Movement limitations in MS affect 90% of all patients. Learn how to maintain your strength, balance and mobility.

You can read the full article on my blog: https://ms-perspektive.com/018-movement-limitations

This episode is dedicated to the movement limitations caused by MS. Multiple sclerosis manifests itself in a wide variety of symptoms and it can also affect your overall mobility. To be mobile you need strength, coordination, balance and you need to be stretched. When one or more of these building blocks are affected, your mobility decreases.

Learn more about how these disorders occur, when they happen, what you can do about them, and what support services are available.

A word of advice right from the start: The best thing you can do is to buck the trend. So instead of limiting yourself and your life, try to exercise all the weak points on a regular basis, but also preventively the areas that are not affected.

Table of Contents

• When do movement limitations occur?
• How are movement restrictions manifested?
• What can you do if you have movement impairments?
• How can physiotherapy and occupational therapy help?
• How can you train strength, balance, coordination and flexibility yourself?
• What medications are available for movement limitations?
• Which aids can be considered in case of movement restrictions?
• Are there any surgical options?
• And if the movement restrictions remain permanent?
• What is the best prevention against movement impairments?
• Food for thought
• Question for you

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Stay as healthy as possible, well informed and try to make the most of your life, Nele

Get more information and positive thoughts in my free newsletter.

If you like the podcast, subscribe now to never miss another episode. By the way, you can find an overview of all previously published episodes here.

I am always happy to receive feedback, suggestions and questions. Also feel free to send me a picture of where and when you listen to my podcast or read the posts to [email protected] or use the contact form. That makes it more of an interactive exchange.

Paola Kruger is a patient expert from Italy and gives an insight view into the health care system and support options for people with MS.   You can read all questions and answers in my blog article: https://ms-perspektive.com/017-paola-kruger

Today I’m talking to Paola Kruger, Patient Expert at EUPATI in Rome, Italy. Paola lives with the diagnosis of multiple sclerosis herself and helps to improve the life of MS patients in Italy with her expertise. After sharing her own story, she provides inside views into the treatment, care and the challenges of the support system in Italy.

Table of Contents

• Introduction Paola Kruger
• Personal Experiences and Coping Strategies
• Treatment and Care in Italy
• Challenges and Support Systems in Italy
• Education, Awareness, and Advocacy
• Quickfire Q&A Session
• Farewell

Introduction Paola Kruger

My name is Paola, I live in Rome with two kids and two cats. I have a great passion for languages and clinical research. My interest in clinical research started after my diagnosis of MS, but ever since it has been so fascinating to understand how medicines are developed and what role patients can have in this process.

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

When they tell you that you can achieve your life objectives despite MS, please believe it, because you can!

How and where can interested people find you online?

You can easily connect with me on LinkedIn.

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A big thank you to Paola Kruger for her openness and all her engagement for people living with multiple sclerosis in Italy.

See you soon and try to make the best out of your life, Nele

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Click here for an overview of all podcast episodes published so far.

Fatigue is one of the invisible symptoms of MS and very distressing. But what is chronic fatigue and how do you best manage it? Learn more.   You can read the full article on my blog: https://ms-perspektive.com/016-fatigue

Today we’re talking about fatigue, an invisible MS symptom with a big impact on daily life. The article is part of the series about MS symptoms. What is chronic fatigue? What factors cause fatigue? And what is the best thing to do about it?

Table of Contents

• When does chronic fatigue occur?
• Which areas of life does fatigue affect?
• What’s causing it?
• How do you best deal with fatigue?
• What helps with chronic fatigue?
• What is the best prevention against fatigue?
• What else can you do against fatigue?

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Stay as healthy as possible, well informed and try to make the most of your life, Nele

Get more information and positive thoughts in my free newsletter.

If you like the podcast, subscribe now to never miss another episode. By the way, you can find an overview of all previously published episodes here.

I am always happy to receive feedback, suggestions and questions. Also feel free to send me a picture of where and when you listen to my podcast or read the posts to [email protected] or use the contact form. That makes it more of an interactive exchange.

Pieter van Galen is a patient advocate from Belgium who give insight into living with MS in his country and national health care offers.

You can read all questions and answers on my blog: https://ms-perspektive.com/015-pieter-van-galen

Today I welcome Pieter van Galen as my interview guest and we are talking about living with MS in Belgium. Pieter is a patient advocate at the European Multiple Sclerosis Platform (EMSP) and has a long history with Multiple Sclerosis, as he had his first problems as a kid, when he was nine years old.

His positive attitude is wonderful and surely helps him to enjoy life in the best way day to day. So get inspired by Pieter and learn about MS care and the supporting system in Belgium.

