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.


Multiple Sclerosis & Mindfulness Meditation

Gareth Walker, in northern England, works as a police officer and has progressive multiple sclerosis. His daily practice of mindfulness meditation enables him to navigate the physical and emotional difficulties of living with a chronic health condition.

Walker was first introduced to a mindfulness practice when reading Wherever You Go, There You Are: Mindfulness Meditation in Everyday Life by Jon Kabat-Zinn. Walker is featured in Jo Marchant’s 2016 best-selling book, Cure: a journey into the science of mind over body.

To learn more about Gareth Walker and his practice, visit his website, Everyday Mindfulness.


Weather or Not

Is it the Indian Summer or what? The past two days have been scorchers in San Francisco and the East Bay. I watched with utter disbelief as my Facebook feed filled with images of iPhone weather apps displaying 107° – 110° temperatures. Sure, if you live down near Palm Springs or in Arizona this is common. But San Francisco where someone, maybe Mark Twain, said “the coldest winter I ever spent was a summer in San Francisco?”

I’ve had difficulty with warm weather ever since I was a kid. I despised the summers in Florida and rarely went outdoors. Everything was air-conditioned so you could mostly avoid the heat. But here in Northern California very few have air conditioners. But we do. It was the wisest investment I ever made.

Heat debilitates me. It doesn’t matter if it’s humid heat on the East Coast or dry heat out here. My body shuts down. I can’t talk, my breathing becomes quite shallow, and once I got very sick and went to the hospital. That was my bottom. And I do everything now to avoid that downward spiral.

I’ve met very few people with my condition that react this strongly to heat but I know it’s a common symptom for people with multiple sclerosis and others with compromised systems. And we’ve all heard how the elderly are impacted by heat waves.

I put out word — via Facebook — to local friends, and especially those with known health conditions, that our house was open to them if they need to escape the heat. A couple of friends came over today. But online there was discussion amongst other friends about their attempts at rigging a swamp cooler or high-powered fan. One friend let lose about air conditioners’ scourge on the environment. I countered with a comment about meat consumption and its toll on the environment knowing she is a carnivore. No response.

I trust that many of us try to do what we can in life to be good to each other, and the planet, but there will often be people who just don’t understand why we make the choices we do. There’s no real resolution to this blog entry but it did make me think of the many times I’ve heard other people with disabilities speak about family, or friends, who just don’t get their situation — why someone can’t eat gluten, or requires a chair with a high back, or needs to stand up frequently, or cancels a social engagement at the last minute?


Balance & Falling: The 1st Step

Let’s explore balance and falling. Erica Pitsch, PT, MPT, DPT, NCS, of University of California, San Francisco, talks about the various components of balance. You can learn more about the BalanceFit classes she teaches and here you can view her presentation at UCSF’s mini medical school.


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.


New Year Resolutions: “You must do the things you think you cannot do”

What type of resolutions might someone with muscular dystrophy, multiple sclerosis or Parkinson’s disease have for the new year? In this episode you’ll hear from several people living with chronic health conditions. Find out more about the role dance plays in Mindy’s life and swimming in Mike’s life from their participation at recent conference panel sessions.


A Woman’s Best Friend

Service dogs can be a best friend for someone with a chronic health condition. In this podcast episode Hazel Weiss, diagnosed with Multiple Sclerosis in 1989, talks about her experiences with first Hams and now Virgil. Melissa Marshall, featured in podcast episode, The Cancer Fight Song, talks about her new puppy-in-training.

Hazel mentions two organizations — Bergin University of Canine Studies and Canine Companions for Independence. You can read the policy on service animals at the City of Berkeley’s website.


Multiple Sclerosis & John Muir’s Great-Grandson

Diagnosed with MS as a teenager, Michael Muir spreads his “fun is therapeutic” philosophy while making the horse ranch experience accessible to everyone.

To learn more about Michael’s organization visit the Access Adventure website.

If you’d like to know more about hippotherapy you can listen to this panel session at the 2014 Myotonic Dystrophy Foundation Conference.