Glass Half Full with Leslie Krongold, Ed.D.

Tag: Charcot Marie Tooth

  • Hear Ye, Hear Ye: People with Multiple Sclerosis, Spinal Cord Injury, Parkinson’s or Neuromuscular Disease

    Hear Ye, Hear Ye: People with Multiple Sclerosis, Spinal Cord Injury, Parkinson’s or Neuromuscular Disease

    If you, or someone you know, has a muscle or nerve condition such as Multiple Sclerosis, Spinal Cord Injury, Amputation, Osteoarthritis, Parkinson’s Disease, or a neuromuscular disease (i.e. myotonic dystrophy, SMA, Charcot Marie Tooth, Becker’s, ALS, etc.), here’s an opportunity to participate in a research study. No trips to a medical center or donation of muscle tissue required.

    The Department of Rehabilitation Medicine at the University of Washington Medical Center has a variety of studies with different criteria. For Factsheets produced by UW — after a study has concluded — check this website.

    Listen to an earlier podcast episode with a UW Department of Rehabilitation Medicine Research Study Coordinator about Resilience and Aging with a Disability.

    For additional information about research studies discussed in this episode:

    UW Community Health Study, Phone: 1-866-928-2114 Email: communityhealthstudy@uw.edu

    UW CALMS Study, Phone: 1-866-928-2114 Email: calms@uw.edu

  • Fashion: Being Yourself, Expressing Yourself & Your Creativity

    Four women with different physical abilities talk about what fashion means to them and how they deal with fashion challenges.

    Cheryl and Lainie both have Charcot Marie Tooth (CMT) and wear AFO leg braces. Lainie explores fashion hacks and DIY solutions in her blog, Trend-Able.

    Keisha has Limb Girdle Muscular Dystrophy, studied fashion, and launched her company, Girls Chronically Rock.

    Kirsten Passmore has Cerebral Palsy and has been enjoying CosPlay for the past five years. Learn more about her organization, CosAbility, and see which conventions they’ll attend by liking their Facebook page.

    • Lainie
      Lainie of Trend-Able
    • Kirsten
      Kirsten of CosAbility
    • Cheryl
      Cheryl
    • Keisha of Girls Chronically Rock

  • Essential Nutrient for Emotional, Physical & Spiritual Health: Vitamin N (Nature)

    What is Nature and how is it beneficial to our emotional, physical, and spiritual well-being? Bonnie Lewkowicz (Program Manager, Access Northern California) and Lori Gray (Adventures & Outings Program Coordinator) both work for the Bay Area Outreach & Recreation Program (BORP) organization in Berkeley, California.

    Bonnie, Lori, and Delroy share their love of nature in this podcast episode.

    Both women use wheelchairs and have years of experience navigating hiking trails and organizing outdoor adventures for people with physical and/or developmental disabilities. Joining them is middle school teacher, Delroy Thompson, in South Florida. Together they share how important nature is for them.

    Bonnie wrote A Wheelchair Rider’s Guide published by the Coastal Conservancy. Delroy, is a member of the Muscular Dystrophy Association National Community Advisory Committee, and wrote a children’s book, The Secret of the Elves in Helen, about an elf kingdom n the Blue Ridge Mountains.

    Not everyone is fortunate enough to attend BORP events but you can search for similar organizations in your area at the National Center on Health, Physical Activity and Disability (NCHPAD) website.
  • The D Word: Disability

    The D Word: Disability

    October is National Disability Awareness Month.

    What does it mean to be disabled? A dictionary definition says it’s having a physical or mental condition that limits movements, senses, or activities. Does it coincide with the diagnosis of a chronic health condition? It didn’t for me. And even now I struggle with the term, and you’ll soon hear from a couple of my friends — Cheryl Sherman and Stephen Beard — who have also had difficulties with the term.