Table of Contents

• Introduction Pieter van Galen
• Personal Experiences and Coping Strategies
• Treatment and Care in Belgium
• Challenges and Support Systems in Belgium
• Education, Awareness, and Advocacy
• Quickfire Q&A Session
• Farewell

Introduction Pieter van Galen

Pieter van Galen is a patient advocate who works at European Multiple Sclerosis Platform (EMSP). He is a trainer and consultant and lives with his wife and two daughters in Overijse, Belgium.

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

Live day by day, and plan for the future (look at what you can still do and enjoy life).

How and where can interested people find you online?

On LinkedIn: https://www.linkedin.com/in/pieter-van-galen-aa30b84/

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Many thanks for Pieter for providing such a good overview on the health care system, treatment options and available supporting offers for people with MS in Belgium.

See you soon and try to make the best out of your life, Nele

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Click here for an overview of all podcast episodes published so far.

Dr. Claudia Marck explains the benefits of smoking cessation for multiple sclerosis patients and presents strategies for successful quitting.   You can read the full interview on my blog: https://ms-perspektive.com/014-smoking

Today I talk with Dr. Claudia Marck about smoking and its impact on multiple sclerosis. Claudia gives tips on how to successfully become a non-smoker. She knows what she is talking about as she used to smoke intensively herself and it took her several tries to finally stop. But she has been a non-smoker for 15 years now and is very happy about it.

We talk about how smoking increases the risk of disease onset and worsens prognosis. And after providing all the evidence on why you should quit, Claudia shares proven methods on how to achieve that goal.

This interview was originally recorded for the German MS-Perspektive podcast in April 2023. Since the content is so important, I am publishing it for the English podcast and blog again

This podcast episode and blog post exist in German as well.

Table of contents

• Introduction of Dr. Claudia Marck
• Personal motivation for your career choice
• Smoking and MS – existing evidence
• Strategies to quit smoking for people with multiple sclerosis
• Which breakthrough in research or treatment for people with MS would you like to see in the next 5 years?
• Farewell

Introduction of Dr. Claudia Marck

Claudia is Dutch by birth and moved 15 years ago to Australia. She helds a position as Senior Research Fellow at Melbourne School of Population and Global Health

How and where can interested people follow your research activities?

They can keep an eye on my University website

https://findanexpert.unimelb.edu.au/profile/190165-claudia-marck

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

I want to put in context that quitting smoking and avoiding passive smoking is one part of healthy behaviour which also includes looking after your mental health, being physically active, and enjoying a healthy diet.

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Many thanks to Dr. Claudia Marck for the original English interview on the important topic of smoking cessation. And for allowing me to reproduce the short form of the interview in German.

See you soon and try to make the best out of your life, Nele

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Click here for an overview of all podcast episodes published so far.

 

Falls happen often to people with MS and they can make a problematic situation more severe. But how can they be prevented. We talk about it.   You can read the transcripted version of the interview on my blog: https://ms-perspektive.com/013-laurits-madsen

Today I’m talking with Laurits Taul Madsen about how falls can be prevented for people living with MS. What reasons increase the risk of falls and what effective countermeasures you can take? The better shape you are in and the healthier your bones are, the less serious falls are and they also occur less often. For sure a very important topic as falls happen very often for people with MS.

Table of Contents

• Introduction - Who is Laurits Taul Madsen?
• Severity of falls caused by MS
• Reason for falling MS
• How to prevent falling
• Farewell

Introduction - Who is Laurits Taul Madsen?

My name is Laurits. I’m from Denmark, a PhD student in Aarhus, working with Professor Ulrik Dalgas. I’ve studied sports science and was done in 2018 with my master’s. And afterwards I was hired as a scientific research assistant on the COGEX project, the cognition and exercise, big project on progressive MS and cognition. And in 2021, I started my PhD, which is an exercise. And we try to look at these booster sessions, so how can we keep people active over time? And when I’m not doing research, I live in the countryside with my wife and little daughter, Gertrude. And I like to play golf when there’s time for that. But it’s not a lot of time with both work and kid. 

How and where can interested people follow your research activities?

I think if they follow on LinkedIn there, we usually put most of our research up on LinkedIn. And if they want to dig even deeper, the research gate is a good place. Researchgate.net, here you can find all your favorite experts and follow their latest research. 

