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


Respiratory Challenges

Prepared for Overnight Sleep Study

You know when you have a progressive disease sometimes it seems like the next step — the new normal — is dramatic? It seems to come out of nowhere…whether it’s your mobility, your energy, breathing capacity, or any of the myriad of bodily functions that can decline.

Well, I’m there with respiratory weakness. Yet it didn’t really happen overnight. I can recall 10 or so years ago going to my annual visit at the Muscular Dystrophy Association Care Clinic and, after taking a rather simplistic diagnostic test, being told by the nurse that my breathing capacity was at 70%. I don’t think I took it seriously because the diagnostic device was rudimentary and I felt healthy.

A year or so ago I was supplied with a ventilator for night time use. The whole experience freaked me out and I couldn’t handle the forced air. I would sit with it for ~ 15-minutes and then stop. After a month or so I tried to take a nap with it. I couldn’t handle it. Long story short, I ended up returning the device. I told myself the pulmonologist was moving too fast…like installing an outdoor ramp over stairs when you’re still ambulatory.

This past winter was a difficult one for me — one respiratory issue after another and I didn’t seem to have a full recovery. I’m with a different healthcare provider now and went to see a new pulmonologist who scheduled me for a sleep study. It took a couple of reschedules on my part because I was in denial of what I must have known was the inevitable.

The overnight study was conducted in a hotel-like environment though it was far from a luxurious experience. The sleep technician set me up with a Bi or C-Pap machine at the start and I just couldn’t handle it. It was too forceful and I panicked. She wasn’t able to adjust the settings and eventually got permission to let the sleep study be a baseline without the intervention. I slept for ~ 6 hours. Within a few days I heard from a physician who analyzed the study; I’d never met him. His phone etiquette was…despicable. He admonished me for not using the machine and said I needed it. He also offered that I “have few options — the machine or a trach.”

This brief phone conversation set off a period of depression. I was not operating with a glass half full perspective. Thankfully my pulmonologist led me to what I thought was another pulmonologist colleague of hers but he is actually a Critical Care doctor. After our first meeting my spirit lifted. He is listening to me and really understands that I need to gradually ramp up to the optimal settings. 

These adjustments to a progressive disease — a new normal — are difficult physically and emotionally. I’m grateful to be working with a physician that gets it. I’m also grateful for two Facebook groups — one specifically for adults with myotonic dystrophy and the other for breathing issues related to having a neuromuscular disease. I’ve learned valuable information and received support from these cohorts.

So far I’ve acclimated to one air pressure setting increase and using the humidifier. I also fell asleep twice with both on. Small steps. That’s what I can handle. I’m feeling hopeful.


Everybody who is in a body can DANCE and move – it’s a right we all have

Co-Founder of AXIS Dance Company

International Dance Day is April 29th. Here in Northern California we have Bay Area Dance Week with all types of free dance classes and performances. As Judith Smith, co-founder of the physically integrated dance company, AXIS, says, “Everybody who is in a body can dance and move — it’s a right we all have.” And that is the message of this podcast episode.

Years ago when I held my first dance marathon to raise money for the Muscular Dystrophy Association a banner hung with the slogan, “Dance for those who can’t”

Fundraising event for MDA held in a mall in North Miami Beach, Florida ~ 1978

and that sentiment couldn’t be further from the truth. The AXIS Dance Company has included artists with physical disabilities, commissioned award-winning choreographers and composers, toured 100+ cities, and appeared on Fox TV’s So You Think You Can Dance. Opportunities for adaptive dance exist from here — BORP’s World Dance for All — to North Carolina where Mindy Kim teaches chair dancing.

Leia Cash, a lifelong dancer and educator, teaches adaptive dance classes at the Ed Roberts Campus in Berkeley, adults with Parkinson’s disease, and seniors at a residential facility.

 


Support Groups: Attend, Launch, or Facilitate

It’s all about support groups! Listen to several support group facilitators talk about their experiences attending and eventually facilitating a support group. Patient advocacy organizations represented include the Muscular Dystrophy Association, Multiple Sclerosis Foundation, and the FSH Society. Support groups organized through MeetUp cover chronic illness and life transitions.

For more information about launching a support group, check out this recent article in Quest magazine.

Feel free to comment here or on our Facebook page. If you facilitate a support group and want to be part of the conversation, contact us.


