MS-Perspektive - The Multiple Sclerosis Podcast Nele Handwerker

Facts in a nutshell! The MS Brain Health Organization's report on a healthy brain explains why time is important in multiple sclerosis.
You can find the full text together with explaining graphics on my blog: https://ms-perspektive.com/38-time-matters-in-ms



Today I am providing a summary of the Brain Health Report – Time matters in multiple sclerosis, which was last updated in 2018. Even though some new findings have been added since then, such as the importance of EBV infection and new therapeutic options becoming available, the core messages remain. These include the importance of early treatment, leading a brain-healthy lifestyle, seeing an MS specialist and making decisions about the treatment of your condition together with your neurologist. Because only those who stand behind their decisions will stick to them in the long term. Also, the fact that cognitive impairment contributes significantly to a reduced quality of life and has a significant impact on whether a person with MS can continue to work full-time or at least with reduced hours. I have tried to summarize the most important key messages in easy-to-understand terms.








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Brain health. Time matters in multiple sclerosis
A look at brain health in MS shows that time plays a crucial role.
The neurological reserve must be preserved. It protects against progressive disability.
Three key recommendations for changes in treatment
Monitoring of clinical and subclinical indicators
Overview of the key recommendations
The aim of MS Brain Health. Time Matters








All graphics used are taken from the aforementioned presentation. You will also find all the references for the individual statements in the original file. I have omitted them here and left only the core statements. This has made the text easier to read 😉
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I have tried to make my contribution by reproducing and simplifying the key messages so that you can make better informed decisions and live with MS.
You can find out more about MS Brain Health at www.msbrainhealth.org.
See you soon and try to make the best out of your life,
Nele
For more information and positive thoughts, subscribe to my newsletter for free.
Click here for an overview of all podcast episodes published so far.

Unlocking the Nutritional Code for MS. Exploring the Nourand project with Dr. Mireia Sospedra. How, what and when to eat with multiple sclerosis.
You can find the written version of the interview on my blog: https://ms-perspektive.com/37-mireia-sospedra



This time Mireia Sospedra is my interview guest and we are talking about Nourand, an information plattform for multiple sclerosis patients who are looking for trustworthy information about a healthy diet. One of the things a person affected by MS can influence itself is food – what to eat and how to prepare it. And the more we are learning about the gut microbiome and central nervous system interaction, the more relevant it seems to take care of eating healthy. But what is healthy? What makes sense and which alleged facts have no scientific basis?



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Introduction – Who is Mireia Sospedra?
About Nourand and its Purpose
Exploring the Ten Main Points of Nourand
Questionnaires and Interactive Learning within Nourand
User Engagement and Future Plans for Nourand
Supporting the MS Community



Introduction – Who is Mireia Sospedra?

I was born and grew up in Barcelona, where I also studied Biology and pursued my PhD in autoimmune diseases.
After my PhD, I worked for two years as post-doctoral fellow in Paris, and afterwards, in 2001, I decided to further build my training in translational immunology in the United States. I moved to the National Institutes of Health (NIH), where I started working on multiple sclerosis. This disease has subsequently been the focus of my research until now. During my post-doc in the USA, I met my husband, who is German. We got married in 2004, in 2005 we returned to Europe, and in 2006 we got our son. Since we are back in Europe, we have lived and worked in Hamburg for 5 years and for the last 12 years in Zurich.
As you can imagine after listening to my trajectory, traveling and discovering new places is something I love, as well as cinema, which is another of my great passions.




What message would you like to share with people affected by multiple sclerosis who are interested in exploring the connection between nutrition and MS through Nourand?

Nourand can help people affected by MS to better understand their disease, how the digestive-, immune- and nervous systems work and interact, advantages and disadvantges of diets, foods and nutrients in a simple way and from the hand of experts in order to be able INCORPORATE nutrition into the management of their disease.



Finally, where can our audience find Nourand and begin their journey of discovery and empowerment in nutrition and MS?

You can find Nourand on our web page
www.Nourand.com
And also in LinkedIn, Instagram or Facebook under the name Nourand



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Many thanks to Mireia and everybody who helped to create the scientific facts for a healthy diet. I think it is always great to take an active part in influencing the long-term prognosis of the disease and use as many options as possible to do so.
See you soon and try to make the best out of your life,
Nele
For more information and positive thoughts, subscribe to my newsletter for free.
Click here for an overview of all podcast episodes published so far.

Dr. Lars Hvid explains the scope and projects of the Rehabilitation in MS (RIMS) network for best practice and research.
You can find all questions and soon the transcript of the episode on the blog: https://ms-perspektive.com/36-lars-hvid



Today I talk to Dr. Lars Hvid from Aarhus University in Denmark about his role as Communications Officer for RIMS – the Rehabilitation in Multiple Sclerosis Network. It was originally focused on Europe to share best practice and research findings on the symptomatic treatment of MS. However, it is increasingly becoming an international network as the need for rehabilitation is universal. After a general overview, we will go into more specific details, such as the different stakeholders (SIGs) and how collaboration takes place and how patients can benefit from the research results.



