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.


Medical Cannabis

This podcast episode explores the experiences of six people who have used medical cannabis for a variety of conditions including cancer, depression, muscular dystrophy, fibromyalgia, chronic fatigue syndrome, bone fracture, and bipolar disorder.

There’s a lot of information about medical cannabis but I recommend watching this CNN documentary. Check this map to see where your U.S. state is in terms of medical cannabis legalization.


The Healing Power of Touch

Acupressure, Swedish, Shiatsu, Reflexology, Cranial-Sacral, Rolfing, Sports — these are all different massage modalities. Carl Johns, massage therapist and instructor at McKinnon Institute, practices what he calls Acucraniatsu.

In this podcast episode Carl answers my questions about medical massage, reflexology, and working with clients who have a chronic health condition.

A couple of books Carl mentions are: Job’s Body by Deane Juhan and Touching: The Human Significance of the Skin by Ashley Montagu.


Sassy in a Wheelchair

Tis the season to talk romance and who better to hear from than our disability community sexpert, Dr. Danielle Sheypuk? Danielle — a licensed psychologist in New York City — discusses dating, sex, society, and disability.

For more information about online therapy, visit daniellesheypuk.com/

On a different note, here’s a webinar with Dr. Sheypuk on Coping with Depression.