An interview with Allie Reed, Helping People with Parkinson’s Disease Find Community, Support, and Hope on April 3, 2024.
Biography
My name is Allie Reed and I’m a speech language pathologist. I grew up in Las Vegas, NV and received my Bachelor’s in Speech Pathology & Audiology from the University of Nevada, Reno. Following this, I moved to Chicago and attended Northwestern University for my Master’s in Speech, Language, and Learning. As a clinician, I have worked mostly in critical care and acute care, but also in the outpatient and inpatient rehab settings. Ever since I was an undergrad, my passion has been neurological speech, language, and swallowing disorders. I am fascinated by the brain and love working with people with Parkinson’s Disease, stroke survivors, patients with dementia, and more. Today, I oversee two programs that provide weekly conversation and support groups for people with Parkinson’s Disease and stroke survivors. All groups are virtual, free to attend, and provide connection, community, and hope to all members. I love what I do and feel so honored to be able to help people with communication disorders. Outside of work, I am an avid runner, enjoy traveling with my husband, and spending time with our two crazy cats.
Can you tell me more about your organization?
Lingraphica is an organization that helps people with speech and language impairments improve their communication, speech, and quality of life. We do this by providing communication devices, resources, and programs for people with various communication impairments, including Parkinson’s Disease, and their care partners, The program that I run is Parkinson’s Connect Live. This program provides weekly conversation and support groups for people living with Parkinson’s Disease and care partners. Our groups are on a variety of topics, including message banking, young onset PD, caregiver support, and more! All sessions are 100% free to attend and can be found on pdconnectlive.com
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is providing education and community for people with neurological communication disorders, including Parkinson’s Disease. I have been providing virtual support groups for people with neurological communication disorders for over 10 years, and I’ve seen firsthand how impactful these groups can be towards quality of life. These programs help to provide a network of community, education, and support. It is an honor to manage these programs and provide resources for people with neurological communication disorders.
What type of goals do individuals with Parkinson’s have when working with you?
Many times, people with PD and their care partners may not have been given adequate information about the changes to speech, voice, cognition, and swallowing that comes along with the disease process. I believe that communication is an essential human right and those diagnosed with the condition should be given education and resources to help them navigate their communication journeys. Not only does Lingraphica offer the Parkinson’s Connect Live program, but we also offer educational materials and message banking communication devices for people with PD. These resources can be invaluable in helping people with PD navigate the changes to their communication abilities.
What type of training and how long are the programs?
All groups on Parkinson’s Connect Live are one hour in length. Groups are conversation and support groups. No trainings are offered at this time.
What effect can it have on an individual with Parkinson’s?
Parkinson’s Connect Live can help members feel more connected, obtain education regarding PD communication changes, and build community.
What would you like to see as a future goal for your programs?
We would love to have our program grow! We currently offer free groups every Tuesday & Thursday and would love to welcome more members to our community.
What events do you participate in?
I participate in the annual awareness initiatives for various communication disorders, namely Parkinson’s Awareness Month in April, Better Speech & Hearing Month in May, and more.
How does this also assist the caregivers?
Parkinson’s Connect Live provides regular virtual support groups for care partners as well!
How can someone get in touch? What is your website?
Our website is pdconnectlive.com
I can be reached at areed@lingraphica.com
In your opinion what is the key to effective advocacy?
I think the key to effective advocacy is creating a community of people with lived experiences (those diagnosed with the disease and caregivers) to be able to advocate from their perspective. By empowering them to advocate from their own experiences, accurate messaging about the disease can be distributed.
Why should people who don’t have Parkinson’s care about this?
Parkinson’s is not an uncommon condition. Even if you do not have Parkinson’s Disease, you may encounter someone in your life who receives the diagnosis. Furthermore, communication is a human right. No matter if you have the condition or not, I believe advocating for someone’s ability to communicate their wants and needs to essential for all humankind.
Have you had any family members or relatives affected by Parkinson’s disease?
My grandfather had Lewy Body Dementia. We had never had anyone else in our family with PD or Parkinsonisms. It was a shocking diagnosis, and a rapid progression of the disease. At the time, there was very little awareness of Lewy Body and my mother and aunt had to navigate his disease progression largely alone. Reflecting on my experience, I saw how critical support groups are, both for patients and families, and now it is an honor and a privilege to be able to provide that support through Parkinson’s Connect Live.
If you had one song that would tell us more about you or represent your life, which song would it be?
I’m a huge fan of the The Killers because they are from my hometown, Las Vegas, NV. One of my favorite songs of theirs is Pressure Machine. To me, this song is all about overcoming challenges, holding on to hope, and shifting your focus to the positive things that you have in life. This song got me through a very hard time in my life and it always helps to give me perspective. Everyone has experienced challenging times, but holding on to hope can help to get you through and show you just how strong you are.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
“Just because a person can’t speak doesn’t mean they have nothing to say.” -Unknown
I believe that communication is a human right and that everyone should have a voice. Speech pathologists are here to help everyone communicate, no matter what their needs may be. I hope that through my work, I can help to provide communities where people with communication disorders can connect and feel less alone.