Social Media & Chronic Health Conditions: Patients and Caregivers

Is using Social Media important to you? Which platform do you use to find support from others with the same chronic health condition? If you’re a caregiver, do you access an online group to connect with other caregivers? Maybe you use social media to help educate or advocate for a particular health condition? This podcast episode explores how a variety of patients, and caregivers, use Facebook, Instagram and other social media platforms to do what they need to do.

You’ll hear from people with chronic health conditions: Toni Bernhard, best-selling author, and in 2001, initially diagnosed with an acute viral infection—but has yet to recover; Chris Schlecty, a Microsoft software engineer in Seattle, living with limb-girdle muscular dystrophy and Dean Sage, an attorney in San Diego, diagnosed with myotonic dystrophy.

Also included are caregivers — Loraine Dressler, retired nurse and caregiver for family members and Marla Murasko, Down Syndrome Mom Advocate & Inclusion Influencer.

In a post on the WEGO Health website, these links provide instructions on how to protect your private information on Facebook:

Newsweek, Facebook Data: How to Protect Your Private Information

Trusted Reviews, Facebook Privacy Settings: 18 changes you should make right away

Mashable, How to See All the Weird Apps That Can See Your Data on Facebook


How Can Music Help Us?

Singing along to classics from my youth definitely has a positive effect on my mood. From sharing a karaoke night with friends to learning about music therapy from a licensed creative arts therapist, this episode explores the healing power of music for young and old with conditions ranging from autism, dementia, and Parkinson’s disease to persons healing from trauma.

Laurel Roth Patton — mental health consumer, advocate, speaker, and writer — and I talk about our different karaoke experiences. Juliane Kowski, LCAT, MT-BC, MA — of Music Connects — discusses what music therapy is and how it varies depending on the client and what they need.

 


Preparedness is Universal: Planning for a disaster if you have a chronic illness, physical, developmental, or intellectual disability

September is National Preparedness Month. If you have a chronic health condition, an injury, or are physically, developmentally, or intellectually disabled there is additional preparedness planning you’ll need to do in the event of a natural (hurricane, earthquake, flood) or other type of disaster (terrorism).

L. Vance Taylor —Chief, Office of Access and Functional Needs at California Governor’s Office of Emergency Services, talks about his role in emergency management for the State of California as well as his role as a person with a physical disability (Limb Girdle muscular dystrophy).

Additional Resources to help with your personal planning and preparedness can be found at the following organization’s website:

American Red Cross

FEMA

Ready.gov