An interview with Lindsay Dame on Dystonia Awareness, August 8, 2023 by George Ackerman, Ph.D, J.D.
My name is Lindsay and I have an undergrad degree in Child and Family Development, a Psychology minor, and a Master’s in Reading. I’ve worked in education all my life and begin my 19th year as a teacher this coming school year. I was diagnosed with dyslexia, ADHD, anxiety, and depression in third grade and migraine and scoliosis in 7th grade. I feel my experiences provide me with an empathic perspective that enables me to support my students and their families that face similar struggles. I’m quick to make modifications and accommodations so my students not only succeed academically, but are successful socially and emotionally, too. This will be my fourth year in third grade. Prior to that, I worked with three to six-year-olds.
I enjoy the outdoors, animals, photography (and taking nature photography), exercising (although that looks a lot different for me these days), spending time with my family (that includes my fur baby, Jasper), friends, and the past 4 years I’ve been a chronic illness advocate.
Please tell me a little about your background and what got you involved with awareness.
In addition to the diagnoses, I listed previously, I also had an undiagnosed form of Dystonia called Writer’s Cramp (or Focal Dystonia) growing up. I’ve always had a difficult time controlling my grip when I trying to perform fine motor skills. I attempted to avoid fine motor tasks as much as possible, and I still do as muscles in my right arm, right shoulder, right side of neck, and right upper back are activated (that shouldn’t be) and it becomes very painful and challenging to perform fine motor tasks.
In the fall of 2018, I had my first Dystonic Storm (Status Dystonicus). It looks similar to an epileptic seizure, but can last minutes, hours, days, or even weeks for some and one is usually conscious but is unable (or has difficulty) communicating due to the uncontrollable muscle contractions throughout their entire body. During my first storm, I was taken to the ER, medicated, deemed a drug addict, told I was having some sort of seizure (aka overdose/withdrawal), and to see a neurologist and therapist. I did not experience what I call any “residual side effects” from that initial Dystonic Storm, so I ignored all medical advice, as I was extremely hesitant to trust any medical professional as I had not been taken seriously and was considered a drug addict and a hysterical female.
Unfortunately, in January or February of 2019, I began experiencing intense internal tremors/vibrations throughout my body. I told multiple doctors and continued to be told I needed to see a therapist. As someone who struggles with stress and anxiety, I knew what I was experiencing was completely different than anxiety and stress. By September 2019, I began having multiple Dystonic Storms. The storms were so intense my muscles ripped and tore. It took weeks to recover just from one storm and then another one would make an appearance. I was extremely sick and lost 20+ lbs. I kept working because I had no choice, so people just assumed I was fine or faking.
After my second and worst storm, I never stopped moving. My migraine and undiagnosed myoclonic seizures increased in frequency and intensity, too. Before being discharged from one of my ER visits, the staff scheduled (without my consent) a neurologist appointment. I went to that appointment in October of 2019. My husband and I described my symptoms to the neurologist, and she nonchalantly told me I had Dystonia, but said she didn’t know why. When I asked her what Dystonia was, she rolled her eyes and very condescendingly told me, “The movements you and your husband just described to me.” She ordered an EEG (2 weeks out). I ended up back in the ER a few days later due to another Dystonic Storm. However, this time I was taken seriously since my medical file listed Dystonia. At that time, I was admitted into the neurological unit in the hospital and a 24-hour EEG was performed. My undiagnosed Myoclonic seizures were then diagnosed!
I then had to advocate to switch from the neurologist to a movement disorder specialist. The first movement disorder specialist I had unfortunately was unable to help. He then referred me to a movement disorder specialist at Duke. However, I was still misdiagnosed with functional Dystonia. My Dystonia genetic panel testing (at Duke) returned negative. My gut and my Dystonia mentor and friend, Beth Berry continued to tell me this was incorrect. Fortunately, my parents paid for me to see an integrative doctor and she found multiple SNPs that revealed I lacked dopamine and I’m genetically more likely to have Parkinson’s (thus far, my DATScan was negative for Parkinson’s). With the help of my integrative doctor (and Beth), I was able to get a trial of carbidopa-levodopa from my movement disorder specialist and it worked! Therefore, I have Dopa-Responsive Dystonia, not Functional Dystonia!
Growing up in the USA, I was led to believe that medical professionals are to help and to potentially heal you. I experienced none of this during one of the most traumatic times of my life and it was extremely eye opening for me and what those with “rare” chronic illnesses face daily. I know there are great medical professionals out there. Unfortunately, it took me advocating for the past 4 years to find them! Through these experiences, I realized how important it is to raise awareness not only about Dystonia, but invisible illnesses as a whole because we “don’t look sick.”
Can you tell me more about your advocacy?
The diagnosing neurologist didn’t provide my husband or me with any Dystonia resources! I left her office extremely upset and confused. I had to research Dystonia all by myself and ended up coming across the Dystonia Medical Research Foundation’s (DMRF) website. I then created a public Instagram account called @dystoniadame to find others like myself so I could learn, unlearn, receive support as well as give support. I also wanted to share my experiences in hopes that people who were going through similar journeys would feel less alone, make connections, and to raise awareness as I believe Dystonia is not as rare as people believe. It is often misdiagnosed, undiagnosed, or completely ignored.
I work with Dystonia Advocacy Network (DAN) by writing letters to policymakers to encourage the the DOD to continue to allocate money to fund Dystonia research yearly as well as to ensure those of us with dystonia continue to have access to treatment and any other issues that affect people with Dystonia that can be resolved through policy changes/ laws.
