By Marlies Opstoel
My name is Marlies, and I am 27 years old living in Belgium. Three years ago, I lost my mom Trui Derycke, age 55, to MSA. She had been diagnosed with Parkinson’s disease in 2014 and was later, after many doctors appointments, diagnosed with MSA.
It had been a rough couple of years, watching her getting worse and worse. It started with not being able to write anymore and resulted in not being able to walk anymore, not being able to eat anymore and the worst was her not being able to talk anymore. We took care of her at home for as long as we could. We adapted our house (with money my sisters and my friends and I raised by organizing a benefit); we had medical caregivers at home; and we kept communicating with her by using a paper on which the alphabet was written so that she could slowly form sentences. She never complained. She still enjoyed life even if her world was getting smaller and smaller each day.
Later, in June of 2019, she started having trouble with her breathing, so she needed an oxygen machine. It kept getting worse and her illness was progressing really quickly. She always kept pushing her boundaries, but she started feeling like she didn’t have many boundaries left she could keep pushing. She always looked back at how far she had come, but this time, she looked at her future and told us she didn’t see a future anymore.
That’s when she decided she wanted euthanasia. It was a heartbreaking choice, but we respected her choice. It was her life, her world, that was getting too small. We knew we only had one month left with her so for the whole month, we did everything we could. For that last month, she stayed at a palliative care unit where the nurses were so kind, so amazing. We were there with her 24/7, even slept in her room on our inflatable sleeping mats. We gave her everything she wanted, like getting her favorite food and drinks, playing her favorite music. She still enjoyed everything until the last minute. She still had a big smile on her face.
Sadly, on August 2, 2019, she had her euthanasia and so she passed away. She also donated her brain for research, hoping it can someday help others who are suffering from the same awful disease.
She was so full of life and never ever gave up. She kept pushing her boundaries, and I will always admire her for that. And I really do hope that I have some of her strength in me.
My love goes out to anyone suffering from MSA and their families.
Euthanasia or Death with Dignity is only available in a select few U.S. states, and The MSA Coalition seeks to share experiences like this with the MSA community to provide options. We encourage our community members to discuss all options with a healthcare team, family, and close friends before making a decision. Find more resources on medical aid in dying here.
