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My Journey with Meniere’s Disease: A Special Presentation

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On September 26th, I had the chance to give a talk about Meniere’s disease to a group of college students at the Jefferson College of Health Sciences in Roanoke, VA.

All the students are on track to become physical therapy assistants and would likely work with vestibular patients at some point in the future. It was the first time I’ve ever done anything like this before and I jumped at the opportunity.

When you live with a complicated chronic illness, the experience you have with your healthcare providers can make or break you. It can be the difference between having hope and giving up. Yet so many healthcare professionals approach their patients without empathy or emotion.

My hope was that by sharing some of the lessons I’ve learned on my journey with Meniere’s disease, these future caregivers might be able to be more effective and compassionate with their patients.

I wanted to share the video with you all but the recording ended up being way out of sync. Luckily, I was able to salvage the audio and clean it up as best as I could. It’s not perfect, but it’s definitely listenable.

I hope you enjoy my presentation!

What I cover in the presentation:

It was a wide ranging talk and and covered quite a few things.

  • A basic overview of Meniere’s disease
  • The story of my journey to get a diagnosis
  • My experience with multiple doctors
  • How the right doctor can change everything
  • The benefits of a personal support network
  • The importance of empathy in doctor-patient relationship
  • The disjointed nature of the US medical system that forces us to be our own advocates responsible for coordinating our treatment
  • How simply listening to a patients concerns and answering questions can change the quality of care
  • An overview of my advocacy work
  • Question and Answer session covering topics like:
    • Driving with a vestibular disorder
    • The fear of going deaf and learning sign language
    • The difficulty of making massive changes to your lifestyle
    • Anxiety and panic during vertigo attacks
    • How to treat vertigo attacks as they happen
    • The fear of having a vertigo attack

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4 thoughts on “My Journey with Meniere’s Disease: A Special Presentation”

  2. darkmagnificat

    You’re an amazing man on an incredible journey. I don’t have Menieres, I think, but I do have BPPV and vertigo attacks, and imbalance, and your story touched me deeply. I wish you all the very best, and think you’re doing so amazingly well.

    Reply

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