Marion Fischer lives for working with people. The 22-year-old is a curative education nurse and works in a children's and youth hospice. She recently learned how important it is to give everyone a place in the middle of society when she was diagnosed with a rare form of Parkinson's disease. What she is fighting for and how she rolls otherwise, she tells us on REHACARE.com.
Name: Marion Fischer Age: 22 City: Near Lake Constance Occupation: Curative education nurse Disability: Hemidystonia caused by a rare form of Parkinson's disease
Marion Fischer: A day on which I can bring a smile to the faces of sick children and their families in my work at the children's hospice and give them beautiful moments. And days on which I can get up, walk short distances together with my physiotherapist and notice that things are moving forward.
Which auxiliary means or daily living aids are indispensable for you?
Marion Fischer: Currently, my wheelchair, which allows me to get around; my orthotics and my Bioness L300 Go, which give me support and stability when standing in physical therapy and also allow me to make small walking attempts there with the help of the therapists; the Exopulse Mollii Suit (my personal superhero suit); and a trunk stabilization belt.
What would you like to see from society and your fellow people in dealing with people with disabilities?
Marion Fischer: People with disabilities (in whatever form) have just as much right to have a place in the centre of our society and not just on the edge of society.
It can happen to anyone suddenly that they are affected by a disability. Through an accident, illness or something else – it can happen from one day to the next. So take care of your fellow human beings and treat them as you would want them to treat you. There still needs to be a rethink in many people's minds.
Oh yes, and more accessibility. If you're not in a wheelchair, you're not aware of it – but there are so many obstacles. Even if it's just a step – for someone in a wheelchair it's already an obstacle to enter this shop, this restaurant, etc.
Which assistive device would urgently need to be invented and/or improved?
Marion Fischer: There are already many good and modern aids, but the problem is usually how health insurance companies cover the costs. This should be improved urgently! Despite proven effectiveness (via tests of the aid), the health insurance companies reject it far too often. The person has to fight for everything they need. Nevertheless, many aids that would give the person back quality of life, independence and here and there a little bit of self-determined life are rejected. With reasons that are often incomprehensible.
Regular physiotherapy is an important support for Marion Fischer. The Exopulse Mollii Suit from Ottobock also helps her a lot.
What has been your biggest challenge so far that you have mastered – and what has helped you?
Marion Fischer: Especially lately, I've had to deal with health setbacks again and again. Most recently at the end of August. A sudden and massive setback that currently forces me into a wheelchair. Fighting my way out of these situations and moving forward again is one of my biggest challenges so far – but one that I will definitely try to master! My friends, family, my physiotherapists and ergotherapists are a great help and support. Without them, this would not be possible.
What can the assistive technology industry learn from the Corona pandemic to make life easier and/or better for people with disabilities in the future? Marion Fischer: Direct contact with the people / users of assistive devices directly. Exact adjustments or trials of assistive devices are not possible by telephone or online. In the assistive technology sector, personal exchange and contact with the users should remain in the foreground.
If nothing was impossible: Who would you like to meet one day and why?
Marion Fischer: The German Minister of Health – to give him a true insight into the situation in nursing and the other social sectors. I experience the field of nursing very closely on a daily basis through my profession. It is not "only" 5 to 12 and it is not "only" due to the Corona pandemic! Not everything is shown in the media. After all, care is about all of us.
What was your best REHACARE experience?
Marion Fischer: Unfortunately I haven't been there yet, but I definitely want to go in the future!
What I wanted to say...
Marion Fischer: Your dream can come true if you have the courage to follow it!