Welcome to episode 41, the last of 2023, in which I look back and review the year with you. Then there’s a look ahead to 2024, well aware that life always has its own ideas and that while planning is helpful, it doesn’t always happen in the same way.
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Table of Contents
Highlights of the year 2023
Let’s move on to the highlights of 2023. I published a total of 42 new episodes, starting with the launch of the international MS-Perspektive podcast on August 30 and ending with today’s roundup. Of these, 12 were episodes with experts on a wide range of topics. In 11 podcasts, I talked to other MS patients, mostly patient experts from different countries, about local MS treatment and a further 19 episodes were solo episodes.
The podcast has already been streamed in 33 different countries via the classic podcast platforms. The USA, Germany and the UK are currently the leaders in terms of download figures. There are also listeners via YouTube, where the breakdown is more difficult because the German and international podcasts converge there.
The top 3 contributions this year were:
- #038: Brain health. Time matters in multiple sclerosis – Summary of the report
- #006: Interview about the international MS-Community Austria and more with Tania Pilz
- #026: Cognitive disorders in MS – when the mind goes on strike
Next year, this evaluation will be even more interesting when the range of topics is broader and the time period longer.
Personally, I am very pleased that I am getting an international picture of MS treatment through the exchange with national patient advocates and patient experts. And I hope that we can all learn from each other in the end. Being able to interview experts from around the world opens up a wide range of possible topics.
A big thank you goes to the non-profit Hertie Foundation, which is supporting the development of the international MS Perspektive Podcast for one year, and the Multiple Sclerosis Center in Dresden, Germany, under the direction of Prof. Dr. Tjalf Ziemssen, who made it possible for me to apply for project funding in the first place. The desire to take the concept of the German MS-Perspektive podcast to an international level had been growing inside me for a few months, but without the generous support, it would probably have remained a wish for much longer.
After the intensive start with 30 episodes in the first 60 days, the rotation has now changed to a weekly release every Wednesday. And the English expert interviews are translated with a time delay and also published on the German podcast.
In addition to numerous international consulting projects as a patient advocate, a visit to ECTRIMS 2023 in Milan, Italy, was another highlight. This year’s MS conference took place there, which is the largest in the world and was attended by over 9,000 experts. Three days packed with lectures on living well with MS, new scientific findings, even more questions arising from this and all this in beautiful Milan together with the majority of my fellow students from the MSM Master’s program.
Personal developments and highlights
My 2nd pregnancy
First and foremost, of course, is that I am pregnant with my second child and our family is expected to grow to four at the end of March 2024. After all, I had my first MS relapse 20 years ago, an optic neuritis that put me in the CIS, clinically isolated syndrome category. And in 2024, it will be 20 years since the diagnosis, which was made a year later in 2004, due to new lesions in the MRI.
At this point, I would also like to encourage you once more to live your dreams, which for many includes the desire to have children and family planning. The treatment options for MS are constantly improving, both in the prevention of new activities and in the management of temporary or permanent symptoms. Children are a great enrichment and above all need love, understanding and security, not perfectly functioning parents. But if you don’t want children, that’s just as fine. Everyone should live their life according to their own ideas and if MS puts hurdles in your way, then try to overcome them with the help of support from other people and social, technical, medical and other services, but stay on your path.
But back to me. As part of my pregnancy, I am taking part in a study at the MS Center Dresden and the MS Fertility Register in Bochum, both in Germany. Because only through meaningful and pragmatic studies can knowledge about specific aspects of MS grow and hopefully concerns will be reduced bit by bit. If there are similar non-interventional studies in your area, it would be great if you could take part in them.
Apart from a slowly increasing need for more rest and less wild playing with my five-year-old daughter, I don’t feel any problems or restrictions. But please remember that pregnancy with MS should be managed by neurologists in addition to gynecologists.
The Multiple Sclerosis Management Master's program
My personal growth clearly includes the progress and knowledge I have gained as part of the Multiple Sclerosis Management Master’s program. This calendar year was all about the clinic, diagnostics and practice, including differential diagnostics, in order to prevent both false positive and false negative diagnoses and to be able to use the treatment window quickly. This is because the majority of experts agree that the earlier action is taken against the progression of multiple sclerosis, the better the long-term results.
This was followed by the studies and statistics module. Very challenging, but also important in order to better understand and classify study data. This is because studies must be sensibly structured, evaluated and the findings applied in practice if they are to be scientifically proven, or in other words evidence-based medicine.
The current focus is on drug therapy, which can be used acutely during a relapse or preventively in the form of disease-modifying therapy. Thanks to scientific progress, there are now many options that should always be selected according to the person and their life situation, and long-term therapy strategies must also be considered, for example, if there is a desire to have children or to initially get a highly active course under control quickly.
I am also very happy to be able to get to know so many experts who give lectures here. As a result, I want to discuss many more topics than I am able to cover. This is because each expert receives a questionnaire from me in advance that matches the topic. I have to work it out first and then it doesn’t always end up being recorded. Because all these experts are committed and have a lot to do. My interview request is one of many and sometimes falls behind.