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Introduction – Who is Dr. Lars Hvid?
About RIMS (Rehabilitation in Multiple Sclerosis)
Special Interest groups (SIGs) under RIMS
Sharing the data obtained
Quickfire Q&A Session
Farewell
Introduction – Who is Dr. Lars Hvid?

Dr. Lars Hvid: I’m an Associate Professor at Aarhus University in Denmark, working in the exercise biology department. I work together with Professor Urlik Dalgas if people know his name. We mostly work on Exercise and MS at Aarhus University. In addition to that, I’m also a senior researcher at the Danish MS Rehabilitation Hospitals. So these are two hospitals we have in Denmark where you can be referred to as an MS patient and go and receive multidisciplinary rehabilitation, depending on whatever goals and aims you have. So that’s where I work now. My background is I’m an exercise physiologist. So I started working a lot with some of the exercise studies, started working in aging research, and then in 2017, I moved into MS research. That’s the only thing I work on these days, that is MS.




How and where can interested people follow your research activities?

Dr. Lars Hvid: Yeah, well, of course, we have the RIMS web page called EURIMS, eurims.org. That’s one place you can see some of the information. We also have a Twitter or X account, X or Twitter account, where you can follow the RIMS organization. We try to post a lot of information about the meetings, the SIG meetings, the webinars, and whatever we are doing. We have a LinkedIn profile as well. The information on LinkedIn and X are overlapping. Some of them are the same, but these are the platforms that we try to communicate on. So you can easily follow us there.
I also have a LinkedIn profile and an X profile if you want to follow what I’m doing specifically, but for the RIMS, you can go to the webpage there‘s a link in the top left corner where you can click on the Twitter or X or the LinkedIn logo.
RIMS Website: https://www.eurims.org/ Twitter / X: https://twitter.com/eurims LinkedIn: https://www.linkedin.com/company/rehabilitation-in-multiple-sclerosis/ LinkedIn Profile of Dr. Lars Hvid: https://www.linkedin.com/in/lars-hvid-13a264105/ Twitter / X profile of Dr. Lars Hvid: https://twitter.com/hvidlars?lang=de


Is there anything else you would like to share with the listeners?

Dr. Lars Hvid: No, but I think a podcast like this is quite important because you target the audience that is the key audience, which are the patients, of course. But of course, it could also be researchers and practitioners, who do all they can to help to try to do research or practical stuff that are of benefit to MS patients. I think the dialogue between researchers, practitioners, and patients is the key to advancing even more in the comin

Indu Khurana uses her expertise as coach and psychotherapist to help people with multiple sclerosis facing their battles with the disease.
You can find all questions and answers on my blog where is lots of other great content as well: https://ms-perspektive.com/35-indu-khurana



Today I’m talking to Indu Khurana who received her MS diagnosis in 2017, approximately 25-years after her first symptoms. With her experience of up to 30 years as a psychotherapist and coach she tries to help people with multiple sclerosis to get through their battles with the disease. So that they get a better understanding of themselves – their mind and body and how the interact – and become more resilient.



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Indu Khurana's Background and Approach
Empowerment and Transformation
Holistic Well-being and Resilience
Creating a Fulfilling and Successful Life Journey
Supporting Clients on Their Journey
Quickfire Q&A Session
Farewell



Indu Khurana's Background and Approach

Could you please introduce yourself and share a bit about your journey and background in supporting individuals with MS?

Hi I am Indu. I have been a Coach and Psychotherapist for around 25-30 years, but I only started to focus on helping people with MS in the last year.
Partly this was because I needed to go through my own journey with MS, and partly because I started my business full time only since September 2022 and felt strong enough to support others facing the battles, I had faced myself in previous years.
I was diagnosed with MS in 2017 but I think my first symptom was probably on my 31st birthday – 25 years before the diagnosis. Over those 25 years I researched a lot and tried to address the symptoms that didn’t have a diagnosis (or at least one that made sense) in natural and alternative ways – so I learnt a lot about myself, my body, our bodies and how everything interacts.




Finally, what message of hope or encouragement would you like to share with individuals living with MS who might be listening to our podcast?

Keep monitoring your hope levels. If you find your hope drifting or declining, reach out for help.
And
Keep listening to your body.



How and where can interested people find you online?

You can find me on indukhurana.com
Thank you for giving me this opportunity to share my thoughts here today.



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Thanks a lot to Indu Khurana for sharing her tips, expertise and support in how to find individual ways through all the hurdles that come when receiving a diagnosis like multiple sclerosis. It is a lifelong journey and therefore it is very important to have stable mental health or try to get to that stage.
See you soon and try to make the best out of your life,
Nele
For more information and positive thoughts, subscribe to my newsletter for free.
Click here for an overview of all podcast episodes published so far.

