In this first episodes I want to provide you an overview what you can expect from the podcast and corresponding blog articles.
Why am I doing it? What type of episodes will be published and how often. And how is the style of the provided information.
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Table of Content
Introduction
Welcome to MS-Perspektive, the multiple sclerosis podcast. My name is Nele Handwerker and I am the host of this podcast. Today I start with Episode 0, where I introduce myself and the podcast, so you know what to expect in the future.
Why am I doing the podcast?
I am starting this English podcast because I want to share my perspective on living with multiple sclerosis. There has been a German version since March 2020 with the same concept which will keep coexisting. Due to the German Original the logo and name MS-Perspektive is spelled with a „k“. The podcast is meant to give hope that living with multiple sclerosis today can be very beautiful. I want to present facts from research and science in an understandable form for non-medical people, so that patients can deal with their disease in a well-informed way. Of course, relatives of MS patients are also welcome to tune in to learn more about the disease or people who are simply interested in what MS is. But basically, I am doing the podcast for you, to make the time after diagnosis easier for you and to guide you on your way to accept the disease and to live with it in the best possible way.
Who am I?
I am Nele Handwerker and I received the diagnosis of multiple sclerosis in the summer of 2004. A year earlier I had already been diagnosed with clinically isolated syndrome, or CIS for short, after an inflammation of the optic nerve. At that time, I had just completed my undergraduate studies and was at first completely shocked and predicted a dark future for me. In the meantime, 19 years have passed, I have no permanent limitations so far, I am a mom of a little daughter, have started my own business, study Multiple Sclerosis Management (M.Sc.) part-time and have been writing children’s books on the side for a few years. In that time, I have seen some changes in the approach of neurologists to the disease. That’s because as more and newer evidence comes in, treatment recommendations are constantly being adjusted. And this will continue in the future.
I have had very good experiences with my baseline therapy, which completely saved me from new lesions from 2010 to 2017, as proven by MRI scans. Then I did not take any disease-modifying therapy for 1.5 years due to pregnancy and breastfeeding my daughter. Unfortunately, this brought a mild episode with sensory loss and new lesions on MRI. Since I have been back on my preventive therapy, there have been no further relapses or lesions on the MRI. These positive experiences match the common recommendation of neurologists to take counteractive measures with a disease-modifying treatment (DMT), as soon as possible, especially in the relapsing course of MS. Many studies have shown that an effective DMT is the best approach for keeping MS patients healthy for a long time.
What is my background?
Coming from a family with many medical professionals, I have a positive attitude towards neurologists and radiologists in principle, because I know that they want to help me and that is why they have chosen this often very stressful and not very family-friendly profession. At the same time, I am a strong advocate of well-informed patients who can ask specific questions and make decisions together with their doctor about therapy – the so called shared-decision making.
My undergraduate degree was in business and has no overlap with multiple sclerosis. However, following graduation, I worked for a large medical device company that manufactures computed tomography scanners and nuclear medicine scanners for molecular imaging. Afterwards, I have been working for a specialty chemistry company in the marketing division for 13 years with a strong focus on Asia. In March 2020 I started the MS-Perspektive podcast in German and launched the website ms-perspektive.de. The echo was impressive positive, and I felt that this mission for patient education had to be done more professional. That’s why I became self-employed on the topic of multiple sclerosis by begin of 2022. Besides the podcast I work as a consultant on the perspective of MS patients to strengthen our various positions and advocating for a more balanced decision-making process with patients in the driving seat or at least co-pilots as this is our life. I am also booked as a speaker.
At this point, I would like to express a very big thank you to the Gemeinnützige Hertie-Stiftung, a German foundation that financially supports the high initial effort in the first year of the English podcast. Another big thank you goes to Prof. Tjalf Ziemssen, who has been advising and mentoring me as a neurologist since the end of 2008 and has always been helpful to me with both the German and now the English podcast.
My former jobs help me to simplify complex medical information into digestible portions that are still scientifically correct to work actively on the best possible life despite having multiple sclerosis.
If you want to know more about my personal journey with the disease, you can find all the answers in my autobiography, that is providing some inside views into my life with MS from 2003 until 2018.
What is my mission?
With the podcast, I want to educate, encourage, and let experts have their say. There will be episodes that are broad and others that are very specific to one aspect. I will not promise you anything that is impossible. Healing MS is part of it. At the moment, unfortunately, there is no cure for multiple sclerosis, that would be an unrealistic promise.
However, besides the basic therapy, there are many ways in which you can positively influence your disease. The more you know about these factors, the more consciously you can decide how you want to live. Because, of course, it is your life and all the tips I will give here are only recommendations. You must do well with your life and if you consciously decide for or against something, then that is your choice and completely okay.
What are my values?
I am very honest and direct and only trust facts that are backed up by studies. If I don’t know something, I will say so, dig into the subject, or leave the topic out altogether.
My personal life is very important to me so you will only get glimpses of selected areas. I am a family person and very grateful for my great friends, many of whom have been with me since before I was diagnosed.
Extreme exaggeration is not in my nature. If I’m convinced of something, I’ll say so, but I’m not going to break out into huge jubilant hymns here.
When there are pros and cons on topics in the podcast, such as disease-modifying treatments, I will try to make that as clear as possible. Because sometimes it comes down to a risk-benefit trade-off. I can’t give a pro or con recommendation there.
With the English podcast format comes a new challenge for me, the extreme differences in different countries in terms of access to screening, treatment, and financial support from the national healthcare system. I will talk to experts about what the scientific recommendations are for living with multiple sclerosis. And in interviews with MS patients and supporting organizations, I will try to shed light on the diversity in actual local care. I’m constantly trying to learn as I go and would be very happy if the visibility here in the podcast and the related blog posts makes a small contribution to greater equity in health systems around the world.
Show facts
The podcast will be released weekly, after a more intensive initial phase in the first two months. Since I have a young daughter, there may be personal unforeseen reasons that do interfere, which has never happened in the German podcast in the last three years. Let’s hope it stays that way.
The selection of topics will be quite broad. In addition to my personal experiences, other MS patients will speak about their journey with the disease. I will focus on the disease-modifying drugs that are available. Furthermore, I will interview experts on specific topics. Of course, topics such as nutrition, sports, family, travel, education, and career will play a role as well.
The episodes will range from 20 to 60 minutes, depending on the exact topic.
For the topics of the expert interviews, it will depend on when my interview partners have time. Because each person who takes extra time to be interviewed by me is a dedicated specialist. So, I can’t plan a specific order as these people are very busy due to the fact that they are all trying to improve our current and future life with MS.
In general, I’ll be the solo host of the podcast, and I’ll break it up with the interviews. And until my degree is complete, which is planned for late 2024, I will stick to my current level of knowledge for solo episodes and incorporate completed modules as I go. If you have specific questions or requests regarding topics you would like to be discussed in more detail, please contact me via email at nele@ms-perspektive.com or one of my social media channels.
Maybe you are facing a big hurdle right now and don’t know how to overcome it. Write to me about it. I look forward to reading from you. Please keep in mind, I want to provide you with a reliable source of important information, guide you on your journey, and support you as best I can. Because the good thing about multiple sclerosis is that we are a very large community, and no one has to live with the disease alone.
In the next episode I will tell you a bit more about my journey with MS. Starting from episode 2, it’s all about you. I look forward to continuing this journey with you. So, see you next time for another episode of „MS-Perspektive – The Multiple Sclerosis Podcast.“
See you soon and try to make the best out of your life,
Nele
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