Multiple Sclerosis? Don't be afraid. A 15-year experience report

By Nele Handwerker

Nele's journey began with a desire to visit a friend, but soon, she noticed issues with her eyesight. After a brief hospital stay and cortisone treatment, the diagnosis arrived a year later: Multiple sclerosis. Nele was initially shocked and dismayed, finding grim tales online about wheelchairs, loneliness, and unhappiness. However, she refused to give in to despair and chose to view MS as an opportunity to appreciate life more fully.

Embracing travel, pursuing a career, and personal fulfillment, Nele's story is a testament to MS not representing an end but rather a new beginning. She serves as an inspiration, highlighting how the disease can be managed gently with the right therapy and lifestyle. Moreover, she's making a difference by donating ten percent of her book's proceeds to the Dresden University Medical Foundation, supporting research and comprehensive care for MS patients. Join Nele on her journey of resilience and hope.

• Language: English
• Publisher: Nele Handwerker
• Release date: Nov 21, 2023
• ISBN: 9783947687084

Nele Handwerker

Nele Handwerker, born and raised in Dresden in 1980, was diagnosed with multiple sclerosis at the age of 23. But she didn't let this get her down. She worked in Chicago, went skydiving, scuba diving and saw the world. After 13 years in Berlin and one at the North Sea, she now lives with her husband, daughter and two gerbils on the banks of the Elbe in Pirna, just outside Dresden. In her podcast "MS-Perspektive", she shares her view of multiple sclerosis and reports on ways to positively influence the disease. She also provides information about new scientific findings, interviews experts and lets other patients have their say. Since 2022, she has been studying Multiple Sclerosis Management in the part-time Master's program as the only patient together with doctors. In her autobiography, she describes her first 15 years with MS: - Multiple sclerosis? Don't be afraid! A 15-year experience report In her free time, she reads books, listens to podcasts and music and spends time with her family and friends. The six children's books by Nele Handwerker are currently only available in German. The focus is on animal heroes who experience adventure and community despite their individual differences.

Book preview

Foreword

If you ask people, multiple sclerosis is the disease of a thousand faces. Inflammatory lesions in the brain and spinal cord can cause a variety of neurological abnormalities depending on the location where they occur—in other words, a thousand faces. This complicates the diagnosis and management of the brain disease, which usually appears in young adulthood and affects the respective patients throughout their lives.

The thousand faces are not only evident in the disease itself. Multiple sclerosis occurs in the wide range of people it affects, each of whom deals with it in their own individual way. The encounter of this neurological disease and the eventful developmental phase of young adulthood brings to the fore not only the management of the disease itself but also the way in which the disease can and should be integrated into one’s personal life story.

This means moving away from the medical thousand faces of the disease and toward the everyday life of the individual on whom the disease strikes. Listening to individual patients and learning how to deal with the disease can help us here. How does a life encounter diagnosis and therapy? How is it changed by it? Of course, no two medical histories are alike, yet only such a discussion can provide both patients and therapists with important insights regarding how to deal with the disease.

This approach is still a major challenge for all of us. The goal must be that medical progress reaches the patient, that the patient can make well-informed, conscious decisions, and that we manage to let the patient live his or her life despite the illness.

I hope that Nele Handwerker’s story can help us to go down this path. In her non-fiction book, she shows what her individual journey has looked like so far. Thereby, we learn about important processes in the management of multiple sclerosis. We know that it is a long road, yet we can see from Nele Handwerker’s story what has already been achieved in recent years. Above all, I wish the non-fiction book to fulfill its purpose: to inform and support.

Prof. Dr. Tjalf Ziemssen,

Head of Center for Clinical Neurosciences & Multiple Sclerosis Center of the University Hospital Dresden, Senior Physician and Deputy Director of the Neurological Clinic

My foreword

You may be at the beginning of your journey, you may have been living with the diagnosis for a long time, a loved one may have multiple sclerosis (MS)*, or you may simply want to learn more about the disease. In any case, I hope this book will give you hope and confidence, comfort, or suggestions on how to deal with the disease. That would make me incredibly happy. My goal for the book is to show that life with multiple sclerosis can be beautiful. For me, this includes regular visits to the neurologist, necessary examinations, a disease-modifying treatment (DMT)*, and certain adjustments to my lifestyle. MS is a very serious disease.