Patient Engagement Consultant Trishna Bharadia talks about how people with MS can adivcate for themselves or for a wider community.
You can find an overview of the questions I asked Trishna on my blog: https://ms-perspektive.com/34-trishna-bharadia



Today I am speaking with Trishna Bharadia, who is a very active patient engagement consultant and works with a variety of companies and patient organizations to ensure that all patients with multiple sclerosis are included in the planning and implementation of campaigns, services and dialogue with various stakeholders. She shares her knowledge, some representative examples of well implemented patient focus and tips on how to become active yourself and where to get the right training.



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Introduction – Who is Trishna Bharadia?
Question to Trishna Bharadia
List of the mentioned websites in regards to patient engagement
How and where can interested people find you online?



Introduction – Who is Trishna Bharadia?

Trishna Bharadia is a Multi-award-winning Patient Engagement Consultant, a Health Advocate, Speaker, a Writer and a Content Creator and lives in Maidenhead in the United Kingdom.




List of the mentioned websites in regards to patient engagement

Trishna Bharadia mentions some platforms where you can learn how to become a patient advocate yourself, as well as some very good patient-centered initiatives. You can find them all here:
EURORDIS Open Academy https://openacademy.eurordis.org/ EFNA Online Advocacy Courses https://www.efna.net/elearning/ Health Union https://health-union.com/ EUPATI https://eupati.eu/ MS in the 21st Century https://msinthe21stcentury.com/en/ Roche Mechanics of MS analogy https://www.ieepo.com/content/dam/websites/ieepo/2022/resources/learn-library/2022-ieepo-materials/Patient%20booklet_MS%20progression%20analogy%20toolkit.pdf Novartis More to uS campaign https://www.outsourcing-pharma.com/Article/2020/10/15/Novartis-shines-spotlight-on-patients-living-with-MS Merck Patient Group Forum Event https://deep-dive.pharmaphorum.com/magazine/patient-engagement/true-pharma-patient-co-creation-merck-ms/


How and where can interested people find you online?

Instagram www.instagram.com/trishnabharadia Twitter www.twitter.com/trishnabharadia 
Facebook www.facebook.com/trishnabharadia2015
YouTube www.youtube.com/trishnabharadia
LinkedIn www.linkedin.com/in/trishnabharadia/ ---
Many thanks to Trishna Bharadia for the very informative interview and for showing us that it is worthwhile working for yourself, but also for a larger group of patients. I wish Trishna continued energy and of course all the best for her own journey with MS. It’s really great what she has already achieved and how she is contributing to a more inclusive society.
See you soon and try to make the best out of your life,
Nele
For more information and positive thoughts, subscribe to my newsletter for free.
Click here for an overview of all podcast episodes published so far.

Prof. Patrick Küry talks about treating neurodegeneration in Multiple Sclerosis by modulating HERV-W and binding to its envelope protein.
You can read the questions and short answers on my blog: https://ms-perspektive.com/33-patrick_kuery



This time I talk to Prof. Dr. Patrick Küry about whether we can treat neurodegeneration in multiple sclerosis by modulating HERV-W? 
Multiple sclerosis is driven by two disease-causing aspects – acute inflammatory activity, which is now well treatable, and neurodegeneration, which continues to pose major challenges to researchers and physicians. Finding ways to effectively treat neurodegeneration could finally help people in the progressive course, whether PPMS or SPMS. And since neurodegeneration presumably starts in the prodromal phase, i.e., with the onset of pathogenic processes, all MS patients would benefit. But what is HERV-W and how can it be influenced to prevent neurodegeneration? That’s what I talk about in an interview with Prof. Küry.



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Introduction – Who is Prof. Dr. Patrick Küry?
Neurodegeneration in multiple sclerosis
Role of HERV-W in multiple sclerosis
Future outlook to stop neurodegeneration in MS
Farewell



Introduction – Who is Prof. Dr. Patrick Küry?

Molecular and cellular biologist, Swiss origin, PhD in Switzerland, postdoctoral education in UK on developmental neurobiology, moved to Düsseldorf, Germany for cellular studies on regeneration of the nervous system.
Prof. for Neuroregeneration in Düsseldorf, working in a clinical environment, connecting basic science with clinical applications, research team consisting of basic scientists and medical scientists.
Trained as biologist, I love zoology, being in the field, in the nature, in the desert…

Photo: Dr. Rok Humar
How and where can interested people follow your research activities?

Email: kuery@hhu.de Website: https://www.uniklinik-duesseldorf.de/patienten-besucher/klinikeninstitutezentren/klinik-fuer-neurologie/forschung/neuroregeneration-kuery PubMed X (twitter): @HERV&Brain https://geneuro.com


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I find this research on HERV-W extremely exciting, especially since it seems so far that there are no or few side effects to be expected. And I would be so very happy if there are finally first breakthroughs in the treatment of neurodegeneration and thus the progressive processes of MS. So that people with PPMS and SPMS have more than symptomatic therapy options available. I am interested in your opinion on this. Feel free to contact me and let me know if you would like me to shed more light on the subject.
See you soon and try to make the best out of your life,
Nele
For more information and positive thoughts, subscribe to my newsletter for free.
Click here for an overview of all podcast episodes published so far.