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.

 


NorCal Resources Rock

I am so grateful for the move I made to Northern California in 1989…even if it included experiencing the Loma Prieta earthquake. This is really one of the most inclusive areas in our country, especially for people with disabilities. I know of a family that relocated to California from the Midwest so their severely disabled son could reap the benefits of the Regional Center’s services as well as other state resources.

And the Ed Roberts Campus (ERC) is definitely one of the amazing resources. Located in Berkeley, California — across from a major public transportation hub — ERC houses a number of federal, regional, state, and nonprofit organizations providing services and resources for people with physical and/or developmental disabilities.

Located at a fully accessible transit hub, the Ed Roberts Campus is a national and international model dedicated to disability rights and universal access.
The Ed Roberts Campus commemorates the life and work of Edward V. Roberts, an early leader in the independent living movement of persons with disabilities. Ed believed in the strength of collaborative efforts: He called it “working toward our preferred future.”

Yesterday I attended the Momentum Expo sponsored by the Center for Independent Living. Here’s a short video I shot while at the Expo. The event was free. I had the chance to find out more about new and existing organizations, promote the podcast, and see friends I know from various aspects of the Northern California disabled community.

One organization housed at ERC is BORP: Bay Area Outreach & Recreation Programs. BORP has an adaptive fitness studio at ERC where I take classes. In fact, Valerie Jew’s Integrative Healing class is there. Lately I’ve been attending a World Dance for All class held in the BORP fitness studio. The next podcast episode is all about Dancing so you’ll soon hear more about this class.


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.

 


That Peaceful Easy Feeling

To celebrate my birthday, one of my requests was a day at the spa. Not just any spa but this Zen-style spa out in the woods about an hour and a half from where I live. It’s pricey but it’s an experience. And that’s what I’m after — experiences — not more stuff. I’ve got enough stuff.

 The day began with a lovely drive on the back roads of Sonoma County. It was unintentional but the GPS fed us this circuitous yet gorgeous route. I saw parts of Sonoma I’ve never seen — so green and lush — it’s amazing how just a drive through more nature, less concrete, can ease your tension.

The massage treatment I signed up for focused on the body’s meridians and included essential oils. Surprisingly, the 75-minute treatment has you wearing loose clothing; it reminded me of a Thai massage I once had. Although I usually dislike lying on my stomach, I went for it in spite of the nearly constant sinus drainage I experience. The therapist moved my limbs in different ways than an ordinary massage would necessitate.

I didn’t fall asleep but I was very relaxed. It’s often disconcerting that you have to get up so soon after a massage but I felt a little less pressure here. I wasn’t forced to face the world too soon. What awaited me after the massage was a beautiful meditation garden which you enter through a gate that requests silence.

In the last couple of years I have a new respect for silence. I crave it. Is this part of growing older? Or perhaps it’s a result of having a neurological condition where I often find my senses overwhelmed by bright light and a cacophony of noise?

Seated under a pagoda sipping warm tea, I just watched and listened (and naturally shot a little video). My body was relaxed, my mind was relaxed. I was in the moment.

Can I capture this moment again and again? I want this moment to last longer. I want this moment to repeat, and repeat, and repeat.


Yoga & Healthy Aging: Maintaining Independence, Activities of Daily Living, and Equanimity

Baxter Bell, MD with yoga students in a restorative pose

Baxter Bell, MD is not just a family medicine physician, he’s also a certified acupuncture practitioner and yoga therapist. Together with co-author, Nina Zolotow, they wrote the book, Yoga for Healthy Living: A Guide to LIfelong Well-Being. Baxter talks about his journey and shares insight about what aging people care most about — increasing one’s health span, maintaining independence over time, and cultivating equanimity. The thousands of people that have attended his trainings or follow his blog are concerned about cardiovascular health, brain health, and stress management. Yoga can assist with each of these.

Please check out Baxter’s Yoga & Healthy Aging Blog, his YouTube channel, and his book.