Every Breath You Take: Tips for Respiratory Health

It’s cold and flu season so I asked a respiratory therapist I know — Lee Guion — to offer some guidance. Here are Lee’s 7 Tips for Respiratory Health which are critical for those with a condition that causes weakened muscles:

  1. Attend a Multi-Disciplinary Clinic
  2. Get the flu and pneumonia vaccines
  3. Treat upper respiratory tract infections
  4. Hydrate
  5. Maximize your nutrition
  6. Exercise — especially disciplines coordinating the breath with movement
  7. Sleep Well

 

But this list is only a list. You should listen to the podcast.

There are many online videos to guide you in a practice combining breath work and movement but here’s one from the Niroga Institute for people with asthma.

Here are Homework Assignments for the rest of 2017:

  • Listen to previous podcast episodes about everything from medical cannabis to mindfulness meditation as well as fermentation.
  • Soon there will be cool videos here.
  • Check out this documentary film, Unrest. It’s a “story of love and loss” about people diagnosed with myalgic encephalomyelitis (commonly known as chronic fatigue syndrome).

 

 


Passion: Motivation to Move through the Bad Stuff and Experience Joy

Recently I attended an annual patient conference and had a conversation which served as a catalyst for a couple of blog posts and this podcast episode. What advice do you give someone experiencing apathy and a lack of motivation? How do you cultivate a passion which can make it easier to move through the challenges of living with a chronic health condition so you can still experience joy?

There are no easy answers.

Featured in this episode are three people I know who have shared their passion with me. Mindy brings her love of dance to our myotonic dystrophy community.

 

Hazel shares her knowledge and experience with service dogs to those with multiple sclerosis as well as other chronic health conditions. And James helps his co-workers and friends experience the Totality — and other celestial happenings.

To learn more about Mihaly Csikszentmihalyi and the flow concept, here’s a TED Talk, and the books I read: Flow: The Psychology of Optimal Experience  and Creativity: Flow and the Psychology of Discovery and Invention.


Patient Advocacy Organization

According to Wikipedia, a patient advocacy organization is, “an area of specialization in health care concerned with advocacy for patients, survivors, and carers. The patient advocate may be an individual or an organization, often, though not always, concerned with one specific group of disorders.

I’m an active member of two patient advocacy organizations. One of them had their annual patient conference last week in San Francisco. The conference location changes each year to provide opportunities for families to attend that may not have the resources to fly across the country. It was either the 8th or 9th annual conference and I’ve attended nearly all of them. Each year the conference draws more researchers and pharmaceutical company’s involvement but, thankfully, the heart of the conference remains with the patients.

I really don’t like using the word, patients, because it doesn’t necessary define us. And we’re certainly not sufferers or victims. We have a rare, genetic disease and it nearly always impacts several family members. The annual conference is more like a family gathering.

Over the years I’ve developed friendships with many of my myotonic dystrophy carriers and their families. I can really say I know someone almost in every U.S. state with the disease. It’s fascinating to realize that many of these folks I never would have met had it not been for this disease. Some live in more rural areas of the country. Others live in big cities but lead a very different life from mine. Yet at least once each year we gather together, share knowledge, laugh, eat easy-to-chew food, and maybe clink our glass of wine or beer.

Last weekend I came home from the conference exhausted but today I remembered the wonderful feeling of being surrounded by people who each understood why I walk a certain way, why my energy waxes and wanes, as well as why I carry around small servings of soft food.


Talkin’ Tech with a Software Engineer

That software engineer is Chris Schlechty — a fellow member of the Muscular Dystrophy Association’s National Community Advisory Committee. We talk about home automation, on-demand services, apps, self-driving cars, smart devices, and Seattle’s microbrews.

Check out the DO IT Center which is dedicated to empowering people with disabilities through technology and education. Chris has been involved with this organization since he was in high school.

 


Do It for Science: End of Life Decision-Making (# 1)

 

Laboratory technician at work.

If you’d like to plan for the future and bring peace of mind to yourself and loved ones, you can engage in end of life decision-making while you’re still of sound mind and body. In this episode, Katharine Hagerman, PhD, at Stanford University talks about biobanks. If you know nothing about biobanks, give a listen and learn.

Find out more about the Stanford Neuromuscular Biobank and National Disease Research Interchange.


Resilience & Aging with a Disability

Research findings from the Aging and the Quality of Life survey — conducted at University of Washington’s Rehabilitation Research & Training Center — report higher quality of life associated with a disabled person’s higher level of self-reported resilience.

After listening to this episode, check out this Fact Sheet for more information about building your resilience. Additional resources for building resilience can be found at the Greater Good Science Center and the book, Bouncing Back: Rewiring Your Brain for Maximum Resilience and Well-Being by Linda Graham.

If you’ve participated in research or clinical studies for your chronic health condition, please message me at our Facebook page.