson’s need to ask for help from neighbours or strangers, and it’s so important to be clear about the situation and how people can help you.
The importance of speaking up
Good communication can help you get the best course of treatment. It allows you to learn from others and motivate each other, and it enables you to show your strength. Communication can help you to raise awareness and support ongoing research and development. It can allow you to be better prepared for the different phases of this condition.
For Ingrid, “communication is crucial”.
I don’t know what my future holds but for now, I will continue to enjoy life and try new things. I love cycling and sports and spending time with my grandchild, and I’ve also tried new activities like jewellery-making, painting and calligraphy.
My commitment to communication means I’m always happy to share my experiences with the wider Parkinson’s community. For me, communication is crucial.
Need to know
Ingrid Roesner is based in Germany, where she is now retired. During her career, she specialised in nutrition, followed by roles in municipal development and international development cooperation in Latin America and Africa where she organised international exchange events. She was diagnosed with Parkinson’s eight years ago, at the age of 57, and she recently underwent deep brain stimulation to help better manage her Parkinson’s symptoms.
Women and Parkinson’s: Our campaign
It is estimated that three million women worldwide are living with Parkinson’s – yet their specific needs and experiences are often ignored, leading to disparities in diagnosis, treatment and medication. Our campaign shares the little-heard stories of women with the condition to find out how their lives are being affected by a shocking data gap when it comes to women and Parkinson’s. This is just the start.
We want to raise awareness of women’s experience of the condition within the medical profession, so that women’s symptoms are taken seriously.
We think more research is needed into the impact of Parkinson’s on women, so that they can benefit from tailored medication and treatment.
We want to explore ways to offer better support for those women managing the condition alongside caring responsibilities.
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