Terms discussed in this podcast episode:

  • Asana: In yoga, an asana is a posture in which a practitioner sits; asanas are also performed as physical exercise where they are sometimes referred to as “yoga postures” or “yoga positions”. Some asanas are performed just for health purposes. Asanas do promote good health, although in different ways compared to physical exercises, “placing the physical body in positions that cultivate also awareness, relaxation and concentration.” (Wikipedia)
  • Savasana: corpse pose; is an asana usually done at the end of a yoga practice in which practitioners lie flat on their backs with the heels spread as wide as the yoga mat and the arms a few inches away from the body, palms facing upwards. (Wikipedia)
  • Pranayama: breath or life force; the word is composed from two Sanskrit words: prana meaning life force (noted particularly as the breath), and either ayama (to restrain or control the prana, implying a set of breathing techniques where the breath is intentionally altered in order to produce specific results) or the negative form ayāma, meaning to extend or draw out (as in extension of the life force). (Wikipedia)

If your interest is piqued, check out these earlier podcast episodes on resilience and equanimity.


Outliving My Mom

This photo is about 30 years old. It’s one of the last ones I have with both of us before her cancer diagnosis. In older photos she wore those awful turbans to cover her nearly bald head.

My mother was diagnosed with myotonic dystrophy (DM) circa 1990 before there was a DNA test available. When my parents told me of this diagnosis they never mentioned it was a genetic condition nor that it was serious. All I knew was that she appeared before medical students at the University of Miami School of Medicine so they could see that one leg calf had less muscle tone than the other. She had more severe health situations than thin calf muscles and had been repeatedly hospitalized.

In 1990 there was minimal information available about DM. As it turned out, so many of her health issues (gallbladder and GI problems, early cataracts, daily fatigue, respiratory problems, etc.) were related to the disorder. In the last few years there have been scientific studies looking at DM and cancer which suggest that people with DM are twice as likely to have certain cancers. My mother smoked her entire adult life, was often depressed, and drank alcohol daily — creating a fertile environment for the lung and brain cancer which caused her death.

We have also learned through scientific research that myotonic dystrophy, in addition to being passed on with 50% probability for each offspring, has a component called anticipation. Essentially this means that the severity of the condition increases with each generation and often with each birth. My parents had another daughter nearly two years after I was born but she lived only three days. Now I know this child had the more severe congenital form of DM.

So tomorrow I turn 56 years old; my mother died 6 weeks before her 56th birthday.

Searching the Internet, shortly after I was diagnosed in the late ’90s, I discovered a table with data showing the average life span for adult-onset DM being between 48-55. My mother fit that data set.

So tomorrow is bittersweet. I like to think that all of my self-care and positive attitude has pivoted me beyond the dire expectations. Yet these past few months have proven to be physically and emotionally challenging. My respiratory issues, and subsequent sleep study, show that I need breathing assistance at night. My energy has a marked decline and I worry that I won’t be able to recapture it.

Birthdays can be difficult for anyone after a certain age but perhaps more so when you have this anticipated early decline…each year represents more loss to come. I’ll be celebrating with a few friends at a karaoke bar and hopefully that will kick my butt into a more glass half full perspective.


Rare Disease and the Need for Research

February 28th is Rare Disease Day. This year’s theme is: Research. How can we support research efforts for our rare disease? We can donate to our patient advocacy organizations that

spearhead research efforts. And we, as rare disease patients, can participate in research studies and clinical trials.

This podcast episode features three individuals. Amy Lynn Ream and Dean Sage both participated in phase 1 clinical trials for a potential treatment for myotonic dystrophy. Hugo Trevino, who has spinal muscle atrophy (SMA), is in his third week of Spinraza infusions and already feeling positive effects.

Hugo recommends for all those with a rare disease, check out this link to see if you’re eligible to participate in any research studies.

If you care for someone with a neuromuscular disease — like myotonic dystrophy, SMA, or the 40+ other rare neuromuscular diseases — please donate to the Muscular Dystrophy Association.

 


Sickness & Grief: Lessons Learned

In the final stretch of fighting the FLU, I decided to explore why my immunity may have been off. It’s a story, a short story, that I hope is thought-provoking for you. 

If you’re interested in learning more about building your immunity, check out this month’s featured book selection in the side bar. For more on respiratory health, make sure you listen to this podcast episode. Check out the latest news about the flu season from the CDC.

If you want a reliable companion while fighting sickness, check out Alexa and the Echo Plus. Okay, Alexa is not a reasonable substitution for a human or pet but she never once complained that I was asking her too many questions.

Not a bad companion when you’re bedridden.