UnderstandTogether: People with Aphasia

Our long-running Aphasia Threads series was the inspiration for this simple project bringing together people with aphasia, caregivers, and professionals around a question: Why are you a part of the aphasia community, and what do you get out of connecting with others through the NAA?

 

We shared posts throughout Aphasia Awareness Month weaving together all three viewpoints with a bonus contribution from board members. These thoughts below all come from people with aphasia.

Question: Why are you a part of the aphasia community, and what do you get out of connecting with others through the NAA?

• • Being connected with others that have the same problem is helpful. Learning how others manage the problem and hoping there will be a drug or treatment that helps the problem would be wonderful!—Cheryl

 

 

• • Being in NAA has been like a great big lovable nudge for me. I LOVE the fact that its members are from all over the US and other parts of the world. Being in Aphasia Cafe, the people with aphasia shared all sorts of tricks and tips like being patient with yourself when you are frustrated and self-doubting, always being sure to tell others that you have aphasia so that your shortcomings are explained, etc. Keeping all these in mind, I now have made new friends and maintain my older friends, somehow be able to converse with ‘normal’ people, involved in more voluntary opportunities, etc. Happy 35th-year NAA! May you be able to reach out to more people with aphasia! Cheers! —Azlynda

 

 

• • Being part of a vibrant community. To have a chance to talk. —Marshall

 

 

• • Connection with like-minded people, practice speech, and get tips. I have friends all around the world now. —Rodger

 

 

• • Education on my diagnosis. —Vashon

 

 

• • Feeling you are not alone in the world of aphasia. —Coralotwayluke

 

 

• • For community support and resources. Feel connected to others going through something similar. It is a good organization for me. —Laura

 

 

• • Helping—Mary

 

 

• • How to communicate better and learn more about how to do better, like reading. To learn how to communicate better. —Tony

 

 

• • I connect with NAA for updated research, helpful resources, and anything that can positively help me in my battle with aphasia. I believe that there are different spectrums and/or levels of aphasia, and I hope for more awareness of this. —Jessica

 

 

• • I connect with NAA, so I feel less alone. The people who are a part of NAA give me hope. —Kathy

 

 

• • I enjoy communicating with other people with aphasia through NAA-sponsored discussion groups, NAA Cafe, the NAA Book Club, and the NAA Ask the Expert series. I have developed friendships with other people participating in these NAA programs. We have developed our own ongoing community support groups. —Barbara

 

 

• • I feel comfortable relating to others with aphasia because I feel they understand and always help me understand my condition. —Trazana

 

 

• • I feel part of a community and gain useful information. It is so comforting to be with people who really get it. —Erica

 

 

• • I get a great deal that I can’t enumerate. But definitely, I gain a sense of community with true equals by being a part of NAA. I am able to share time and experiences with others who also struggle with PPA. —Joyce

 

 

• • I had a stroke. It helps to talk with people going through the same thing. —Frank

 

 

• • I have not had any connections with people experiencing aphasia. I would like to hear advice from them on how I can still go back to work. To understand how I can improve and still perform my work—Marie

 

 

• • I just wanted to find out more about aphasia, and I was my own advocate once I was a part of you guys. I felt like it was the best thing for me. —Brooke

 

 

• • I meet a lot of people with or without aphasia, people who help us. I learn a lot and practice our brain — whatever it may be. I feel at home talking to other people with aphasia, SLP, etc. I am not alone. No one judges. I meet other people. I learn a lot. —Kai

 

 

• • I read the articles and information provided about aphasia. They are most helpful to me because they let me know I’m not alone. —Robbyn

 

 

• • I read the story. They are inspirational. —Maryann

 

 

• • I value listening to and learning from other participants with aphasia. I also enjoy contributing my thoughts and ideas on the monthly topics. I enjoy listening and contributing to each session. Each time I meet new people and gain new insights. —Debbie

 

 

• • I want to be a part of a community with other people with aphasia. I want to build connections. —Carolyn
    I want to connect with people living with this disease. It helps me to get clarity and a better outlook on what my future may look like. —Pam

 

 

• • I want to learn everything about PPA. —Ann

 

 

• • I’ve been on my own until the last couple of months. I did my own research to find out what was happening to me and why. I did my own rehab, and although it turned out okay if I had a choice, I would rather have had some help. Now since I have lived for so long with aphasia, I can share some of my personal experiences and help others who are new to this condition. —Earline

 

 

• • Identifying with others and working together! —James

 

 

• • Information. —Ed

 

 

• • It helps me to improve my speech!—Peter

 

 

• • It helps that you are not alone. —Rob

 

 

• • It makes me feel part of a group and not just alone. —Bruce

 

 

• • My speech therapist. Comfort, knowing that I am not alone, and hearing how others deal with similar situations. —Crystal

 

 

• • Reaching out. Like practicing words and talking — to practice without being isolated. Research on the subject of verbal disability. Improve communication. —John

 

 

• • Same boat. Like-minded people. —Eric

 

 

• • The knowledge that I am not alone. —Jontybeever

 

 

• • The only people that I know who have aphasia are online in this community. I know now I’m not alone. —Staceylynn

 

 

• • They are happy to connect. —Maria

 

 

• • Understanding and comradeship. —Daniel

 

