An interview with Linda Marie Furiate: Grateful to have Dystonia Guide my Path around the Sun to Help Serve Others
Biography
I am a US Air Force veteran who specializes in Intelligence and Communications. After leaving the military I embarked upon a career in Sales. This is where I found my calling and connection to psychology and service. After developing cervical dystonia, I have dedicated my passion to serve those with all forms emotional and physical challenges to include movement disorders, blindness and addictive behavior. I also work as an alternative counselor and mentor to offer my sight and insight to help those along their journey.
I am the former host and creator of Portraits in Determination, a local cable access TV program that showcased the strength of those who experienced life’s adversities and overcame their struggle through determination.
Can you tell me more about your Advocacy?
After I developed cervical dystonia in 1995 following a car accident I attended a local support group. Shortly thereafter I joined the Board as the Vice President and Newsletter editor. The meetings were held quarterly at NIH right outside of Washington DC. Over the years I have written countless articles and have been a guest speaker at events to share my story about living with dystonia. I have appeared in numerous publications, radio shows, and did a live morning TV interview in Washington DC while also promoting my book. In 2008, I was one of the winners for the ‘Botox Dreams’ campaign hosted by Allergan Pharmaceuticals. I won a $10k grant to be donated to my favorite charity. I chose the Bethesda Naval Hospital, now merged with the Walter Reed Medical Center across the road from NIH.
What is your passion and how did you get involved in Dystonia awareness and hope for a cure?
My passion is to help those in need. I like to share what I have learned along the way, and what has been helpful in treating my cervical dystonia. The idea of finding a cure for dystonia is beyond my realm of thinking. I will leave that up to the gods. For me, my energy is geared toward care and comfort with the desire to live here and now, in a body touched by dystonia. This is what led me to develop my STEP program, a comprehensive exercise protocol to help ease the muscle spasms and pulling associated with cervical dystonia, also known as Spasmodic Torticollis.
What type of goals do individuals with Dystonia have when seeing your Advocacy?
My goal is to offer my insight and success with what has helped me manage my dystonia over the years when nothing else seems to work. My intention is to help others realize that any sense of recovery from dystonia stems from personal effort, and not solely from the medical community. I feel honored to be an aspect of motivation in their quest to heal.
What type of training and how long are the programs?
My STEP program is a self-paced program that should be practiced once or twice a day depending on the exercise. STEP is a simple program, designed to practice daily, forever. Beyond the exercises, the philosophy of the program may be practiced 24/7. To date, I have offered my STEP booklet for free to hundreds and hundreds of people around the world.
What effect can your Advocacy have on an individual with Dystonia?
I feel that my advocacy and insight may have a profound impact on a person with dystonia if they are willing to do the bodily and emotional work necessary to aid in recovery. Although a person may not be able to 100% eliminate dystonia, there is always the possibility of much improvement if one is willing to put in the effort.
What would you like to see as a future goal for your Advocacy?
The future goal of my advocacy work is to encourage those who live with cervical dystonia to know that there is hope. The key is to address the needs of the twisting body, daily, so that when ‘tomorrow’ arrive, we are closer to being symptom free, as much as possible. I am in the initial stage of creating a video series and training for my STEP program to help even more people with cervical dystonia.
What events do you participate in?
Over the years I have been involved with various dystonia non-profits as a board member or participant. I organized a dystonia golf tournament, lobbied in Washington DC and spoke casually to local legislators. Since 2024, I have participated in the Angel’s Walk in New Jersey, as a speaker and dystonia advocate. In March 2023, I started a monthly online support group for people with cervical dystonia. The intention of my encouragement group is to focus on the emotional and spiritual aspects of having to live with dystonia.
How does this also assist the caregivers?
On occasion a caregiver will attend my monthly support group. The open heart-felt discussions allow the caregiver to understand how dystonia may affect the mind, body and emotional self. This allows the caregiver to gain more insight into dystonia and may offer a sense of how much of a challenge it is for the patient.
How can someone get in touch? What is your website?
My website is www.LindaFuriate.com My blog for dystonia is Cervical Dystonia | Creating A Positive Life
I may able be reached by email at LMFuriate@gmail.com
How can others also become advocates for awareness?
Anyone can be an advocate for dystonia. If a person has dystonia, I often encourage them to tell their story, even if it’s just to a friend or acquaintance. If the subject of dystonia is brought up, become a part of the dialog. Any bit of awareness is beneficial to inform the public.
How may someone help you if they are in your presence?
This is often answered by asking the other person to stand/sit on a certain side of them or asking the other person to slow down their own movements and energy so not to physically overwhelm or over stimulate the person with dystonia.
In your opinion, what is the key to effective advocacy?
A key component to effective advocacy is to create awareness. It is important to speak up and to share your story or share why your body is moving in a certain way. Advocacy does not just mean raising money, which some people are hesitant to engage in. I feel advocacy is to care about something so deeply that you are willing to offer that truth to others.
How can we better fundraise to support a cure for Dystonia?
I am of the belief that to find a cure for dystonia or anything for that matter may not always be related to how much money is raised. Life is observable. Possibly by understanding human behavior, over time, this may lead to a better understanding of how dystonia may become activated in the body. The cause itself may be the cure.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
Other activities that I undertake to improve my dystonia beyond my STEP program to focus on my breath through mindfulness, QiGong and Yoga. I walk three to five miles a day. I find that a body in motion needs to stay in motion to ease the motion. I have a healthy diet that includes lots of fruit and vegetables. Plus, I never miss a day without eating dark chocolate. The history of chocolate is rooted in medicinal remedies.
Why should people who don’t have Dystonia care about this?
Living a healthy lifestyle is important for everyone no matter what their situation may be. Dystonia can happen to anyone. It is important to be a step ahead of the game when dealing with any health setback.
Have you had any family members or relatives affected by Dystonia?
No
If you had one song that would tell us more about you or represent your life, which song would it be?
There are so many to choose from. I recently wrote song lyrics that reflect the way I feel about loss, which is something so many of us experience with dystonia. I am a big fan of Lauren Daigle’s contemporary Christian music and would love to hear her sing my words.
If you had one final statement or quote you could leave for the Dystonia community, what would it be?
Do what you need to do today no matter how hard it may be, with the hope of making tomorrow a little easier. Step into your life with grace and trust.
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