Ulysses Neuro Podcast

Rare Disease Day is observed on the last day of February each year to raise the public's awareness of rare diseases. There are over 6,000 rare diseases worldwide, and approximately 4% of the global population is affected by a rare disorder. This implies that rare diseases are indeed individually rare, but collectively common. This month, we focus on the rare genetic disorder Prader-Willi Syndrome, which is caused by abnormalities on chromosome 15. Some of the core symptoms include an insatiable appetite, low muscle tone and behavioural and developmental problems. In this episode, we speak with Emma and Rory Tierney, whose son, Henry, has Prader-Willi Syndrome. They share their personal story as parents of a child living with a rare disease. In the second half of the podcast, we hear from Gary Brennan, the National Development Manager for Prader-Willi Syndrome Association Ireland (PWSAI), as he shares his knowledge on the supports available for those with Prader-Willi Syndrome and informs us of exciting research in the field.

December is a month that can be difficult for people with mental health issues and a history of trauma, and it is the most dangerous time of the year for drug- and alcohol-related accidents. In this episode of Ulysses Neuro Podcast we talk about addiciton and substance abuse, to help raise awareness on this disorder and reduce the stigma surrounding it: our guest Brendan, who has been battling addiction for 20 years, talks about his struggles and experiences with support structures. Addiction is a chronic brain disorder that manifests itself as a dependency on substances or behaviour. We discuss the complex nature of addiction, the overlap with mental health issues, the treatments available in Ireland and the stigma surrounding it.

In this episode of the Ulysses Neuroscience Podcast, we discuss the challenges and the joys found in life with Parkinson's Disease from a patient's perspective. We chat with Gary Boyle, who received a diagnosis of ‘Young Onset' Parkinson's Disease in 2009 at the age of 44. In the years that have passed since, Gary has become a champion for an ‘interdisciplinary' approach to dealing with Parkinson's, and all other neurological conditions. Having previously been a Board member of the Parkinson's Association of Ireland for two years, this year, Gary was elected as a Board member of the European Parkinson's Disease Association and has made it his mission to drive patient advocacy forward, so that in all medical consultations the patient is always placed first and is listened to in a way that fosters two-way conversation.

Each September, people from around the world raise awareness for dementia and the 21st is World Alzheimer's Day. Alzheimer's disease is the most common cause of dementia and accounts for 60-80-% of cases, but there are over 400 other different types of dementia. A few other causes are vascular dementia, Parkinson's disease, and dementia with Lewy bodies. In this episode of the Ulysses Neuroscience podcast, we discuss living with Lewy body dementia (LBD), as it is underdiagnosed and often misdiagnosed in Ireland. During this podcast, we hear from Kevin and Helena Quaid. Kevin is the vice-chairperson of Alzheimer Europe and was diagnosed with LBD in 2017. He was the first to write a book from the patient's perspective, titled, ‘Lewy Body Dementia Survival and Me,' and will soon be publishing his second book, ‘I AM KEVIN! not Lewy'. Helena Quaid is the chair of Dementia Carers Campaign Network and has taken on the role of carer since Kevin's diagnosis. In this episode we cover a wide variety of topics such as life with LBD both as a patient and carer, stigma surrounding it, supports available, the DaTscan and importance of early diagnosis, Robin's Wish documentary and Kevin's two books.

In this episode of the Ulysses Neuroscience podcast, we focus on the lives of Travellers in Ireland. Travellers are an indigenous minority who have been part of Irish society for centuries. In this episode we discuss the challenges and inequalities members of the Traveller community face in Ireland, including education, unemployment, overcrowding and healthcare. We chat to Bernard Joyce, who is the director of the Irish Traveller Movement (ITM) about his experiences as a Traveller in Ireland and the work he does with ITM. ITM is an organisation that represents the views of Travellers at a local, national and international level and works to promote change for Travellers with the aim to achieve equality in Irish society.

In this episode of the Ulysses Neuro Podcast, we celebrate Fragile X Awareness Day, which falls on the 22nd July in the US and other countries. We hear from Holly Roos, Community Services Director for the FRAXA Research Foundation, and her youngest child A. Holly is a mother of two children diagnosed with Fragile X Syndrome (FXS) and she shares her experience both as a mother and a carrier, discussing the challenges she has had to face from the very first day, sharing personal life stories and what kind of medical and educational support she had and how important it is to celebrate every single inchstone and milestone. A is 18 and lives in Illinois with Holly. A has just finished high school and is preparing to go to college soon. Holly and A share their experience of living with FXS, discussing the journey they have been on with Parker over the past two decades, and the challenges they have faced and overcome. FXS is a single gene disorder affecting 1 in 4,000 males and 1 in 8,000 females. It is the leading inherited cause of intellectual disability and it is caused by mutation of the FMR1 gene, which in turn reduces the production of the FMRP protein. FMRP is crucial for typical brain development as it controls expression of a number of other neurodevelopmental genes. Two main mutations have been identified: The full mutation giving rise to FXS, and a pre-mutation form in carriers whose children are of greater risk of having FXS. Carriers are also at risk themselves of a neurodegenerative disorder called Fragile X-associated Tremor/Ataxia Syndrome (FXTAS). Currently, despite the considerable progress in research in FXS, there is no cure or approved medication to treat the underlying causes of FXS and related conditions. This is in addition to the challenges faced by individuals with FXS and their families when it comes to diagnosis, support, and education.

