Building Your Support Team

Day 8.

One of my dreams since having a stroke has been that every survivor leaves the hospital or rehab facility with a team already in place—a true A-Team: coordinated, multi-disciplinary, and supportive from day one.

The Team Would Include:

• Neurologist → monitoring brain health and recovery.

• Physiatrist → a rehabilitation medicine doctor who sees the big picture.

• Speech Therapist (SLP) → someone experienced with aphasia, apraxia, and other communication challenges.

• Occupational Therapist (OT) → helping rebuild daily living skills.

• Physical Therapist (PT) → improving strength, balance, and movement.

• Behavioral Health Specialist → supporting the emotional side of recovery.

• Primary Care Provider → keeping all aspects of health connected.

• Peer & Support Group Connections → stroke groups, aphasia centers, caregiver support, and peer-to-peer befriending programs.

  
  

That’s the dream.But my reality looked very different.

How I Built My Own Team

It took time, persistence, and a lot of self-advocacy, but piece by piece, I built the A-Team that helped me move forward.

Speech Therapy

My journey began with a talented SLP from the visiting nurse team who came just days after I got home. She could only see me twice a week because of her workload, but she gave me back my voice — something I’ll always be grateful for.

When I transitioned to outpatient therapy, I was assigned a new SLP who didn’t seem to understand my needs. By luck, when she went on vacation, a substitute SLP stepped in — and she got it. She focused on helping me speak with my family and doctors and regain real-life communication skills.

When the original therapist returned, I had to advocate to continue with the substitute. With my husband’s help, I convinced the site manager — and it made all the difference.

Eventually, I moved on to a private SLP recommended by my neurologist. She introduced me to the Boston University Aphasia Center and a remarkable neuropsychologist, opening new doors for my recovery.

Physiatrist

I learned about physiatrists through my own research — doctors who specialize in rehabilitation medicine. I didn’t think there were any in Rhode Island, but after asking my second neurologist, I found one connected to the hospital’s outpatient rehab.That connection changed everything. The physiatrist guided my recovery as a whole person, not just a set of symptoms.

Neurologist

My neurologist experience was rocky. The first one assigned to me didn’t see me for three months after discharge. At that first appointment, he confirmed I had aphasia (something my SLP had already explained) and told me I’d had a cryptogenic stroke — meaning no known cause.Later, when he left the clinic, I wasn’t assigned a new neurologist. When I called about concerning symptoms, I was told to go to the ER.Eventually, my primary care nurse practitioner helped me find the wonderful neurologist I have now — someone who truly listens.

Mental Health Support

Depression and anxiety are common after stroke — especially when communication is hard. My NP referred me to several counselors; most had never worked with someone with aphasia.Two people helped the most: a psychologist in my primary care office, and later a neuropsychologist who used Acceptance and Commitment Therapy (ACT). Their understanding made a huge difference.

Peer Support

About a year after my stroke, I joined the Boston University Aphasia Center and finally met others who understood. Talking with people who had walked this road gave me hope and strength.

When I couldn’t find the groups I needed, I created my own — small conversation groups and a “presentation group” inspired by Toastmasters.

Today, I’m part of the National Aphasia Synergy Peer Befriending Program, which connects people with others who truly get it. I didn’t have that early on, but I’m so grateful to be part of it now.

Personal Network

My family has been my rock through it all. My husband, friends, and later my granddaughter have been part of the circle that keeps me going.

It wasn’t simple. It took asking questions, making calls, and sometimes saying, “I need someone more experienced with aphasia.” But step by step, I found the people who believed in me.

How to Advocate for Your A-Team

Advocating for yourself after stroke can be hard — especially with aphasia or apraxia. But it’s possible, and it’s powerful.

Here’s what I learned:

• Don’t settle for less. If a provider isn’t helping, it’s okay to ask for someone else. Mutual respect matters.

• Ask for experience with aphasia. Many professionals understand apraxia or dysarthria, but aphasia is different.

• Use every communication tool. Paper, iPads, text-to-speech apps — whatever helps you be heard.

• Practice advocacy phrases. Work with your SLP to practice short statements like, “I have aphasia,” or “Please give me more time.”

• Bring a supporter. A family member or friend can help take notes, ask questions, and back you up.

• Grow your confidence. Every time you speak up — with or without help — you’re building both your team and your voice.

  
  

Why the A-Team Matters

No one recovers from stroke alone.And no single professional has all the answers. True recovery takes:

• Expertise → each specialist sees something different.

• Support → emotional healing is just as vital as physical therapy.

• Community → connecting with others who “get it” brings hope and strength.

  
  

With the right people around you, recovery feels less like climbing a mountain alone and more like walking with guides who know the path.

✨ Takeaway Tip:Start where you are. Even if you only have one provider, ask, “Who else should be on my recovery team?” Keep asking. Keep building. Over time, you’ll find your own A-Team.

#blogboost #aphasia #apraxia #A-team

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.