My Psychology Today Profile: https://www.psychologytoday.com/profile/931535
My autobiography: https://www.amazon.com/Dandelion-Diary-Tricky-Art-Walking/dp/0798146311
Who do you live with? My husband, Curtis Elliott
What's a typical day for you? I wake up at 9. My carer/assistant arrives at 9:30. She helps me to thoroughly stretch my legs, feet and toes, while massaging arnica into them; Then I have breakfast and do admin work for my practice; next, I have a bath; then I do cycling for an hour on an active/passive stationary cycle. I remain in my wheelchair, strapping my legs in. In the afternoons I run my Wellness Counselling Practice; Then I spend time outside, standing in my wheelchair while stretching my back and doing deep breathing. I might go for a walk with my mom and spend time with her; I now plan and prepare supper with my husband; do online shopping, watch news, a Netflix movie or read.
How long have you known you are living with FA? When and how were you diagnosed? Almost 30 years; I was diagnosed at 16 by a neurologist.
Describe your transition from walking to walker/wheelchair: I didn't have enough time to continue walking with the walker, because I had to get from A to B more quickly in order to get on with my studies.
What do you like to do to stay active and what type of exercises work for you to stay strong? I thoroughly stretch my legs, feet and toes, massaging them with arnica; I do cycling for an hour on an active/passive stationary cycle. (I remain in my wheelchair, strapping my legs in); Then I spend time outside, standing in my wheelchair, stretching my back and doing deep breathing; I enjoy swimming with a floatation jacket, especially in the ocean.
Do you have any hobbies or special interests? Water colour painting of nature imagery, gardening, writing poetry and planning novels to write!!
What is a good trick to make daily life easier? Laughter and karaoke singing, moving your body to release feel-good hormones; having a bed that you can raise electronically; having a stand-up wheelchair.
When FA gets you down, what do you think/do to feel better? Being thankful for 3 small things (even the soft pillow that you sleep on); it's also helpful to be thankful for disillusionment, frailty and silence (as Alanis Morissette sings in her song INDIA); looking for a moment of awe every day (eg. the twilight or a refreshing chat), making small choices every day to feel more empowered. Engaging all five senses in the garden/nature while standing in my wheelchair. In this way I ground myself; Praying for the power and grace of God and the energy of the holy spirit; Deep breathing to stop over-analysing and lift my mood.
What is one way living with FA has POSITIVELY affected your life? It has forced me to shift gears from "doing" to "being" and to delve more deeply into my soul. Hence I chose to be a WELLNESS COUNSELLOR. So, it has also birthed in me a very strong purpose to find the poetry in my pain and using this to alleviate the suffering of others.
What is a favorite motivational quote of yours? "When life gives you a cactus, don't sit on it..." (don't obsess, use your mind to solve problems in creative ways). "when the going gets tough, the tough gets going (don't give up too easily, but encourage yourself to keep going and to find alternative solutions to what seems impossible.)
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Thoughts give rise to emotions. Therefore, one should challenge negative or distorted thinking so as to grow healthy tree-like protein thought-structures in the brain as opposed to negative thinking which leads to the growth of wiry and unhealthy "tree" structures in the brain, prolonged inflammation, glucose imbalance, the formation of a-symmetrical water crystals in the body and the inhibition of the production of key brain chemicals. In short, a healthy mind leads to a healthy body. Don't make your life even more difficult by engaging in unhelpful or negative thinking. Also, accept that people have different points of view and always negotiate compromises, especially with your carer/assistant.
What is the first thing you want to do when a cure/treatment to FA is found? Hike the Camino, visit Barcelona, improve my singing and speech, do volunteer trauma counseling in war zones, snorkel in the Maldives…
"I have FA but FA doesn't have me." What does this statement mean to you? You can't always choose the events and circumstances of your life, but you can choose the way you react to them, eg. how you react to FA; or you can choose to be your own best friend and to be the boss of your own mind, despite FA.
Interviewed by
Please note that this post represents an individual’s experience and is not medical advice. Please consult with your doctor about the safest and best way to manage your FA diagnosis.
FARA Ambassador Program
Name: Marguerite Black
Name: Silvia
Do you have any hobbies or special interests? I like reading.
Name: Katie Snead
What do you like to do to stay active and what type of exercises work for you to stay strong? I like to use a standing frame, push my manual wheelchair around my college campus, and transfer independently as much as possible. These three things combined together daily help me keep my body moving and help me to maintain my strength.