 

• • A small community and I feel alone. Tried to connect, but my aphasia makes email almost impossible. —Joey

 

 

• • Answers and research. —Michael

 

 

• • Answers that might help me figure out why I have aphasia. —M

 

 

• • Aphasia person wanting to learn more about aphasia. —Brian

 

 

• • Aphasia stroke. —Tamasa

 

 

• • Be a member of NAA and also enjoy any opportunity that you come across. —Quresha

 

 

• • Because I do. —Virginia

 

 

• • Because of COVID and on ZOOM. People with aphasia are different but equal. I was on the internet and searched NAA. —Kitti

 

 

• • Chat with your team and others with aphasia so we can determine what helps us deal with this disease. —James

 

 

• • Community. —Mike

 

 

• • Contact with other people with aphasia. Watching research trends. —Oren

 

 

• • Emails. —Rick

 

 

• • Enhance awareness and share personal experiences w/non-aphasia patients. —Mert

 

 

• • Facebook NAA. —Melissa

 

 

• • Happy. —Doug

 

 

• • Have aphasia. —Deborah

 

 

• • Hi. —Jill

 

 

• • Hope. —Erica

 

 

• • I am a Canadian living in the Greater Vancouver area. I joined your American aphasia organization because it appears to have far more useful and well-connected information on aphasia. I was diagnosed with anomic aphasia about 2 years ago, and it has been very impactful on my ability to find the right words on all levels. This has been quite a struggle, given that I am a university instructor, and the area of anomic aphasia looks to be something that is non very often examined. That said, I have very much appreciated the discussions and content you have sent out via emails, but I completely understand that my non-Americanness probably places me outside your focus. —Robin

 

 

• • I am a new first user. —Sue

 

 

• • I am a person with aphasia. —Maria

 

 

• • I am a person with what I believe to be aphasia, currently self-diagnosed; I, too, am a caregiver of my mother with circulatory dementia. I chose to connect with NAA looking for solutions and explanations to an ongoing undiagnosed problem I experience most days. I hope to find resources to help me to accept and live with this condition, although after researching, it is one of the least complications of aphasia known. I’ve lived with this my entire life. As I age, the complications increase as I manage to adapt and find new ways to communicate orally and written. Getting the words and thoughts down on paper at times takes hours for what seems like only two to three paragraphs. So far, I have struggled to become a part of the community, unsure of how to connect. I registered on the email list and received these emails informing me of upcoming events, which I hope will lead me to people who understand the complications of aphasia and/or in conjunction with other complications that I can feel welcome. I have no idea how to navigate the site, but I feel with the continued email of information, I will eventually find solutions to share my story. —Glen

 

 

• • I am hoping to find a support group near me for aphasia. —Scott

 

 

• • I didn’t know to understand. —Kim

 

 

• • I feel isolated and alone. —Joey

 

 

• • I have overcome many of my aphasia defects and would like to pass on the information and advice. —James

 

 

• • I just found out about the group. —Nan

 

 

• • I like to be part of this. —Kristin

 

 

• • I noticed that the community where I am from does not understand what aphasia is. Bruce Willis is someone who has aphasia, and I would like to go see him. I have been truly blessed with my wife and a speech language pathologist who has worked with me. Also enjoyed blackberries and mushrooms. It has been nearly three and half years since I have a stroke, but I am still here and have been remarkably well. I do not know yet. Aphasia and stroke are wanted. Bruce Willis has aphasia and will be cared for, unlike those of us in New Brunswick.—Joe

 

 

• • I related my experience of suffering from “global aphasia” and what I learn every day about my new life. —James

 

 

• • I want to improve my condition, be more aware of aphasia, and meet new people with aphasia. —Aracely

 

 

• • I want to know other people who have aphasia. —Judy

 

 

• • I want to learn more. —Sue

 

 

• • I would like to join NAA, if possible. —Benny

 

 

• • I’d like to see what/if I can contribute to folks. —Brian

 

 

• • I’m with the community, and I suffer from aphasia. —Wasim

 

 

• • In the middle of the trauma, I accept that it is important for me to change!—Joshua

 

 

• • It’s frustrating. —Daniel

 

 

• • Just starting with NAA. —Jennifer

 

 

• • NAA started 35 years to help connect people with aphasia, their family, and friends to the ever-growing aphasia community through their materials/website and networking through their widely dispersed affiliates around the country. —Tom

 

 

• • Network so I don’t feel alone in this struggle. —Lucy

 

 

• • Now, I had a stroke and aphasia. But, before, I was a critical care and flight paramedic in New York City, and I was going to go to medical school. But first, I had surgery, and in the surgery, I had a stroke and aphasia. Now, I speak with a speech pathologist, together, to speak about aphasia with EMS or police or firefighters or hospitals around the world, and I am also speaking with OT or PT or speech pathology students, too. —Avi

 

 

• • So far, I have found nothing of help!—Brian

 

 

• • Supportive. —Boyd

 

 

• • To communicate with all aphasia friends. —Michael

 

 

• • To learn about aphasia. —Kat

 

 

• • To learn more about aphasia and meet others with the same problems. —Bryonna

 

 

• • Vernon Hills, IL. —David

 

 

• • Yes. —Theresa