Living With Dystonia

Resources for Living with Dystonia

Tools and Information for Living Well with Dystonia
Tools for Your visit to the Movement Disorder Specialist
Province Specific Resources
Chronic Pain and Pain Management 
Your Physical And Emotional Wellbeing

Refer to the page on non-motor dystonia symptoms for more resources

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March of Dimes supports and services for people with disabilities

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Travelling with Dystonia: A Guide to Navigating the Journey with Confidence

Travelling can be an enriching experience that allows us to explore new places, connect with different cultures, reunite with family and friends, and create lasting memories. However, for individuals with dystonia—travelling can present unique challenges. With proper planning, support, and strategies, it is possible to have a fulfilling travel experience while managing dystonia.


Accommodations

When travelling through the airport, it’s important for individuals with mobility issues to request accommodations to ensure a smooth and stress-free experience. Depending on the airline, most major carriers want passengers to request wheelchair accommodations at least 48 hours in advance. Check the website of the airline you will be traveling on to find out how to request wheelchair assistance. Upon arrival, passengers should inform the airline or airport staff about their specific needs, such as assistance with wheelchair transport, special seating arrangements, or priority boarding. Most airports offer services such as dedicated accessibility desks, personalized assistance, and accessible restrooms to support travelers with mobility challenges. Also of note, there is a program called Hidden Disabilities (https://hdsunflower.com/ca/) that began in Europe but includes an increasing number of US and Canadian airports. According to their website, “The Hidden Disabilities Sunflower is a simple tool for you to voluntarily share that you have a disability or condition that may not be immediately apparent—and that you may need a helping hand, understanding, or more time in shops, at work, on transport, or in public spaces.” 
Travelers can request a free sunflower lanyard that identifies them as someone with a hidden disability who may require additional assistance or accommodation. Currently, not all airports participate in the program and some employees may not recognize the significance of the sunflower, but wearing the lanyard is an additional option for persons with dystonia who are planning on airport travel.


Assistance at the Airport

When a passenger with a disability requests assistance from an airline to move through the airport, the airline is required to provide assistance. Airlines are required to help passengers with disabilities throughout various stages of their airport journey. This includes helping you from the terminal entrance or vehicle drop-off point to your departure gate, assistance through the security checkpoint and onto the aircraft to your seat. Once at your destination, airlines must also aid in moving you from your aircraft seat to the gate for a connecting flight, if necessary, and from the connecting gate to your new plane. Additionally, they must assist you from your arriving aircraft seat to the baggage claim area, terminal entrance, or vehicle pick-up location. If travelling with mobility devices, medications, or an implant like a deep brain stimulation (DBS) device, additional preparation is necessary.

Daria Dragicevic, a PhD student in the Speech, Language & Hearing Sciences program at the STEPP Lab for Sensorimotor Rehabilitation Engineering at Boston University, shares a few tips for navigating the airport and security checkpoints.

1. Always arrive early at the airport.
If you have a DBS device, you may not be able to go through regular screening, depending on the manufacturer and year of implant. Notify airport personnel right away, explaining that you have an internal medical device and need to be pat-down. Sometimes this process is smooth, but other times it can be challenging to get their attention or explain your needs. Give yourself plenty of extra time for any scenario.

2. Pack all essential items in your carry-on, such as medications and DBS charging equipment.
If these don’t fit, you’re allowed to bring an additional bag specifically for medical supplies or medical equipment at no extra cost.

3. If you use a mobility device, know your rights, and clearly communicate your needs.
Contact the airline ahead of time if you’re bringing a personal mobility aid or need assistance getting to and from the plane. Before storing your wheelchair, remove any parts that could fall off, like footrests, headrests, or cushions. You can also request a seat for you and your caregiver in the bulkhead of the plane (the physical partition that divides a plane into different classes or sections) or near the restroom if mobility makes it difficult to navigate inside the plane.

4. Communication is crucial.
Whether you’re at the airport or on a train, clearly express your needs. People often assume everyone is able-bodied, so don’t hesitate to request assistance or specific accessibility features to ensure a smooth travel experience.

 

Service Animals

Service dogs are incredibly valuable, offering support and comfort to individuals with neurological conditions. When travelling with a service dog, everyday tasks can become significantly easier. Knowing what to expect when traveling with your four-legged companion can help ease travel worries. According to the Canadian Transportation Agency website, travelers with service animals should be prepared to do the following:

  • Inform a security officer about your service animal. It is also a good idea to provide advance notice to your carrier that you’re travelling with a service dog.
  • Provide proof of training to verify your dog as a trained service animal.
  • You and your service animal will be screened at the same time. You may consider using items (harness, vest, or leash) on your service animals that have little or no metal so as not to trigger walk through metal detectors.

At any point of the security process, you will not be separated from your service animal. If you need to relieve your service animal and exit the security checkpoint, you and the service animal will need to go through the screening process again. When you return, just request to move to the front of the line.
 

Travelling with Confidence

When travelling with dystonia, it’s essential to pace yourself, as managing the condition can be tiring. Incorporate rest days or breaks to relax and recharge between activities and listen to your body without feeling pressured to follow a strict schedule. Staying hydrated and
maintaining proper nutrition are crucial for muscle function and overall well-being, so carry water and snacks, especially if long waits between meals or specific foods affect your symptoms. Travelling isn’t just about the destination—it’s about the journey. Every journey, whether it’s through a crowded airport or down a scenic path, is a victory in embracing life beyond the limits of dystonia.

 

Adapted and reprinted with permission from DMRF Dystonia Dialogue, Winter 2024 Vol 47, No 3.

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Last update: Mar 2025