Dystonia-Parkinsonianism With the Stone Family from Maryland

Send us Fan MailIn this episode of Rare Connection, Joanna speaks with Jeneva and Roger Stone and their son Rob about living with Dystonia-Parkinsonianism, a rare neurological condition affecting movement and speech.Rob communicates using eye-gaze technology and shares his perspective on communication, independence, advocacy, caregiving, and his hopes for future employment. The Stone family also discusses ceiling-track Hoyer lifts, limitations in insurance coverage, and how the right equipment can improve safety and independence for disabled people and their caregivers.#denovo, #Parknson's Disease, #DYT16, #EyeGsze, #NonverbalSupport the show