Understanding the Reality of Movement Disorders: The Human Experience Behind Huntington’s Disease
For people living with movement disorders such as Huntington’s disease (HD), the journey to diagnosis and treatment is often shaped by uncertainty and stigma. During a recent webinar hosted by Teva, patients and caregivers shared personal experiences that highlighted the emotional and clinical realities of living with these conditions.
Their stories carry an important message for healthcare professionals, industry leaders and caregivers: listening to lived experience is essential to improving awareness, diagnosis, long-term care and patient outcomes.
What is it Like to Receive a Movement Disorder Diagnosis?
For many patients, receiving a diagnosis can be frightening.
For Doug, who lives with HD, the diagnosis came with a particular emotional burden. Having watched his father deteriorate from the disease, he already understood what HD could mean for the future.
“Watching him go through the whole HD thing was tough. And around that time, a little before he passed away, I got tested and I ended up being positive and it turned out that I actually had it worse than my dad - that was kind of a groundbreaking moment for me.”
Doug initially struggled to accept his diagnosis, admitting that fear led him to avoid confronting the condition for years.
“I was running away from the fact I had Huntington’s for so long and I was running away from the reality of my dad’s situation, and it was not good, very counterproductive.”
His mother Denise, a neuroscience nurse and his caregiver, described the emotional complexity of witnessing both her husband and son navigate HD.
And so, I was watching him run from it. When it’s your child, it’s a whole different ball game. And it’s been tough having to watch him navigate this.
“When Doug was initially going through this, with his dad declining, it was such a long journey. I knew he was running. I knew he didn't want to face it. I knew he was in denial and I knew things that I could do for him at that moment, but I needed to honor where he was in his journey with realizing and admitting to himself that, yes, he needed to embrace this and seek help. And so, I was watching him run from it.”
She adds:
“When it’s your child, it’s a whole different ball game. And it’s been tough having to watch him navigate this.”
Today, Doug says he is coping much better with the reality of his condition.
“Yes, it was tough so but today? I feel good now and I've got everything, most of my stuff, under control.”
What is the Hidden Impact of HD Symptoms?
HD can affect a lot more than physical movement. Doug described how his symptoms influenced identity, relationships, confidence and mental wellbeing and also spoke about the cognitive effects of HD, particularly short-term memory challenges and behavioural changes he did not initially recognise in himself.
“I didn’t realize that I was being mean to people. I didn’t realize I was being rude. I thought I was just being myself.”
These experiences highlight the importance of recognising not only the physical manifestations of movement disorders, but also their psychological and social consequences.
How Important are Support Systems?
Throughout the discussion, the participants repeatedly emphasised the value of support networks — from family members and healthcare professionals to peer advocacy groups.
Doug described the huge impact of connecting with others living with HD through support groups, after meeting another HD patient through his brother-in-law.
“So we go to mental health groups at the hospital together – a whole Huntington’s scene where everybody in the room has Huntington’s – that was the first time I’d ever seen so many people with Huntington’s, and everyone understood each other- there was common understanding.”
Doug also spoke about the importance of self-care, revealing that the practice of journaling has been a key coping mechanism and has helped support his short-term memory.
“I can take notes. I can make a to-do list. I can check things off. Journaling is definitely a good thing and you learn a lot about yourself - you can be OK with your real self. Because in journaling, nobody else is there.”
Denise highlighted the importance of multidisciplinary care models, particularly for HD, where coordinated support across neurology, physical therapy, occupational therapy, nutrition and mental health services can significantly improve quality of life.
She also stressed the need for better caregiver support and education.
“Patients are often in denial and don’t know where to go or don’t know what they’re supposed to do”
In addition, she reminded patients of the importance of support groups, such as those provided by The Huntington's Disease Society of America (HDSA).
“Attend them and reach out to people. You learn so much more from others - through their lived experiences, you get such great tips, and things that worked for them may work for you too.”
How Can We Challenge Misconceptions and Stigma about Movement Disorders?
A recurring theme throughout the webinar was the misconceptions and stigma associated with movement disorders.
Doug described situations where others assumed he was intoxicated because of slurred speech or involuntary movements.
“People would think I was drunk when I wasn’t,” he says.
For healthcare professionals, these accounts serve as an important reminder of the need for greater awareness and earlier recognition of movement disorder symptoms across clinical settings.
They reinforce the importance of individualized treatment planning and open communication between patients and healthcare teams. Communication in general - being open to talking about the condition - is crucial, Denise believes.
“I think a lot of people are not forthcoming or don't want to talk about their symptoms or are in denial about it and maybe not even aware that they're exhibiting these symptoms. Regarding appearing intoxicated or altered, it would be so much easier if people would just go ahead and just say right away, I have Huntington's or whatever other condition. I think that people, once they're aware, come around and meet you halfway.”
How Important is Advocacy Through Lived Experience?
For Doug and Denise, sharing their stories publicly became part of their healing process and a way to help others avoid similar struggles.
Doug highlighted the importance of seeking help early.
I think as caregivers, we have to educate everyone out there, including healthcare professionals. Caregivers learn so much along the way, they end up being experts.
“Don’t run from it. Talk to your doctor. Get tested.”
Denise emphasised the role caregivers often play in educating healthcare providers, especially in rare or less commonly understood conditions such as HD.
“I think as caregivers, we have to educate everyone out there, including healthcare professionals. You find yourself teaching everyone a little bit about something they briefly learned in school. Caregivers learn so much along the way, they end up being experts.”
Can Attitude and Treatment Make a Difference to a Patient’s Quality of Life?
While the discussion acknowledged the challenges associated with movement disorders, it also focused strongly on hope and resilience, the importance of self-expression and the impact of treatment and support.
Doug spoke about the positive changes he experienced after committing to treatment, healthy routines and exercise.
“You can extend the quality of your life if you start working earlier with your doctor. Exercise is very good for Huntington’s – another good treatment to try.”
A Call for Greater Awareness
The webinar reinforced a broader message relevant across healthcare, advocacy and industry: awareness and education remain critical.
Despite advances in neuroscience and mental health care, HD remains under-recognized and frequently misunderstood. Patients and caregivers may spend years searching for answers, while healthcare professionals outside specialist centres may encounter limited exposure to these conditions during training.
For organizations committed to advancing care in neurological and mental health conditions, patient stories provide essential insight into the realities behind clinical pathways and treatment decisions.
As Denise observed:
“Awareness campaigns are great…just like this one today.”
Teva continues to promote awareness of Huntington's Disease (HD) through disease education campaigns, digital support platforms, and clinical initiatives aimed at improving diagnosis.
NPS-ALL-NP-01811 July 2026