Making Headway - S3E13: Dystonia Support with Margaux Galli

Oct 21 2024 51 mins 2

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Intro

After brain injury, some of us are left with limbs and bodies that no longer function the way we are used to. Others have neurologic disorders that do something similar. One condition that does this is called dystonia. Dystonia is a movement disorder that causes muscles to spasm and contract resulting in abnormal postures, twisting, and repetitive movements. In this week’s episode, Margaux Galli, the leader of the NYC Dystonia Support Group provides education on dystonia sharing her lived experience with the condition. She offers resources for those suffering with the condition along with information on how to join the support group. Listen to learn more!

Summary

In this episode, Margaux Galli, a member of a dystonia advocacy group, shares her experience living with dystonia, a movement disorder. She discusses the symptoms and causes of dystonia, including involuntary movements, abnormal postures, and tremors. Margaux emphasizes the importance of finding a specialist who listens and understands the condition, as well as exploring different treatment options such as Botox injections and physical therapy. She also highlights the value of peer support and the role of peer-run organizations in providing patient-centered care. Margaux's advocacy work focuses on raising awareness and creating a community for individuals with dystonia. The conversation covers various topics related to dystonia, including the role of physiatrists in treatment, the experience of pain, the challenges of researching complementary therapies, the importance of self-advocacy and support networks, and the impact of dystonia on relationships and identity. The most common theme that arises is the feeling of isolation among individuals with dystonia. Margaux encourages people to join support groups and find healing communities where their voices can be heard.

Keywords

dystonia, movement disorder, involuntary movements, abnormal postures, tremors, specialist, treatment options, Botox injections, physical therapy, peer support, peer-run organizations, patient-centered care, advocacy, dystonia, physiatrists, treatment, pain, complementary therapies, self-advocacy, support networks, isolation

Takeaways

· Dystonia is a movement disorder characterized by involuntary movements, abnormal postures, and tremors.

· Finding a specialist who listens and understands the condition is crucial for effective treatment.

· Treatment options for dystonia include Botox injections and physical therapy.

· Peer support and peer-run organizations play a vital role in providing patient-centered care and creating a sense of community for individuals with dystonia. Physiatrists can help with joint issues and provide injections, but specialized neurospecialists may be needed for certain treatments.

· Dystonia can be a painful condition, and pain medication may not always be effective. Medications for mood can also help with involuntary movement.

· When researching complementary therapies, it's important to approach alternative treatments safely and consider the risk-benefit ratio.

· Self-advocacy and finding a supportive network are crucial for individuals with dystonia.

· Dystonia can lead to feelings of isolation, and joining support groups can provide a sense of community and understanding.

· It's important to communicate with healthcare providers and ask questions to ensure that your needs are being addressed.

· Managing dystonia often involves a combination of approaches, and what works for one person may not work for another.

· Supporting caregivers and educating them about dystonia can be challenging but important for the overall well-being of individuals with dystonia.

· The experience of dystonia can lead to shifts in identity and relationships, and it's important to find people who understand and support you.

· Finding a balance between self-advocacy and asking for help is key, and it's important to surround yourself with people who are willing to listen and support you.

Sound Bites

"Dystonia is a movement disorder."

"Stress can worsen the condition."

"Peer-run organizations provide patient-centered care."

"I think physiatrists might look at the whole body in a different way."

"No, pain medication that people think of isn't quite what's needed."

"I like to tackle how to approach alternative treatments safely."

Chapters

00:00 Introduction and Overview

02:00 Understanding Dystonia: Symptoms and Causes

08:47 Finding the Right Specialist for Dystonia Treatment

20:43 Treatment Options for Dystonia