Laurits Taul Madsen on:

• LinkedIn
• ResearchGate

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

Do exercise. No, I don’t think I have any specifics. But it’s important to say that when we talk about, we have a tendency to track our own theme or topic up and perhaps forget a bit about other things. Now we look at falls and neuromuscular function, but fall is one symptom. There are a lot of other symptoms and neuromuscular function is only one part of the risks in falling. So there are a lot of other symptoms important for this as well. So, we need to be open. I think that’s my advice to other researchers and general people with MS, that there are a lot of symptoms and a lot of different ways to improve the different symptoms. 

Nele Handwerker: Laurits, thank you very much. Thank you very much for all your research you have done so far with your colleagues. And I will follow the things you are doing on LinkedIn and maybe you are coming at another point back to the podcast.

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Maybe you are interestes as well on this article and podcast episode:

• #009: Motoric Cognitive Risk (MCR) Syndrome in MS. Interview with Dr. Alon Kalron

See you soon and try to make the best out of your life and start your workout or keep doing it, Nele

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Click here for an overview of all podcast episodes published so far.

Multiple sclerosis is called the disease of 1,000 faces because symptoms vary widely from patient to patient and over the course of MS.

Here you can find the full article to read through again and lots of additional content: https://ms-perspektive.com/012-ms-symptoms

This time it’s all about MS symptoms and giving you an overview of what can be related to the disease. Because especially at the beginning, the variety of problems is not always clear to you. And it is important for your healthcare professional (HCP) to know how his or her patient is doing and whether, for example, the chosen disease-modifying therapy is working. Multiple sclerosis is called the disease of 1,000 faces for good reason, as it progresses differently in each patient and there are a variety of possible symptoms. That’s why it takes many years for some patients to finally receive the right diagnosis. 

MS Symptoms at the beginning

Please be aware, that most patients will have only a selection of the symptoms mentioned below and will likely encounter a few different ones over the course of the disease.

The following are MS symptoms that typically occur at the beginning of the disease:

• Sensory disturbances (numbness, tingling, burning pain),
• impaired movement (weakness, stiffness, clumsiness, problems walking),
• Visual disturbances (double vision, blurred vision, decreased color perception)
• and fatigue (rapid physical and mental fatigue).

Please keep in mind:

It is important to treat each MS symptom as best as possible to reduce stress levels in the body. This helps to reduce fatigue, increase quality of life, and reduce inflammatory activity in the body that can be caused, for example, by multiple bladder infections per year.

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Stay as healthy as possible, well informed and make the most of your life, Nele

Get more information and positive thoughts in my free newsletter.

If you like the podcast, subscribe now to never miss another episode. By the way, you can find an overview of all previously published episodes here.

I am always happy to receive feedback, suggestions and questions. Also feel free to send me a picture of where and when you listen to my podcast or read the posts to [email protected] or use the contact form. That makes it more of an interactive exchange.

Lori Schneider was the first woman with MS to climb the seven summits including Mount Everest. Adventure was her way to fight for her health. You can read the full interview on my blog: https://ms-perspektive.com/011-lori-schneider

Lori Schneider decided after her MS diagnosis to focus fully on adventure, climbing the highest peak on each of the seven continents. To do so, she trained hard, quit her job as a teacher, left her husband and took out a loan to cover the costs of this undertaking. She achieved her goal and has since taken many people with multiple sclerosis, as well as the general public, on her personal journey in presentations, including a TED Talk where she impressively described the act of strength it took to fight her way up Mount Everest step by step.

In the interview she gives insights into her life with MS and her philosophy to live her own dreams and to regain self-confidence in her own physical and mental strength.

Table of Contents

• Introduction – Who is Lori Schneider?
• MS diagnosis and status
• Climbing beyond limits
• Experiences and coping strategies
• Education, Awareness, and Advocacy
• Quickfire Q&A Session
• Farewell

Introduction – Who is Lori Schneider?

At age 52, Lori Schneider became the first person with multiple sclerosis to summit Mt. Everest. Lori is also the first with MS to climb the highest peak on each of the 7 continents, known as the Seven Summits.  She reached the summits of Mt. Kilimanjaro, Mt. Elbrus, Denali, Aconcagua, Vinson Massif, Mt. Kosciuszko, and Mt. Everest.

Now, at 67 years old, Lori continues to live an active life, along with her husband. Together they enjoy hiking in Arizona, boating on Lake Superior in Wisconsin, skiing in the mountains, and traveling. She continues to give presentations globally, and remains an advocate for those living with neurological disorders.

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

Never giving up on your dreams. It’s all about moving beyond your ‘preconceived’ limitations, and finding your own Inner strength.  It’s about your mindset and choosing to be resilient, and living with gratitude for all that you still have in your life. A positive attitude creates positive outcomes.

How and where can interested people find you online?