Self-fulfillment and accomplishment
With all the work that the German and now international podcast entails, alongside family life, studying and setting up my own business, one thing is clear: my work makes me very happy and fulfills me. Because I can help you on your journey with MS. And I regularly get positive feedback in return, which is always good, but even more so when things get busy or I’ve taken on more than I can manage.
So please don’t stop letting me know if you particularly liked a post or would like more insight into a specific topic. I’ll try to take it into account and include it in an upcoming episode. But never forget that I am not a doctor. I study with neurologists or those who are still in specialist training and for good and comprehensive treatment you need to know about more than just multiple sclerosis. This is because our body and medication are constantly interacting with each other. Test results do not have to be considered and evaluated individually, but in context, and I cannot do that.
I can help you to ask the right questions, develop a good understanding of the disease and know how you can have a positive influence on MS. But the experts remain the trained practitioners from the various fields.
Recognition which does good
Just a few words about the launch of the international podcast. It was great to hear how much easier it is for me to get experts for interviews because I have a successfully established German podcast and great interview guests who are internationally known and thus an expression of my serious work. This has often made me proud in recent months.
My German interview guest Dr. Haagen Kitzler, a neuroradiologist, also made this statement in an interview. One tip from his former mentor was to find a niche. Because you can make a difference quite quickly in a niche and achieve really great things in the long term. I think the emancipation and education of every single person with MS is a wonderful achievement. Because well-informed people can cope much better with the diagnosis of MS and, in the vast majority of cases, lead a fulfilling life with few restrictions.
The MS community and its role
A big thank you to you for listening to or reading the contributions, for the exchange, for your feedback that you have given on a platform and for recommending the podcast. That means a lot to me. And of course I’m also happy about the one-to-one exchange with you, which sometimes takes place on specific episodes, but also on all kinds of other topics related to MS. And another thank you goes to all my interview guests.
It is not a matter of course to openly share your personal journey with the disease and give the community an insight into your own life. But it feels so incredibly good to know that you are not alone and that you can find your way out of the depths.
I always find it amazing what kind of people I can meet because we share the same diagnosis.
And a big thank you of course goes to all the experts who have been my guests, but also to everyone else who works every day to ensure that life with multiple sclerosis can continue as unaffected as possible and that the disease only plays a minor role. Unfortunately, this is still not a reality for everyone, but many clever and motivated people are working to ensure that one day the time will come and this future will become more tangible.
Special thanks go to Prof. Tjalf Ziemssen, who has supported me optimally as a treating neurologist since the end of 2008, but has also promoted the German and international podcast from the very beginning and whose entire team does a great job and continuously drives innovation.
Podcast development and plans for 2024
I have already consulted many experts for 2024, with a focus on rehabilitation, preventive treatment, but also on dealing with everyday life with work and family. I would also like to interview more patient experts from various countries and introduce important platforms that contribute to patient education internationally
I’m planning a series on the individual approved disease-modifying therapies that I’m currently studying in the current module. At the moment I’m still thinking about which information modules to include, so give me a little time. And since babies sometimes come earlier than expected, the planning can get mixed up.
And at this point I would like to make it clear once more: there is not one therapy that works for everyone, but rather different advantages and disadvantages and higher or lower probabilities of effectiveness. Therefore, the best possible therapy for an individual patient must always be found and certain strategic decisions made. It is a dream of treating neurologists to know exactly which medication will work best for an individual with just one or a few tests. But this dream has not yet come true.
In any case, I will try to ensure that the podcast continues to appear regularly on Wednesdays and that I have simply prepared enough episodes to fully enjoy the first few weeks of new family happiness without having to be busy. So don’t be surprised if I don’t answer any messages for a few weeks.
Personal goals and expectations for 2024
My personal goal in 2024 is to devote enough time to my family, podcast and studies. I don’t want my daughter, her new sibling, my husband, extended family and friends to miss out, nor the two podcasts and my studies. Yes, it’s demanding to study on the side and publish two new podcast episodes a week, but I’m going to try. Thanks to my greatly increased knowledge thanks to my studies, research definitely takes less time. And as my dear parents are fortunately healthy and fit, they will certainly support me a little with childcare so that I can always do an interview during the day.
I don’t yet know whether I’ll finally get around to writing another book or at least recording my experience report as an audiobook. I’ll leave that in the wishes section. If it works out, great. But if I’ve achieved my primary goals with family, friends, podcast and studies by the end of 2024, I’ll already be very proud of myself.
Closing
Thank you again and please let others know about the podcast and the website so that they can also benefit from positive information about MS and become empowered patients. And if you haven’t read my memoir yet: „Multiple Sclerosis? Don’t be afraid! A 15-years experience report.“, please order it directly from me and support me and not the big companies that only transfer a small amount back to me. And if you haven’t already done so, then subscribe to my newsletter to receive interesting information about MS and find out very quickly when I have published new books.
By the way, the next episode will be about another MS symptom, namely movement restrictions and how you can best maintain your strength, balance and mobility.
See you soon and try to make the best out of your life,
Nele
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