It is time to pass on this project. We both, Marion & Marta, have started, now there must be heirs…
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Silvia König-Schöpf“I am Silvia, my husband is affected by MSA C. I was born in a small town on the beautiful Rhine. Then I moved to Mainz. Until today I love this city and its people. There I met my husband and went with him to Munich in 1981 (big sacrifice!). In the meantime we have been married for 38 years and have two grown-up children. |
| The first symptoms such as rare balance problems, slurred speech and falls occurred in my husband in 2017, diagnosis at LMU Munich in June 2021. Since then, many things have worsened and new symptoms have been added.
What does the modern person do to inform himself? He looks at what the Internet offers in terms of information. What I found there at first was very scientific and just horrible. Until I came across this blog by Marta and Marion. Respect and a big thank you to both of them for getting something like this up and running, and for bringing patients and meanwhile also relatives together. The exchange (also in the online meeting, Whatsapp, Facebook) is incredibly valuable! There are many helpful tips on aids, dealing with authorities, and very important: you no longer have the feeling of being so completely alone. Everyone knows what you’re talking about. The worst thing for me personally was to explain what kind of disease MSA is and that there is still nothing that can stop it. If I am asked today, I say – have a look at leben-mit-msa.de. This blog simply has to go on. It is a matter of the heart for me to do this in Marta’s and Marion’s sense.“ |
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Frank“Frank. Born in 1965, I have been living in Nuremberg for 2 years. I studied physics (+informatics and microbiology), got my PhD in biophysics, worked as a management consultant and have been with a global automotive supplier for quite some time. |
| I was always the youngest. I graduated at 24, got my doctorate at 27, wanted to do something new at 30, and moved first to management consulting and later to the global supplier. Under 40, I was responsible for 950 people in 10 countries. But I was an exotic, changed the area, did something new again, had to learn not to give more than 100% professionally.
A short time later my wife first got cancer and died after a ¾ year fight. I was left with 2 minor sons, 2 residences (Sauerland, NRW and during the week Bensheim, Hesse) and a lot of pain. I spent 2 years taking care of my sons, saying goodbye to my wife, friends, traveling and getting back on my feet professionally. Since the end of 2013 I am with Kim, since 2014 we live in Franconia (where she lived for a long time) and in the summer we got married. We each had 2 children, now we have 4. The oldest (26 years) and the youngest (17) still live with us. Besides family and friends, sports (running), photography, travel and cars (classic and now electric), my wife and I had become involved with an NGO for Africa and ran an Escape Room as a limited company. With the disease and pandemic, we retired from an active role with the NGO and sold the limited company. During my PhD I had first contact with research on membrane proteins and prions (the causes of MSA), am also currently involved with research and development projects in different areas. MSA symptoms I have since the fall of 2018 (unexplained falls, REM sleep disturbances,..), a medical indication of problems starting from the cerebellum in January 2019. After extensive investigations, it was first called psychosomatic, until in November 2020 on the initiative of my father (former professor of medicine in Berlin) a MSA-C diagnosis. Similar to Marta, I am changing a lot. My welted shoes, the shirts with cufflinks and my (passion for) suits went to my sons. Myself, I wear only sneakers and rarely suits, I am more and more often unshaven. My speech and posture are increasingly deteriorating..“ |
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