Email: L[email protected]

Website: www.LoriSchneider.net 

Follow the adventure on Facebook and Linkedin

 “My goal is to empower others to move beyond their labels and limitations and live their dreams.”

~Lori Schneider Empowerment Through Adventure

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I hope you got insprired by Lori and can find the strength inside you to go for your dreams no matter how long it takes. And as Lori stated do it one step after the other. That way incredible journeys are possible.

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.

The evaluation of many studies worldwide has shown that the disease-modifying therapy (DMT) is the best tool against the progression of MS.

You can read through the whole article on my blog: https://ms-perspektive.com/010-dmt

This time we are talking about the disease-modifying therapy (DMT), which according to most experts is one of the most important pillars in the treatment of people with multiple sclerosis. And I absolutely agree with this opinion.

In the best case, the disease-modifying therapy (DMT) prevents the inflammatory activity completely or slows it down at least strongly. Especially for the relapsing-remitting course of MS there are now a variety of therapies from mild to highly effective, depending on which intensity level is needed.

Table of Contents

• Introduction into DMT
• Understanding Multiple Sclerosis
• The Role of Disease-Modifying Therapy (DMT)
• Types of Disease-Modifying Therapies (DMTs)
• Effectiveness and Progression Prevention
• Considerations for DMT Selection
• Future Directions in DMT Research

  Introduction into DMT

Currently, you can’t really repair existing damage. The body can partially rebuild destroyed myelin at a young age, but not to the same quality as it originally existed. And the ability to remyelinate diminishes over time. In addition, at a young age remyelination and a higher inflammatory activity are opposed to each other. As a result, partially fresh remyelinated areas are immediately attacked and destroyed if the inflammation at the site has not yet come to a standstill but continues to smolder.

There are also initial therapies for the progressive forms of MS that can slow the progression. Here, the key disease process is neurodegeneration, i.e. the death of nerve cells, which unfortunately is not yet as well understood and treatable as the acute inflammatory activity. Researchers are working intensively on the subject. Other drugs are in phase 3 studies or are being investigated in earlier stages of development.

In an upcoming episode, I will share key advice and findings from research summarized in “Brain Health. Time matters in multiple sclerosis.”

This report was compiled by an international team of experts and is based on the analysis of a large number of studies on multiple sclerosis.

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I hope this gave you an overview about what a disease-modifying therapy is, what advantages it offers in the long-run, what needs to be considered when choosing the right one for you and how future developments will increase our quality of life even more.

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.

The Motoric Cognitive Risk (MCR) Syndrome combines cognitive and physical symptoms that increase the fear and actual risk of falling. You can read the transcripted interview here in full length: https://ms-perspektive.com/009-alon-kalron  

Today I’m talking with Dr. Alon Kalron about the Motoric Cognitive Risk syndrome (MCR) and what it means for people with MS. MCR describes the combination of physical and cognitive symptoms that, along with a fear of falling, lead to a higher likelihood of actually falling. And you can imagine that it’s much better to prevent falls when you have MS, as the recovery time is usually longer and it can have further negative effects on quality of life and disease progression.

That’s why Alon provides insights into the topic and tips on what to do preventively.

Table of Contents

• Introduction - who is Alon Kalron?
• Understanding Motoric Cognitive Risk (MCR) Syndrome in MS
• The Relationship between MCR and MS
• Managing MCR in MS Patients
• Lifestyle, Support, and Advocacy for MS Patients with MCR
• Farewell

Introduction - who is Alon Kalron?

My name is Dr. Alon Kalron. I’m professional physical therapist working in the field with MS, a little over 15 years already. I have been working as a clinician also at the Sheba MS Center. It’s the largest center in Israel following over 4,000 patients with MS. In Israel, we have about 8,000. And also, I’m chair of the Department of Physical Therapy at Tel Aviv University at the faculty of medicine.

How and where can interested people follow your research activities?

Dr. Alon Kalron: So, you can follow me in the LinkedIn. In the LinkedIn, from now and then I certain posts about my activities, mainly research activities, groups that I’m involved with, research groups. So that could be a place to look me up if you want. #00:33:05#

Search on PubMed

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Alon, thanks a lot for sharing all that positive insights and making people to think about that every move counts. And that it doesn’t have to go in one direction. You can turn that into a positive side if you start to train your mobility, train your cognitive functions, and you can regain things. Of course, it’s always better to preserve. You mentioned that a couple of times. But it’s also positive possible in the progressive state to gain back mobility and all that. Great. And thanks a lot for all your research.

See you soon and try to make the best out of your life for example by staying or becoming active as much as possible, 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.

  This podcast is supported by #mitMiSsion a project of the non-profit Hertie Foundation.