Please share any updates since your last interview.
My life with FA is full of change: In recent (about 4) years, transfers from the wheelchair to, for example, the toilet/ the couch/ my bed/ the shower wheelchair have become more difficult. I can still pull myself up from the ground using a bracket, but I cannot reach the bracket on my own. So if I fall, I cannot get up on my own anymore. Fortunately, I enjoy finding innovative solutions that work.
I started using an active lifter for some transfers. I am very enthusiastic I can use this lift independently and the lift also maintains my leg muscles as I am brought into a standing position in the device. I also have extra brackets to make movements easier and safer. Since the summer of 2022, I also have a new housemate: my assistance dog Vello. Besides giving me a lot of fun and love, he helps a lot. He takes over many activities that require me to bend and reach, which reduces my falls and maintains my independence. Next summer I will probably get another new roommate: my boyfriend! We have been together for around a year — the biggest positive change of the last year.
My weekly schedule has changed: I always start my days with nurses. This change was difficult to accept but fortunately, it worked out. I enjoy the possibility of living independently, eating well thanks to the breakfast and lunch they prepare, living clean, and I have energy and time left for things other than daily care.
I no longer work part-time at the university but spend a lot of time on various volunteer work. I have helped several refugees (with physical disabilities) start their lives in Eindhoven as a social counselor. I am still active for the muscle association and my usual contribution is filling the Dutch FA newsletter. In 2021, I and three others founded a foundation supporting (scientific research regarding) FA. I am committed to Stichting- FAN (www.stichting-fan.nl) with great enthusiasm and passion and this takes up more and more time.
I share my love for sports with my boyfriend. When the weather permits, we regularly go out with our handbikes. He also introduced me to frame running — a sport that makes it possible for wheelchair users to walk/run again. My boyfriend has done this sport a lot during his whole life and we want to take it up again. I would like to practice an additional sport where I train my leg muscles. Unfortunately, I swim less because dangerous situations regularly occur where I choked on water. It was also difficult to organize all the help I needed (including changing clothes).
I still love to travel. In recent years I have visited Lithuania, Copenhagen, New York, and Cyprus, among others. New places, new experiences and regular meetings with new FAmilies!
In recent years, I have met many others with FA, some of whom are now good friends.
Sad moments definitely existed in recent years, but the positive moments certainly dominate. I enjoy my life, thanks to everyone who contributes!
When did you start Stichting-FAN?
In 2020, I was involved in organizing rideATAXIA Europe in the Netherlands. The event did not take place until September 2021 due to COVID-19. Just before this event, Stichting-FAN was founded. We wanted to raise money for FA research in the Netherlands. No organization in the Netherlands could achieve this before Stichting-FAN.
What do you enjoy most about Stichting-FAN?
rideATAXIA Europe in the Netherlands! I really enjoy organizing, and to be able to use this interest for a good cause that can also help me is the ultimate happiness. Moreover, I enjoy the event, it combines my biggest hobbies: cycling and meeting friends.
Does FA impact this? Please share any adaptations you’ve made to be able to participate in Stichting-FAN.
A lot of arranging, talking, writing and calling has to be done to arrange for Stichting-FAN and rideATAXIA. Fortunately, all those involved are familiar with FA, therefore a lot of understanding exists if a task takes a little longer and tasks being too difficult in practice are taken over. I think the great amount of understanding and help for FA is fantastic. My wonderful friends and family help, but also friends and acquaintances of friends and family, other (family or friends of) people with FA, participants in the events and sponsor.
A successful rideATAXIA Europe took place in the Netherlands in 2021 and 2023, hopefully again in 2025! An FA expertise center was established in a hospital in the Netherlands in 2023, and we hope to be able to contribute to this. Last winter, we organized a day together with the muscle association and the hospital to inform as many people with FA as possible about this center.
Interview by
Jakob Mitterhauser