Hope can be found in the most unexpected places. When you are lucky enough to find one, pick it up, hold it, and let it fill your life.
One of the highlights of attending the 6th World Parkinson’s 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 around the world. It also showcases the many submitted videos competing for top honors, including the grand prize.
While each video tells a different story, they collectively demonstrate the unwavering spirit of hope that exists in the Parkinson’s community. As the saying goes, “Once you meet one person with Parkinson’s, you meet one person with Parkinson’s.” While we all differ in our symptoms and disease progression, we make a community that is strong, passionate, full of hope and strength of nature in our determination to live our best lives, a sentiment that is contagious.
A press release about the congress noted that the delegates represented more than 900 physicians and medical researchers; 450 registered nurses, therapists and other doctors; 685 people living with Parkinson’s; and 260 care partners and family members come together to teach and learn all you can about Parkinson’s.
A roundtable on Parkinson’s coagulation
We attended lectures, workshops and roundtable discussions, the latter being small groups of less than 12 participants. Developing a plan to get session tickets each day becomes part of the process. However, queuing early is not allowed, and the event staff is very strict about it. So most people hang around until the line opens.
This isn’t a problem for most of us, but it is a problem for someone with Parkinson’s who has a freeze — a sudden, involuntary inability to move — that occurs in several people in the group who are waiting to get tickets to the round table on symptoms. . However, when the line opened, people were nice. We walked together, and we all got tickets.
Our presenter, physical therapist Elisa Pelosin, PhD, of the University of Genoa, Italy, began by discussing three types of clots, which often occur during a patient’s “rest” period — when dopamine-boosting drugs are not being taken or not used. t is fully effective — but can also occur during an “active” period:
- Freezing of motor function is the most common form, which feels like the patient’s feet are stuck to the floor. It can also be present on other areas of the body, such as the arms or legs.
- Cognitive freeze involves losing your train of thought (also called speech freeze).
- Emotional freeze is not unique to Parkinson’s disease, and often causes anxiety that can lead to gait freeze.
Pelosin focuses on retraining the brain using action observation treatments, arguing that “observation of an action performed by another person activates the same neural structures responsible for the actual execution of the same action in the recipient,” according to a description in the journal Philosophical transactions of the Royal Society. It may seem like a simple concept for complex symptoms, but it works.
Tips, tricks and glimmers of hope
We exchange helpful tips for sensory cue methods, which include using both visual and auditory (often rhythmic) cues. Items that can help with this include laser pointers, special walkers, music, metronomes, and even vibrating shoes.
Near the end of the session, a young volunteer approached, and Pelosin welcomed him to share the method he uses with his patients, which is called the “4S rule”: Stop, exhale, 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.
In the end, the takeaway of the day was so much more than winning videos and tips on freezing. That’s hope. As Pulmonary Hypertension News columnist Jen Cueva notes in one of her columns, we patients and caregivers offer hope and connection as we share our stories.
That vision of hope is evident as I watch videos and share stories around the table. But an unexpected glimmer of hope came from young physical therapist Hector Mallar, who had the audacity to approach our table, and from Pelosin, the distinguished researcher who encouraged him.
We have forged relationships with the health and research community. Working together, we will not rest until there is a cure for Parkinson’s disease.
Note: Parkinson’s News Today is a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to act as a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your doctor or other qualified healthcare provider with any questions you may have regarding a medical condition. Never ignore professional medical advice or delay seeking it because of something you have read on this website. The views expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion of issues related to Parkinson’s disease.
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