MS-Perspektive - The Multiple Sclerosis Podcast Nele Handwerker

Sleep disorders in multiple sclerosis can have a negative impact on many symptoms, which is why they should definitely be treated.
You can find the transcript of the interview on my blog: https://ms-perspektive.com/60-sleep-challenges


This episode is about sleep disorders caused by multiple sclerosis and how they can be treated. Almost three quarters of all people with MS suffer from sleep disorders, which reduce their quality of life to a greater or lesser extent.
Essentially, a sleep disorder means that your deep sleep phase is too short. This often worsens other MS symptoms, especially fatigue. Cognitive disorders and depressive moods also increase. All typical triggers for sleep disorders are quite treatable once they have been clearly diagnosed. You can even counteract minor sleep problems yourself by changing your behavior.





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How do sleep disorders manifest themselves?
What types of sleep disorders occur?
How are sleep disorders diagnosed?
Which behavioral adjustments help with sleep disorders?
What aids and medication are available for sleep disorders?
What can you do in acute phases?
And if sleep disorders occur permanently?
What is the best prevention against sleep disorders?
Food for thought
Question to you
What is the best prevention against sleep disorders?

Exercise in the fresh air. Good sleep hygiene. A healthy diet. Normal weight. Abstaining from nicotine. A stable psyche with the ability to deal with difficult situations. Loving people around you who make you happy. Little alcohol. A comfortable bed. And a functioning disease-modifying therapy for all symptoms triggered by MS, so that the disease comes to a standstill or is slowed down as much as possible.


Food for thought

For minor sleep problems – read a book in the evening or try progressive muscle relaxation according to Jacobsen.
For more serious sleep problems – talk to your neurologist about whether it would be useful to have an examination in a sleep laboratory. With the help of a detailed sleep analysis, you can get to the bottom of the cause and then treat it.


Question to you

Do you suffer from sleep disorders?


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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.

Blake Arnet talks about his motivation for the Dunk MS fundraiser event that takes place each spring in Los Angeles.
You can read the full interview on my blog: https://ms-perspektive.com/59-blake-arnet


Welcome to today’s episode where I talk with Blake Arnet, a former UCLA basketball player, about his fundraising event, Dunk MS. Blake’s mother was diagnosed with MS and passed away shortly after. He and his family initially participated in various fundraisers until Blake started the Dunk MS event a few years ago to make a larger contribution to research towards better treatment options and eventually a cure for MS.
In this interview, he talks about how his mother’s disease influenced his life choices and led him to use his athletic background for a cause that is close to his heart. The annual donations go to UCLA, which will be represented at the event by the renowned and award-winning MS researcher Prof. Dr. Rhonda Voskuhl, who is a big basketball fan herself.


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Introduction of Blake Arnet
Experiences as the Son of an MS Patient
Dunk MS - Fundraising Event for MS Research
Wishes and goals
Quickfire Q&A Session
Farewell



Introduction of Blake Arnet

I’ll give a quick highlight of myself. My name is Blake Arnett. I went to UCLA, I played basketball there. My mom was diagnosed with MS, when I was a junior in high school and unfortunately, she passed away only two years later due to MS complications. And so after that, obviously, you know, me and my family were pretty devastated. We went to walk MS and bike MS as a family. But I thought to myself, with my background in basketball, sports coaching and entrepreneurship, why don’t I create my own event from scratch and raise as much money as possible. I really had nothing to lose and so that’s where the idea of Dunk MS came to mind for me, in 2018 was our first event, and we raised $45,000 in my first year. So I knew I had something special here. And so ever, ever since then, and ever since my mom passed, um, finding a cure for MS and helping those affected by the disease, is my life mission. And I’m not going to stop until we find a cure and I’ll give more details as we get along here, but yeah.



Finally, what message of hope or encouragement would you like to share with individuals living with MS?

[00:19:44] Blake Bernet: I would say whatever you’re doing, at least for me, you inspire me and the people who have a chronic illness that it’s not their fault, right? You’re living every day with this disease. You’re doing the best you can. That is inspiring to me. I don’t know how… what I would do if I was in their shoes and so I feel privileged and blessed and honored to be, to have the things I have and the health that I have, I try not to take that for granted, because I’ve seen it firsthand, you know, go very wrong um. So, you all inspire me every day and a lot of others too, so just keep living, keep doing the best you can and we’re all thinking about you.


Farewell

How and where can interested people find you and your event online?

