S01E07 “People don’t see them ill”: Stigma and invisibility of neurological disorders

03/25/19 • 39 min

1 in 3 people will at some point in their life suffer from a brain disorder, according to the Global Burden of Disease report and this number might be growing. Understanding these conditions has, therefore, become more important than ever.

Donna Walsh, a patient advocate, tells us about daily challenges of people suffering from brain diseases and neurological conditions, including productivity issues and mental illness stigma. She also discusses the broader socioeconomic implications, and the technologies that can help.

Donna Walsh is the executive director of EFNA (European Federation of Neurological Associations), an organization with a mission to improve the life quality for patients in Europe by influencing policy makers and the general public, and facilitating access to necessary healthcare.

What makes EFNA special is that they focus on what is common to various disorders, like multiple sclerosis, Parkinson’s disease, stroke, brain tumor, epilepsy, Alzheimer’s disease, etc. The approach is apparent in their campaigns on Twitter, Facebook and Instagram, like:
#UnderTheUmbrella
#BrainLifeGoals
#BrainMindPain

Kim Baden-Kristensen is the co-founder and CEO of Brain+, a digital therapeutics company that helps people with brain disorders and injuries to recover their fundamental cognitive brain functions and daily life capabilities by using an app-based cognitive rehabilitation platform, which is developed in close collaboration with patients, clinicians and researchers.https://www.linkedin.com/in/kbadenk/
Alessia Covello is a life science IT consultant working in the field of healthcare technology implementation, and advocating for better services for people with brain conditions and learning disabilities.https://www.linkedin.com/in/alessiacovello/

The talking points:

5:06 The concept of patient advocacy and EFNA’s mission

8:30 Overcoming the stigma of neurological disorders

11:32 How common are brain disorders, what is the burden on society, and how important is it that brain disorders are addressed on a large scale?

15:00 Chronic and fluctuating conditions - what makes neurological disorders different and what impact they have in patients’ professional lives?

20:14 Developing a community of patients and a common agenda

27:56 Patient advocate training and how it relates to treatment accessibility

31:50 The role of digital technology in treatment of neurological disorders

35:40 Take-home messages to policy makers, medical and clinical community, research community, the industry, and patients and their families
Disclaimer:

All references to products, companies, and organizations in this podcast and the article that accompanies it are included with the purpose to inform, rather than promote or advertise. The podcast authors do not receive financial compensation for any of these references.

The talking points:

5:06 The concept of patient advocacy and EFNA’s mission

8:30 Overcoming the stigma of neurological disorders

11:32 How common are brain disorders, what is the burden on society, and how important is it that brain disorders are addressed on a large scale?

15:00 Chronic and fluctuating conditions - what makes neurological disorders different and what impact they have in patients’ professional lives?

20:14 Developing a community of patients and a common agenda

27:56 Patient advocate training and how it relates to treatment accessibility

31:50 The role of digital technology in treatment of neurological disorders

35:40 Take-home messages to policy makers, medical and clinical community, research community, the industry, and patients and their families
Disclaimer:

Previous Episode

S01E06 Are you overworking your brain? Mental workload and mental fatigue

Is work in the world of digital technology really easier than hard manual work? Or is it just that we do not yet truly understand the nature and consequences of cognitive fatigue?

To answer these and many other questions concerning workers of the digital age, the BrainHealth Podcast team interviews Max L. Wilson, Assistant Professor at the School of Computer Science, Nottingham University. Wilson comes from the emerging field of human-computer interaction (HCI) and is especially interested in measuring brain activity of people using digital technology, and studying the long-term effects of such activity.

During the interview, Wilson sheds some light on the still unclear topic of mental workload, providing some productivity tips that help avoid mental fatigue and increase cognitive performance. He also discusses some currently available brain computer interfaces (e.g. Muse) and their potential in everyday life and healthcare.