I complete questionnaires and encourage others to participate in questionnaires that the DMRF publishes. I also participate in DMRF’s Pet Palooza with my fur baby, Jasper, and I participate in the international fundraiser, Let’s Zoo This that’s held every September during Dystonia Awareness Month. The past 3 years, with my individual donations, Dystoniadame’s Pride’s team efforts, and all our generous donors we have raised probably close to $10,000 (or more) to help fund Dystonia research and to raise awareness. My young son has also been involved and raised $175 for Dystonia research through a lemonade stand. Additionally, I try to participate in Dystonia support groups and any educational webinars DMRF offers so I can learn more to help myself and others.
Throughout the year, I post content on my social media pages to help raise awareness and to support those in the chronic illness community (as I have also been diagnosed with Dysautonomia- POTS/IST and it’s suspected I also have hEDS). My page is a safe place for us to fellowship whether it’s through private texts, group texts, and or conversation threads on my posts, stories, reels or those that I have seen and shared. I also have spoken to numerous followers over the phone, and I’ve even met some face to face!
Another Dystonia warrior, Karl K., created a book called Warriors of Dystonia. The book is a cumulation of people’s stories with Dystonia from all over the world, and I was privileged enough that the beginning of my Dystonia journey is in this amazing book! All profit from book sales is donated to DMRF and Dystonia UK! I also interviewed with another Dystonia advocate, Nisshaa in India and she published my story on her The Unique You Instagram page.
I speak freely of my Dystonia to anyone who is willing to listen and throughout the school year, I wear my Dystonia awareness pin on my work lanyard. Additionally, my t-shirts are mostly Dystonia awareness shirts, and I wear them when I’m not working in addition to my medical ID bracelet and a Dystonia bracelet another friend with Dystonia, Renée C. made for me.
What is your passion and how did you get involved in dystonia awareness and hope for a cure?
My passion is to help others feel less alone by sharing my story, raising awareness by educating those in the medical field and those in the general population. I also have a strong desire to prevent others from suffering like I did by providing resources so they can advocate for themselves to receive a correct diagnosis and proper treatment. I’m a very social person and enjoy socializing. I tend to be an open book, so it seems very natural for me to be a chronic illness advocate. I will continue to learn how to best do this. I’m not perfect by any means, but hope my advocacy is helpful and beneficial to others. Additionally, since Dystonia can be a symptom of other illnesses such as Parkinson’s, Multiple Sclerosis, Wilson’s disease, Addison’s disease, etc. I believe finding a cure for Dystonia will also lead to potential cures for these diseases.
What type of goals do individuals with dystonia awareness have when working with you?
It depends on the person and the situation as to what goals individuals have when speaking with me. Some are caregivers and need resources and/or a listening ear as well as validation and encouragement. Those that suspect they might have a movement disorder usually contact me to learn more about Dystonia and what steps they need to take next. A lot of my social media followers have become very close friends/family and we frequently interact about our everyday lives and other times we might cry and vent about our pain, regression, fears, grief, etc. We also celebrate successes and each other! Having Dystonia and other chronic illnesses can be very isolating and lonely. Finding each other is necessary to not only survive but thrive!
What effect can your advocacy have on an individual with dystonia awareness?
99.9% of the people who have reached out to me for help have told me how grateful they are for my kindness, knowledge, support, and for being honest, and transparent. I had one follower contact me later and confided in me that she was about too unalive herself the day she came across my page and because of my Instagram page she felt less alone and decided to spare her own life. I never thought in my wildest dreams that I would make that big of an impact! If I can help just one person by letting them know they aren’t alone and are worthy, lovable, and deserve space on this earth, then I feel effective!
If you’re new to the chronic illness community, like I was 4 years ago, or are not part of the chronic illness community, it is my hope that my advocacy raises enough awareness that Dystonia will no longer be viewed as something rare and not solely as a psychological condition.
What would you like to see as a future goal for your advocacy?
I’ve shared my story with Brain and Life magazine and the editor informed me they would like to publish my story. I’m not sure when this will happen, but it sounds very promising! I’m excited as this magazine is an official publication of the American Academy of Neurology
Currently, I’m working on getting Dystonia Awareness Month recognized locally, and I have contacted my Mayor and the Governor of my state. I also plan to reach out to the newspaper and news stations with hopes that they will do a story on Dystonia within the coming year.
Before COVID, a group of volunteers with DAN spoke before Congress yearly. That is one of my goals, too. I also hope to contact multiple medical schools and encourage them to discuss dystonia and other movement disorders with all their students and residents. Additionally, I would also like to be a mystery patient for medical students.
Hopefully, one day a documentary about Dystonia can also be made!
I also plan to donate my brain to the Harvard Brain Tissue Resources Center to assist with research once I pass.
What events do you participate in?
Let’s Zoo This
How does this also assist the caregivers?
Caregivers often reach out to me for support whether for resources, for me to share my experience, and numerous times they just need a safe place for them to express their mixed emotions and ask questions (as some people with Dystonia don’t have the ability to speak) and their caregivers ask me what their loved one may be experiencing and feeling whether it’s emotionally, physically, psychologically, etc.
How can someone get in touch? What is your website?
I have two public social media accounts.
Instagram – @dystoniadame
Facebook – @dystoniadame
I can also be reached at email@example.com
If you had one final statement or quote you could leave for the dystonia community, what would it be?
You are worthy, valued, loved, and deserve to take up space in this world. Keep fighting and rest when needed! You’re NOT alone!