Tag: invisible disability

  • Neuropathy: Patient Turned Advocate

    Neuropathy: Patient Turned Advocate

    Glenn Ribotsky, a Board member with the Western Neuropathy Association, shares his dramatic initiation as a patient into the world of peripheral neuropathy. Now, 18 years later he advocates and offers support to others experiencing the often, invisible pain of a neuropathy.

    Other organizations focused on research and support for those with a neuropathy include the Foundation for Peripheral Neuropathy and the Neuropathy Action Foundation.

    For those of you that came here looking for a photo mentioned in the podcast, it will turn up. Check back in a week. Thanks!

    Excerpt

    I’m actually one of those people. I’m fortunate in that I can actually distinguish, in my case the symptoms, and I’ll talk about why among different types of neuropathy. But I have problems where I have cervical spine impingement on my spinal cord, but I also have peripheral neuropathy. The impingement from the cord, though, tends to create symptoms that are much more localized because it said certain levels of the spine, in my case from C5 to C 7. In terms of that nomenclature, those symptoms are basically neck backs of shoulders and down the arms, whereas the more systemic peripheral things are body wide and the symptoms also are somewhat different. I mean, I get more typical compressive symptoms out of the cervical spine stuff as opposed to the other small fiber neuropathy. I have and define those terms for people, which is much more of a burning pain.

  • Rare and Invisible Disability + Spoon Theory

    Rare and Invisible Disability + Spoon Theory

    Traditionally the month of October is the time to become aware of people with disabilities — either a visible or invisible disability — but here we’re drawing attention to all those who face physical and mental health challenges. With 1 in 10 Americans diagnosed with a rare disorder (whether it’s a visible or invisible disability) and all of the others making up ~ 25% of Americans with chronic health conditions, let’s practice an awareness on a daily basis.

    Sunny Ammerman, NORD Ambassador for Indiana, talks about spoon theory, her role as a Patient Advocate for NORD and the Pituitary Network Association, and her blog, Insomnia Doodles.

    Earlier podcast episodes have explored Disability Awareness — The D Word and The Pirate as a Disability Action Figure. To learn more about Rare Disease, listen to this podcast episode, It’s Not That Easy Being Rare.

    Sunny is an avid gamer and Virtual Reality enthusiast; stay tuned for a future episode where she shares her love of VR.