Besides his academic research projects, some of which he describes in detail during the interview, Wilson is also involved in several technological projects which provide glimpses into the future of both work environments and how we take care of our brains. One, DigiTop, aims to “optimise productivity and communication between human workers and robots”. The project “Fitbit for the brain” aims to enable monitoring our mental well-being through insightful measures of mental workload and stress that goes with it. The last but not the least, Wilson is cooperating with the digital therapeutics company Brain+ on a project dealing with digital tools for early detection and prevention of Alzheimer’s disease.

Kim Baden-Kristensen is the co-founder and CEO of Brain+, a digital therapeutics company that helps people with brain disorders and injuries to recover their fundamental cognitive brain functions and daily life capabilities by using an app-based cognitive rehabilitation platform, which is developed in close collaboration with patients, clinicians and researchers.https://www.linkedin.com/in/kbadenk/ |
Alessia Covello is a life science IT consultant working in the field of healthcare technology implementation, and advocating for better services for people with brain conditions and learning disabilities.https://www.linkedin.com/in/alessiacovello/

05:07 - Human-computer interaction - HCI - and measuring brain-computer interaction

10:10 - Brain computer interface - uses in everyday life and healthcare (e.g. ADHD, Alzheimer )

19:17 - What is cognitive workload?

22:37 - Mental workload and stress

27:00 - App-based tracking of cognitive activity

30:20 - Wilson’s technological project - DigiTop

33:34 - PRODUCTIVITY HACKS: increasing mental work capacity and reducing cognitive fatigue

39:42 - TOOL-RELATED TIPS: What software and UI designs generate most mental fatigue?

47:58 - “Fitbit for the Brain" - finding a way to measure mental workload and stress

53:17 - Take-home messages - advice for everyday life and current research trends Disclaimer:

All references to products, companies, and organizations in this podcast and the article that accompanies it are included with the purpose to inform, rather than promote o

Next Episode

S01E08 “Use your brain”: On depression and neuroplasticity

What does depression do to our brain and can antidepressants help? This topic, abound with misconceptions and controversy, is becoming more relevant as depressive disorder climbs on the list of greatest health burdens.

To find out what current research is showing, Kim and Alessia talk to Eero Castren, a professor at the University of Helsinki and a principal investigator at the Neuroscience Center there. A trained medical doctor with a PhD in neuropharmacology, our guest has a remarkable resume as a researcher, including work with Bethesda National Institute of Mental Health, Columbia University, and Max Planck Institute.

His main area of expertise are neurotrophic factors - biomolecules that make neural connections possible. “Neurons,” Castren explains, “do not work alone, but as a network”, and neurotrophic factors allow establishment, maintenance, and, eventually, change of neural networks. These networks, in turn, represent all the things in our memory. Neurotrophic factors are, therefore, essential to the ability to learn and evolve - brain plasticity or neuroplasticity.

In this talk, Castren pays special attention to the effects of depression on neuroplasticity, especially on BDNF - a particularly important factor. He discusses findings on antidepressants and provides some advice on how to fight depression. Besides depression treatment, Castren also tackles new developments in treatment of Alzheimer’s and Parkinson’s disease, as well as stroke. Non-patients are not forgotten - our guest tells us about how to keep our brains plastic and make memory stronger.

4:57 - What are neurotrophic factors? How are they relevant for learning?
13:00 - Neuroplasticity and age
15:37 - TIPS: Can we influence the activity of neurotrophic factors and how?
19:38 - New treatments for Huntington’s disease, Alzheimer’s dementia, and Parkinson’s disease
23:34 - Causes of deficiency in neurotrophic factors - genetic and other
26:40 - Drugs that stimulate production of BDNF - study of antidepressants
36:08 - TIPS: How to make depression treatment truly effective? Advice on physical activity and other ways to deal with depression
41:45 - Brain plasticity and depression
43:50 - Other uses of antidepressants (e.g. stroke)
45:38 - Common misconceptions about antidepressants
48:30 - Take home messages

Disclaimer:
All references to products, companies, and organizations in this podcast and the article that accompanies it are included with the purpose to