Name: Elvis Trompf
Age: 30
Where do you call home?: Sydney, New South Wales, Australia
What is your education? What is a current goal you have with your education?: I have a Bachelor in Life Sciences (Anatomy and Physiology) and a Graduate Certificate in Neuroscience. I initially worked in clinical trials out of university, which was my passion, but I have recently changed industries to Disability Services. Maybe one day I’ll return in some form, but I love what I do now.
Who do you live with?: My partner
What’s a typical day for you?: A typical day usually goes;
7am: Alarm, exercise at home, have my morning shake and get ready for work
9am-3pm: Work, which can vary each day. I work for Hello! Mr. Thomson, an independent support coordination/worker business. My experience in Clinical Trials really helps with our database of clients.
3pm: Housework, prepare dinner, life admin, maybe some hand rehab or speech exercises
5pm: Partner finishes work, relax until bedtime
10pm: Prepare for bed, make a jug of tea for the next day, sleep
How long have you known you are living with FA? When and how were you diagnosed?: I was diagnosed in 2019, so approaching 5 years.
Are there any others with FA in your family?: My second cousin
Describe your transition from walking to walker/wheelchair.: I have transitioned from unassisted to a mobility cane, but I mainly use it for uneven terrain and identification. I am still learning how to properly use it (2 years).
What do you like to do to stay active and what type of exercises work for you to stay strong?: Strength and mobility training 6-7 days per week (I used to be a personal trainer). Mostly body weight/calisthenics, but I do have a gym membership. I am slowly adding more low intensity cardio through animal movements.
Do you have any hobbies or special interests?: I love music, so I DJ and am learning to produce music. I still go to gigs and don’t let my FA stop me. I also take care of our garden.
What is a good trick to make daily life easier?: Get comfortable being uncomfortable. Easiest thing to do is set an alarm at the same time each morning and stick to it.
When FA gets you down, what do you think/do to feel better?: Music. When I feel low I just listen to some DnB or UK garage I think about going out and dancing.
What is one way living with FA has POSITIVELY affected your life? It has made me slow down and notice my surroundings more. Probably why I love my job.
What is a favorite motivational quote of yours? You don’t know what you don’t know – Donald Rumsfeld
What is a piece of advice that someone with FA has given you that encourages and inspires you?: Crazy as it sounds, no specific advice. Moreso I see people with FA push and succeed despite obstacles, and that motivates me.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Whatever you want to achieve, it will look so much cooler with your diagnosis.
What is the first thing you want to do when a cure/treatment to FA is found? Cry. I think about how my cousin isn’t alive for this and how happy he’d be.
“I have FA but FA doesn’t have me.” What does this statement mean to you? I think of FA as an afterthought.
How do you live your life in the face of adversity? Day by day. Ebb and flow
Are the healthcare providers in your town familiar with FA? I live in Sydney, one of the biggest cities in Australia, yet specialists don’t really know.
Is there support available from the healthcare system? Yes the NDIS is very helpful.
If I were traveling to your country to visit, what tips would you give me about your favorite attractions, activities, etc? Research. Gain an understanding of what you can see, what precautions you have to take, and if there are video recordings for what you can’t.
Do you know anyone else in your country with FA? If so, have you ever met them? Only a few, but they’re awesome.
Did your diagnosis impact your friendships and relationships? If so, in what way? Certain friendships ended or changed, and I don’t get invited to as many things anymore.
What do you wish the general public understood about FA or disabilities? Our brains work fine and to ask us before ‘helping’ us.
Has FA had an influence on your course of study or work? If so, in what way? Pro: Motivation | Con: Energy
Are there any modifications that have made it easier for you to pursue your education or work in your job? Pacing myself. What can be done in a solid 2 hour session can be done better over 3 hours with breaks.
What is your favorite part of your education or work/career? I get to make people happy and be a nerd.
How long have you had your hobby/special interest? How did it start? Why is it important to you? Electronic music. I love learning about its history and culture, and I’m a DJ and learning production. I would see people I know dj and thought it was amazing (like my sister). I love making something so enthralling people can’t help but dance.
What is your favorite movie or book? Princess Mononoke (movie) and The Biology of Desire by Marc Lewis.
If you could live anywhere in the world,where would it be and why? Bristol. It’s a melting pot of my favourite music.
Interview by
Jamie Plourde