At dunkms.com. Everything is there, the event background, all our videos, information, tickets, if you want to just donate. We have a virtual sound auction, so anyone across the world can join and just simply buy a free virtual ticket for our event. And then you can also participate in our virtual sound auction, and we’ll ship anything directly to you. In 2024, the Dunk MS event is taking place Saturday, May 18th. And we’re doing it as a yearly event. You can find more information on all social media as well, LinkedIn, YouTube,

Choosing the right immunotherapy for each individual patient is a complex process. Prof. Ziemssen explains what needs to be considered.
You can read the full transcript of the interview here: https://ms-perspektive.com/58-immunotherapy


 
Today’s interview on immunotherapy for MS marks the start of the series on disease-modifying therapies. It is also episode 250 for the German podcast and I translated it into English. I have once again invited Prof. Dr. Tjalf Ziemssen, who is one of the most committed MS experts and, among other things, initiated the Multiple Sclerosis Management Master’s program in German and English, which I myself have been attending since August 2022. Thanks to this very well-founded study program, I have gained enough expertise to be able to pass on my knowledge of the therapies to you. 
Prof. Ziemssen answers important questions about the procedure, the selection and why it is so important to appreciate it when you see nothing in MS, when you manage to achieve disease remission. We also talk about why it is sometimes more important to move quickly into preventative therapy rather than focusing on rehabilitation and relapse treatment first. A brief detour leads to generics and biosimilars, which are increasingly playing a role in the drug landscape. We talk about how important it is to prevent MS activities as early as possible, what is involved in good monitoring and how patients are becoming more actively involved in all processes, as it is ultimately about our quality of life.



Table of Contents
Introduction – Who is Prof. Tjalf Ziemssen?
Basics and decision-making
Management of relapses
Generics and their influence on therapy
Monitoring and adjustment of therapy
Patient recommendations and quality of life
Farewell



Introduction – Who is Prof. Tjalf Ziemssen?

Dr. Tjalf Ziemssen is Professor of Clinical Neuroscience and Head of the MS Center Dresden at the University Hospital Carl Gustav Carus. He also initiated and directed the German and international Master’s Program for Multiple Sclerosis Management. He is a health visionary, digital health expert, pioneer of the digital twin and keynote speaker.




Where can people find you and your scientific work on the Internet?

The German video podcasts are on our YouTube page. Otherwise, our German podcasts take place on the first Tuesday of every month. And we hope to have you with us this year. We’re not as productive as you are, because I have to do other things from time to time.
Tjalf Ziemssen on PubMed
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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.

Depression can bring your everyday life to a complete standstill. Find out when you need help and what services are available.
You can read the full article on my blog: https://ms-perspektive.com/57-depression


Depression and mood disorders can bring your entire everyday life to a standstill. That’s why I’m dedicating this article to negative changes in the psyche. You will find out what triggers there are, when they occur, how they can manifest themselves, what support options are available and what you can do yourself. Every second person with MS experiences at least one depressive phase. It’s good if you know in advance what you can do in such a case. Because there are plenty of options. And depression is very treatable.





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When do mood disorders and depression occur?
How does depression manifest itself?
How can you measure depressive moods?
What triggers lead to depression?
What can you do yourself if you suffer from depressive mood disorders?
Where can you get help?
How can psychotherapy help you?
What medication is available to treat depression?
What is the best prevention against depression?
Food for thought
Question to you









Where can you get help?

Good first points of contact are your family doctor, your neurologist, your local MS patient organization and depression support associations.
On the website of Mental Health America you can do the worldwide recognized 10 question depression test. The New Zealand depression website also offers another test on anxiety disorders to find out what your problem is. These are just two examples. Feel free to use another local service to find out if you need help or if this is not/not yet the case. If in doubt, ask for help rather than putting off the problem for too long.
If the self-test confirms that you have depression, contact your neurologist, GP, psychiatrist or psychosomatic specialist as soon as possible.
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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. Giancarlo Comi presents the extensive work of the European Charcot Foundation to help improve the lives of people with MS worldwide.
You can find the complete transcript of the interview on my blog: https://ms-perspektive.com/56-prof-comi


 
This time I welcome Prof. Giancarlo Comi, President of the European Charcot Foundation (ECF), for an interview. We talk about the important role of the Foundation and how it has grown into an international, influential organization to improve the lives of people with MS in a variety of areas.
The Charcot Foundation chairs the English MS Master's program, which trains MS specialists on a part-time basis with over 100 international lecturers over 2 years.
The multi-stakeholder initiative is about coordinating different projects, pooling resources and avoiding redundancies. The Charcot Foundation also offers various further training opportunities, invites people to the annual meeting in Baveno on Lake Maggiore and is closely networked with the ECTRIMS organization and the local CTRIMS organizations around the world.
We talk about this and other exciting topics in the interview.



Table of Contents
Introduction – Who is Prof. Giancarlo Comi?
European Charcot Foundation
Charcot Multiple Sclerosis Master
Further activities of the European Charcot Foundation
Quickfire Q&A Session
Farewell



Introduction – Who is Prof. Giancarlo Comi?

