Today I talk to Ciara O’Meara from Galway about what it’s like to live with MS in Ireland. She herself was diagnosed with multiple sclerosis in 2010. Ciara stresses the importance of keeping a positive attitude and standing up for yourself, especially because there are not enough specialists in the Irish healthcare system, so it can take quite a long time to get the (symptomatic) treatment you need.
Table of Contents
Introduction - Who is Ciara O'Meara?
Ciara O’Meara is a lecturer in general nursing at the University of Galway, Ireland. She lives in the west of Ireland and is a nurse by profession, but now works in academia and research. Ciara has been married for just over a year and has two dogs – Bosco and Fia.
Personal Experiences and Coping Strategies
Can you briefly share your personal journey with MS and how it has impacted your life?
I was diagnosed in 2010. Prior to that, I suffered from dizziness (vertigo) and right-sided pins and needles. My primary care physician (general practitioner or GP) referred me to the emergency room (accident and emergency (A&E) departments).
In your experience, what are some of the most effective coping strategies or self-care practices for managing the daily challenges of living with MS?
Bewegung und eine positive Lebenseinstellung sind sehr wichtig.
How important is mental health and emotional well-being for individuals with MS, and what support is available in this regard?
Mental health support is important throughout the course of MS, not just at the time of diagnosis.
Treatment and Care in Ireland
What types of MS treatments, therapies, or interventions are more commonly recommended or accessible in Ireland?
The aHSCT (autologous hematopoietic stem cell transplantation) is not offered in Ireland, but there are a number of other DMTs.
Are there any specific laws or regulations in Ireland that protect the rights and promote the well-being of individuals living with MS?
There are no laws or regulations that relate specifically to MS, but the MS cohort is covered by disability laws and regulations in Ireland.
Can you share any recent advancements or developments in MS treatment, care, or support in Ireland that you find particularly promising?
The Neuro Mapping Project is a great initiative where the Health Service Executive, the Neurological Alliance of Ireland and the Disability Federation of Ireland are working together to deliver neurorehabilitation services in Ireland.
Challenges and Support Systems in Ireland
Can you provide an overview of the healthcare system in Ireland and how it supports individuals living with MS?
I see a problem in the health care system in terms of access to MS nurses – there should be 14 in our catchment area, but there are only 4. Also, unfortunately, there are too few resources and too few staff.
What types of healthcare professionals are typically involved in the care and management of MS in Ireland, and what role do they play?
Unfortunately, there are no neuropsychologists. Physical therapy, occupational therapy and speech therapy are essential to the care and treatment of MS. However, waiting lists can be long and the appropriate specialists are not always easily accessible.
Are there any specific resources or support networks available for MS patients in Ireland, such as patient associations or community organizations?
Education, Awareness, and Advocacy
Which specific initiatives or programs exist in Ireland that focus on raising awareness about MS and educating the public about the condition?
We have the MS Readathon in November.
Summary from the Homepage of the MS Society Ireland: „It’s a simple but truly special event that helps children improve their literacy skills, develop a lasting love of reading, go on epic adventures and raise money to support people affected by MS in Ireland.“
How can individuals with MS in Ireland actively advocate for themselves and ensure they receive appropriate care, support, and accommodations?
It is very important that you advocate for yourself. Make decisions that best support you, in collaboration with the healthcare team.
What role do family members and caregivers play in supporting individuals with MS in Ireland, and what resources are available to support them?
The play an important role, but only minimal resources are available for them. I wrote my Masters Thesis on this area: „Parents experiences of a Multiple Sclerosis (MS) diagnosis in their young adult sons/daughters: An interpretive phenomenological study.“
What advice would you give to individuals with MS in Ireland who may be feeling overwhelmed or discouraged? How can they maintain a positive outlook?
Treatment for MS has evolved so much in the last 10 years that it is no longer a death sentence.
Quickfire Q&A Session
Complete the sentence: "For me, multiple sclerosis is...."
…an unwanted passenger in the car!
Which website can you recommend for people living with MS in Ireland?
What development would you like to see in the field of multiple sclerosis in the next 5 years?
More interdisciplinary collaboration that, for example, neurology and maternity units work together to support the sexual and reproductive health of women with MS.
Finally, what message of hope or encouragement would you like to share with individuals living with MS in Ireland?
There will be difficult days, but tomorrow is a new day and it will be brighter. You are a person first, MS comes second.
How and where can interested people find you online?
A big thank you goes out to Ciara O’Meara for providing these valuable insights and advice on how to best advocate for yourself and live a positive and enjoyable life despite MS.
Stay as healthy as possible, well informed and try to make the most of your life,
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