Connecting with Others Who Understand

Day 10

After my stroke, one of the most challenging aspects wasn't just learning to communicate again—it was finding people who truly understood what I was going through. While family and friends were supportive, they couldn't fully grasp the daily struggles of living with aphasia, apraxia, and dysarthria. That's when I sought out others who shared similar experiences.

My Journey to Connection

My first experience connecting with others was through Boston University's Aphasia Center. The small group settings were ideal for me. I felt safe, understood, and encouraged to communicate in various ways. These sessions were a turning point, helping me regain confidence and realize I wasn't alone.

Later, I explored larger groups at Aphasia Recovery Connections (ARC), such as book clubs and support groups. While these were valuable, I found that larger groups could be overwhelming. My fatigue and speech difficulties made it harder to participate.

Through this experience, I realized that small, intentional groups work best. That insight led me to start my own groups, keeping them under 12 participants, which allowed for meaningful interaction, patience, and connection.

Finding Groups Can Be Hard

Both in-person and online groups can be surprisingly difficult to find. Not every city or town has an active aphasia group, and online options may be inconsistent or hard to navigate.

Here’s what helped me:

• Speech therapists: Many know about local groups, workshops, and social programs tailored for PWA.

• Aphasia centers: Centers such as Boston University’s or other regional centers often offer both structured and informal sessions.

• Other PWA: Fellow stroke survivors and aphasia community members are invaluable for sharing tips on where to find safe and supportive groups.

It takes persistence, but even one connection can make a huge difference.

Online Communities for People with Aphasia

If getting out is challenging, several online communities provide support and connection:

• Aphasia Recovery Connection (ARC): Daily online groups, information sessions, and community events. (aphasiarecoveryconnection.org)

• Just A.S.K. (Aphasia, Stroke, Knowledge): Virtual and in person (RI) meetups and resources. (justaskri.com)

• National Aphasia Synergy. Peer Befriending program and resource sharing. https://nationalaphasiasynergy.org/

  
  

• Facebook Groups:

  • Stroke Buddies: By and For Stroke Survivors (they have special focus groups - one for People with Aphasia)

  • Aphasia Gatherings

  • Aphasia, Apraxia, and Dysarthria Support Group - this is the group I started. Only people with these disorders can join this private group

  • Aphasia Communication Group

  • Aphasia Recovery Connection – PWA, Care Partners & Friends

    
    

Tips for Building Connection

1. Start with small groups: Easier to participate and less overwhelming.

2. Use online options: Virtual groups allow connection from home.

3. Create your own group if needed: Keep it small and focused for meaningful interaction.

4. Ask for help: Speech therapists, local aphasia centers, and other PWA are great resources for finding groups.

5. Be patient: Connection takes time. Listening, smiling, and participating in small ways all count.

   
   

Why It Matters

Connecting with others who understand your journey restores something aphasia can take away: a sense of belonging. These communities reduce isolation, provide strategies for communication, and offer encouragement when progress feels slow.

Daily Reflection

Who in your community could help you find a group—online or in-person? Consider reaching out to your speech therapist, local aphasia center, or another PWA. Even a single meaningful connection can make a world of difference.

💬 Today’s Takeaway Tip

Connection heals what isolation cannot.Keep looking, ask for help, and create spaces where everyone can be seen, heard, and supported

#blogboost #aphasia #apraxia #dysarthria #connection #communication

NOTE: I used ChatGPT to help with organization and to make it cohesive. Aphasia can affect speaking, reading and writing. Tools, like chatGPT, can help.