I’m Professor Giancarlo Comi, means Professor of Neurology. I am at present Honorary Professor of the Vita Salute University, President of the European Charcot Foundation and Chairman of the Scientific Committee of Human Brains Prada Foundation. At the same time, I’m still having a clinical responsibility, I’m the director of the MS Center, in Milan, at Casa di Cura Igea. So this is the way I utilize my time.




Finally, what message of hope or encouragement would you like to share with the listeners?

It is a bit linked to what I said before. I think that one of the most important initiatives in multiple sclerosis, in the last 10 years, has been the promotion of the Progressive MS Alliance, jointly promoted by patients’ association with the involvement of many important academic centers. Because it is only if we join our efforts that we may be in a condition to succeed, in order to solve the problem of progressive MS treatment. So my message to people with MS is first, for those of you, who have received the diagnosis just now or very recently, be very confident with the possibility to live your entire life without major problems from the disease. Because when we are able to start our treatment very early, today we have so efficient disease-modifying treatment that it is not every way, not every time I have to say, but in the vast majority of cases, we are able to keep the control of the disease.
And the second message is for those who are forcibly already have the disease since some time. Again, here also for you, because of these new treatments, the expectations are extremely good to have a very good future. And for those, who unfortunately already have some level of disability, I also hear and see a lot of the important evolutions. Here, please don’t forget that the rehabilitation, not just only physical rehabilitation, but a very, let’s say, modern and complex rehabilitation, is of great importance to facilitate your life. So, don’t lose the opportunity to utilize such an approach. And also, I’m very convinced that in a very reasonable time, also for you, there will be some pharmacological support to try to block the evolutionary deficits.











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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.
 

For women with MS desiring motherhood, controlled MS and informed choices in pregnancy and lactation ensure a fulfilling journey, with modern therapies supporting both mother and child's health.
You can find the questions and asnwers to read on my blog: https://ms-perspektive.com/55-celia-oreja-guevara


Prof. Celia Oreja-Guevara advises women with multiple sclerosis and the desire to have children once a week at the University Hospital San Carlos in Madrid. It is best if the MS has been under control for two years. Then the chances of having a relaxed pregnancy are very good. 
As women with MS are on average somewhat older at birth, artificial insemination plays a role. The recommendation is to choose the slightly more expensive in-vitro option, as it has a higher chance of success and couples can save time and disappointment.
In general, it has been shown that motherhood hardly affects the long-term course of the disease and that nothing stands in the way of this important part of life’s happiness for many people. Modern, effective therapies control even highly active courses very well.
Those who wish to breastfeed can do so. Nevertheless, health should always come first and if it becomes difficult or very time-consuming, whether for therapeutic or other reasons, you can fall back on substitute milk without a guilty conscience. It is better to prevent relapses and possible long-term effects than to breastfeed at all costs. Dive deeper into the various topics around pregnancy, lactation and immunotherapy for women with MS.



Table of Contents
Introduction – Who is Prof. Celia Oreja-Guevara?
General information about the desire to have children with MS
Specific information on childbearing and pregnancy with MS
Breastfeeding with multiple sclerosis
Farewell



Introduction – Who is Prof. Celia Oreja-Guevara?​

I am Celia Oreja-Guevara, Vice Chair of Neurology and Head of Multiple Sclerosis Center at the University Hospital San Carlos, Madrid, in Spain.
I am Professor of Neurology at the University Complutense, Madrid.
After gaining my medical degree from the University of Madrid, I completed my PhD thesis in Neuroimmunology at the Max Planck Institute of Neurobiology in Munich, Germany.
I then completed a residency in the Department of Neurology at the University of Bochum, Germany, followed by a one-year fellowship in neuroimaging at the University Hospital San Raffaele in Milan, Italy. Since then, I have held several posts, including Senior Neurologist at the University of Dusseldorf, Germany, Head of Neurology at Hospital de Fuenlabrada, and Chair of the Multiple Sclerosis Center at University Hospital La Paz, both in Madrid, Spain. I am the Co-Chair of the Scientific Panel on Multiple Sclerosis for the European Academy of Neurology.
My main areas of research interest are clinical and neuroimaging correlations in MS, family planning, the use of optical coherence tomography in symptomatic therapy, neuromyelitis optica (NMO), and the evaluation of new drugs for the treatment of MS and NMO.
My hobbies are technology, buy gadgets, repair computer, visit technological exhibitions…
On the other hand, I like travel everywhere and to watch comedy and love films.




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

For patients with Multiple Sclerosis, becoming pregnant is absolutely possible with the right preparations. Therefore, engaging in thorough family planning is crucial to manage both the disease and the pregnancy effectively, safeguarding the health of both the mother and the baby.


How and where can interested people follow your research activities?

Twitter LinkedIn PubMed


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Many thanks for the positive insight views into the topic of pregnancy and lactation with MS.
See you soon and try to make the best out of your life,
Nele
For more information and positive thoughts, subscribe to my