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Carly Stoltenberg: An SLP's Journey Recovering from Guillain-Barré Syndrome (Part 1)

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This week on TWT, Rachel interviews Carly Stoltenberg! Carly is an SLP who was diagnosed with Guillain-Barré Syndrome (GBS) two years ago. At one point in her recovery, Carly was paralyzed and unable to speak. Carly shares her amazing journey to regain her ability to walk and talk, and how this has shaped her passion for positive thinking and patient advocacy!

Key ideas this episode:

🔑The critical need for patients to be able to communicate with medical professionals during treatment

🔑How Carly used low-tech AAC to communicate when she was paralyzed

🔑A resilient attitude isn’t about “not having bad days,” its about getting back up when you’ve been knocked down

 

Before the Interview:

  • How Rachel provides input, writes present levels, and collaborates with school clinicians for her client’s IEPs IEPs
  • Rachel likes attending the IEP meetings so everyone can talk about what they are seeing and, ideally, work together to come up with that is best for the student
  • Rachel’s Mom joining the Facebook group after working with a girl with complex communication needs
  • Rachel’s childhood full of bowl cuts and matching outfits for her and her twin brother
  • Rachel going to Kindergarten and the anxiety she felt being split up from her twin brother for the first time

 

During the interview:

  • Carly Stoltenberg, SLP for 24 years, was diagnosed with 2 years ago GBS syndrome
  • Experience being diagnosed with GBS
  • Usually paralyzes feet & arms, but GBS affected her autonomic nervous system as well – breathing, swallowing, etc
  • She had flaccid dysarthria and problems with vision
  • She couldn’t touch a communication board and didn’t have the strength and endurance to do laser pointers or eye gaze
  • She had someone read letters and she would open her eyes when they got to the correct letter
  • Her friends and family had 25 words that she needed most often they would use before they got to the alphabet system
  • Importance of communication between professionals, and the importance of admitting professional limitations
  • Educating others about the patent perspective, including feeding tubes
  • Rachel’s mother had GBS and had problems with diagnosis as well
  • Carly’s fear of being moved into long-term care permanently and not being able to walk again
  • Why patients need to be able to communicate about their treatment
  • Importance of a resilient attitude – its not about “never having bad days,” its about getting back up when you get knocked down and finding purpose in your trauma
  • Carly’s had this quote on her wall since her diagnosis – “You have been assigned this mountain to show others it can be moved”
  • Carly purpose she found in her trauma was to help others with GBS know they are not alone
  • Carly’s experience with chronic version of GBS called chronic inflammatory demyelinating polyneuropathy.
  • Skilled nursing facilities are not ideal placements for patients with GBS because of their acute rehabilitation needs, but getting insurance coverage for an acute care hospital setting can be challenging
  • Just because someone isn’t communicating verbally doesn’t mean they are not fully aware of what is being talked about

We want to know what you think! You can connect with us at our Facebook group Talking with Tech, on Twitter, and Instagram (@talkingwithtech)! Also, please subscribe and post a review for us on iTunes – it helps others to find us!

Links:

Interested in earning CEU’s by listening to “Talking With Tech”? Check out our course at bit.ly/twtcorepd.

Credits:

Hosts: Rachael Madel and Chris Bugaj

Producer: Luke Padgett

Audio Engineer: Michaela Ball

Music: “Ebb and Flow” by Fabian Measures

May 15, 2019

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