I am deliberately starting my personal story before my first episode to show you the fears I had at the beginning. The fear of not being loved, not knowing what MS meant for me health-wise, and being discriminated against or pitied by others. Over the years, my confidence grew that I could live well with MS. The past 15 years have been an exciting and intense journey, and so far, MS has not hindered any of my personal goals. On the contrary, it has taught me to live more consciously and to do good for myself. I worked in the US for a year and a half, experienced my first skydive there, and snowboarded down the slopes of the Rocky Mountains. My vacations took me to Australia, where I dove into the Great Barrier Reef, to Cuba when Fidel Castro was still alive, to the active volcanoes of Iceland, the arid paradise of Namibia, and ancient temples in Japan. I took up yoga, which made me more agile and emotionally stronger. For my job, I traveled to Asia several times and gained insights into the professional and personal lives of Japanese, Chinese, Koreans, Thai, and Malaysians. I’ve been writing books since late 2015 and this book is my sixth publication. Best of all, I found the love of my life, and since the end of 2018, we are the proud parents of a wonderful daughter.

I cannot look into the future, but I am very confident that my life will continue to be happy and content and that things in my private life will move me more than the disease itself.

Multiple sclerosis is called the disease with 1,000 faces because it progresses differently in each person. I have told my story here. There are at least 999 others, including many more positive examples.

I am convinced that I contribute to the positive course of the disease with my attitude and lifestyle. I make use of the levers that are available to me. These include a healthy diet, exercise, mental training, and meditation. As much as possible, I avoid stress in the sense of excessive demands. I’m also on a disease-modifying therapy that suits me, and I follow it consistently. My emphasis is on a happy and fulfilling family life and I try to resolve conflicts instead of suppressing them.

If you are a patient or a family member, I wish you only the best on your way and hope that the diagnosis will also bring you good things in life, let you live more consciously, and hardly or not at all restrict you. In case you are simply interested in multiple sclerosis and would like to learn more about the disease and its way of life, I wish you an interesting and informative read.

Over the coming years, more effective therapies will certainly be found. Perhaps even interrupted nerve pathways can be repaired in the foreseeable future. The ever-improving networking between doctors, scientists, therapists, and institutions in the fight against MS and its outcomes will bear further fruit. I am sure of it.

One example is the Charcot Multiple Sclerosis Master (M.Sc.) program that started in November 2022. It takes place in cooperation with Dresden International University (DIU). The students come from a variety of professional backgrounds, including physicians, pharmacists, therapists, scientists, and nursing staff. During the four semesters, they will be trained as MS specialists while working, mostly learning digitally.

The goal is to provide patients with treatments based on the latest knowledge without many years of delays. This includes starting a DMT as soon as possible after diagnosis because early intervention has been shown to inhibit disease progression.

I have been studying in the German version since August 2022 as the only patient representative to date to further expand my expertise in multiple sclerosis. I offer this expertise throughout my MS-Perspektive podcast episodes and corresponding blog articles to you.

There is a glossary at the end of this book with the most important technical terms, which are marked with an asterisk in the text when they first appear. These terms are explained in a simple way for non-physicians.

I hope that my journey from 2003 to 2018 with multiple sclerosis will give you strength and courage. Even if you do not have a direct connection to the disease, I hope that your curiosity about it will be satisfied.

Ten percent of the profits from the book sales go to the Dresden University Medical Foundation to further advance research and comprehensive care for MS patients.

Best wishes for your health and life in all aspects,

Nele

I. July 2003 until September 2005

My life before

I was 22 years young and had been studying media management in Mittweida for a year. On weekends, I often went to my hometown of Dresden, where I had a job and liked to go to bars and clubs with my friends in the evenings. My biggest worry was that someone else might show up at the party wearing the same outfit as me.

I enjoyed my studies and had a lot of variety. It consisted of media theory, business, and media technology. The subjects were broad, ranging from journalism to media psychology and business administration to technical and physical fundamentals.

I lived in a one-room apartment in a building complex affectionately nicknamed Alcatraz. Since it was a manageably large university of applied sciences, I knew my 60 fellow students by name within four weeks. Most of the professors could also call us by name after a quarter.

On Fridays and Saturdays, I worked as a student trainee for a mobile phone provider to earn enough money for my leisure activities. This included going to bars with my friends in Dresden’s Neustadt district.