Finding hope and tips for freezing at the 6th World Parkinson Congress

Hope can be found in unexpected places. When you’re lucky enough to find it, grab it, hold onto it, and allow it to fill your life.

One of the highlights of attending the 6th World Parkinson Congress, held in early July in Barcelona, Spain, was watching the opening ceremony with my husband, Mike. It featured choirs, dancers, musicians, and people with Parkinson’s disease from all over the world. It also showcased many submitted videos that competed for top honors, including a grand prize.

While each video told a different story, they collectively put faces to the unshakable spirit of hope that exists in the Parkinson’s community. As the saying goes, “Once you’ve met one person with Parkinson’s, you’ve met one person with Parkinson’s.” While we all differ in our symptoms and disease progression, we make a strong, vibrant, hopeful community and a force of nature in our determination to live our best life, a sentiment that’s contagious.

A press release about the congress noted that delegates representing more than 900 medical doctors and researchers; 450 registered nurses, therapists, and other clinicians; 685 people living with Parkinson’s; and 260 care partners and family members gathered to teach and learn all things Parkinson’s.

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A roundtable on Parkinson’s freezing

We attended lectures, workshops, and roundtable discussions, the latter of which were small groups of fewer than 12 participants. Developing a plan to obtain tickets for sessions every day became a part of the process. Lining up early wasn’t allowed, however, and the event staff was strict about it. So most people milled around until lines opened.

This isn’t problematic for most of us, but it is a problem for someone with Parkinson’s who experiences freezing — the sudden, involuntary inability to move — which happened to a few of the people in the group who were waiting to get tickets to the roundtable on the symptom. When the line opened, however, people were kind. We walked together, and we all got tickets.

Our presenter, physical therapist Elisa Pelosin, PhD, from the University of Genoa, Italy, began by discussing three types of freezing, which often occur during a patient’s “off” periods — when dopamine-enhancing medications either aren’t taken or aren’t fully effective — but can also happen during “on” periods:

• Motor function freezing is the most common form, which feels like a patient’s feet become stuck to the floor. It can also be present in other areas of the body, such as the arms or legs.
• Cognitive freezing involves losing a train of thought (also called speech freezing).
• Emotional freezing is not exclusive to Parkinson’s disease, and it often causes anxiety that can contribute to the freezing of gait.

Pelosin focused on retraining the brain by using action observation treatment, which posits that the “observation of actions performed by others activates in the perceiver the same neural structures responsible for the actual execution of those same actions,” according to a description in the journal Philosophical Transactions of the Royal Society. It may seem like a simple concept for a complex symptom, but it works.

Tips, tricks, and a ray of hope

We exchanged helpful tips for sensory cueing methods, which include using visual and auditory (often rhythmic) cues. Items that can help with this include laser pointers, specialized walkers, music, metronomes, and even vibrating shoes.

Near the end of the session, a young volunteer approached, and Pelosin welcomed him to share a method he uses with his patients, called the “4S rule”: Stop, sigh, shift, and step. It works as follows:

• Stop what you’re doing.
• Sigh and take a big breath.
• Shift your weight until you feel it.
• Step.
• Repeat.

Ultimately, the day’s takeaway was more than winning videos and tips on freezing. It was hope. As Pulmonary Hypertension News columnist Jen Cueva notes in one of her columns, we patients and caregivers offer hope and connection when we share our stories.

That vision of hope was evident as I watched the videos and shared stories around the table. But an unexpected ray of hope came from the young physical therapist Hector Mallar, who had the courage to approach our table, and from Pelosin, the leading researcher who encouraged him.

We have made a connection with the healthcare and research communities. Working together, we won’t stop until there is a cure for Parkinson’s disease.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.