In honour of Pride month, during this episode of the Ulysses Neuro podcast we discuss: LGBTQIA+ issues, access to services and mental health. Despite legislation to protect the community, there are still many existing inequalities faced by those of the LGBTQIA+ community such as unequal access to healthcare and work. In the workplace, there can be barriers and bullying due to surrounding stigma. This prejudice can result in poorer mental health, as those of the community are 1.5 times more likely to develop depression. We hear from Philippa Ryder and Gillian Fagan, who are two of the founders of Under The Rainbow, which is a social enterprise that advocates for diversity, inclusion and workplace wellbeing. Philippa shares her personal experience as a trans woman and the challenges faced when accessing healthcare in Ireland. Gillian is a pansexual, neurodiverse cis woman and shares her experiences and knowledge from her work as a psychotherapist. We discuss a wide variety of topics such as: research showing the overlap between neurodivergence and gender/sexual non-conforming, the power language holds in moulding the perception of being LGBTQIA+ and the promising future towards equal access and treatment for all people in Ireland, regardless of their identity.

This episode of the Ulysses Neuro podcast recognises May as Mental Health Awareness month. Mental illness encapsulates a broad range of conditions; the most prevalent being mood disorders such as depression and anxiety. Feelings of anxiety and sadness are human emotions that everyone experiences at different times in their life. However, when these feelings occur more frequently, without triggers and become consuming they may manifest as mood disorders. Mood disorders can affect any one irrespective of age, gender or background. The prevalence of mood disorders has increased dramatically during the COVID-19 pandemic as feelings of loneliness, anxiety, frustration are all amplified as we move from lockdown to lockdown. We discuss all of this and more with Stephen McBride, the Director of Services for Aware, an Irish organisation who provide a range of services including group meetings offering support and information, a telephone and email support service for both individual living with these feelings and their loved ones. Stephen outlines the necessary adaptations following increased demand for their services during the pandemic and how open conversation and education can stop the stigma associated with mental illness. Details of all of service provided can be found on Aware.ie.

In this episode of the Ulysses Neuroscience podcast, we address Autism Spectrum Disorder (ASD). Every year, April is Autism Awareness and Acceptance Month. Autism is a complex, invisible neurodevelopmental condition that affects the way a person communicates, interacts and understands other people and the world in a variety of ways: no two people on the spectrum are affected in exactly the same way. Self-advocacy is key to developing policies and research that focuses on the needs of individuals affected by a condition. The autistic community has been working relentlessly to ensure that autistic people enjoy equal access, rights, and opportunities. We chat with Ian Lynam, who is part of the autistic community and a representative of AsIAm, Ireland's National Autism Charity. We discuss what it's like to live with autism, the common misconceptions surrounding autism and therapies, and services available to autistic individuals, including charities such as AsIam.

In this episode of Ulysses Neuroscience podcast, we address acquired brain injury (ABI). This year, Brain Injury Awareness Day falls on the 16th March. Acquired brain injuries are injuries that happen during a person's lifetime and can change a patient and their family's lives suddenly and with no warning. Family members can sometimes be overlooked during the process of recovery, particularly in regard to mental health and where to access information and support networks as they adapt to life after a loved one suffers a brain injury and deal with feelings of anxiety, depression and isolation. We hear from Meadhbh, whose father suffered a brain bleed in 2019 leaving him with lasting physical disabilities and cognitive symptoms, meaning her family has taken up a full time care position within their home. We discuss the main types of brain injury, causes, prevention and what services are available for those affected in Ireland with the hope of raising awareness and moving towards improved services to offer the best rehabilitation outcomes for survivors of brain injury and support for their families.

The 28th of February marks Rare Disease Day and we pay homage to this day by chatting with Sarah Attridge who has CMT which is a sensory and motor neuropathy. CMT is a rare disease, often described as the most common disease you've never heard of. In this podcast, we explore CMT, giving an overview of the disease and the different subtypes. We hear directly from Sarah about the struggles and challenges she experiences on a daily basis, what supports she receives, how Covid-19 has impacted her therapy, and her hopes for CMT research in the future.

In our first podcast, we welcome Barry Murphy, communication officer from Bodywhys - The Eating Disorder Association of Ireland. We examine/define the various presentations of eating disorders and address the existing social stigmas and common misconceptions, while also advising on the various kind of services provided by Bodywhys and the Irish health services for patients and families affected by eating disorders. We also consider current research and how the Covid-19 pandemic has fuelled mental health issues particularly affecting people with a vulnerability towards developing eating disorders. We address all of this and more with the hope of raising awareness on disordered eating as an illness and help to better understand those affected by such disorders.