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On August 19 from 6 to 8 p.m. at Fort Orange Brewing in Albany, The College of Saint Rose and Stroke Onward, an organization dedicated to ensuring stroke survivors and their supporters have needed resources, will gather stroke survivors to share their empowering stories.

Expected to join the event is Debra Meyerson, a Stanford professor and author and now stroke survivor with aphasia and hemiparesis. She and her husband have been cycling a tandem bike across the country since May as part of Stroke Onward’s Stroke Across America.

A group of stroke survivors with aphasia in the Pauline K. Winkler Speech-Language-Hearing Clinic at Saint Rose has been reading Meyerson’s book “Identity Theft: Rediscovering Ourselves after Stroke” throughout this year. The on-campus clinic at Saint Rose, which is part of the Communication Sciences and Disorders Department, serves, among others, those in the community who have experienced strokes and other traumatic brain injuries, helping them to regain communication skills.

The spouse of one of the clinic’s clients, a neurologist at Albany Medical Center, and Julie Hart, director of Medicaid waiver services at The College of Saint Rose, will speak at the event, which is free and open to stroke survivors and their supporters. Online registration is required for the event.

According to the Centers for Disease Control (CDC), someone in the United States has a stroke every 40 seconds, and every 3.5 minutes, someone dies from a stroke. The CDC reports stroke is the leading cause of serious long-term disability.

We recently caught up with Hart to discuss the importance of this event.

What kinds of things have you learned about people with TBI and stroke working with them in our clinic?

One of the primary things I have learned from my 33 years of working with people with communication disorders following TBI or stroke is just how much courage and strength these individuals have. They are constantly challenged by those in the community (sometimes in their own families), who do not believe they can understand or communicate anything. They are so often marginalized or ignored, often leading to depression, isolation, and loneliness. Imagine understanding something and having thoughts about it but being unable to share those thoughts the way you once did so easily.

What advice can you give to someone suffering from a TBI or stroke or supporting a loved one with TBI or stroke?

I have several pieces of advice I would, and typically do, offer:

● Resume living your life with aphasia as soon as possible. Natural, meaningful, situations contribute to improved communication, better recovery, and a stronger sense of self.

● Please know that you will improve. We know so much about the brain’s ability to heal and recover over the course of time with purposeful, intentional practice, therapy, and interaction. Don’t let anyone tell you that you will not improve.

● Do not, I repeat, DO NOT listen to the incorrect and often damaging information from uninformed people, (doctors included), who tell you that where you or your loved one are at a year post injury is where you will be forever, that progress beyond that is not possible. I have seen countless times how limiting that statement can be for people who buy into that. I have seen people make meaningful recovery 25 years post stroke, and that is not an exaggeration.

● Being optimistic and hopeful is not a bad idea. It doesn’t mean that this is not hard – it is the hardest job you will ever have – but it means that growth, improvement, and recovery are not only possible, but they are probable.

How can we encourage/help those who have suffered from a stroke?

One of the most important things we can do is to acknowledge the human being that they are. Make eye contact with that person, interact with them. Let them know when you don’t understand what they are trying to say. Let them know that you know they know what they are trying to say. Don’t pretend to understand them – that is the ultimate form of disrespect. Give them time. Learn supportive communication strategies. This will allow them to reveal their competence and for you to recognize that strength. Use multiple modalities when interacting. What I mean by that is speak, write, give choices, draw, encourage them to draw, use gestures, show pictures, and use the internet to your and their advantage.

What is your motivation for advocating for individuals who have suffered from a TBI or stroke?

I love people, and if I can help someone live a more meaningful life, I will do that.

Do you know of any other events such as this one for individuals who suffered from a TBI/aphasia?

Stroke Onward is an organization formed by Debra Meyerson and her husband Steve after Debra suffered a massive stroke with right hemiparesis and aphasia. The organization and its website advocate, inspire, and educate people all over the world living with aphasia and those who are wanting to learn more about it. They are currently completing Stroke Across America on a tandem bicycle to raise awareness for stroke and resulting aphasia. Debra was a Stanford professor and avid cyclist prior to her stroke. Regaining meaningful aspects of her life has been important to her rediscovering her sense of self.

Why is this kind of event important to both those with TBI or stroke and to the wider community?

Education, advocacy, compassion, and equity. I am not sure where to start. Communication is often at the core of who a person is. Aphasia takes that away. When we educate people about aphasia, we empower relationships. Helping someone to learn how to facilitate someone’s ability to communicate, we are changing the pattern of ignoring, marginalizing, and building a sense of community, awe, and respect.