Passion

At the recent Patient Advocacy Conference I attended, I spoke with a community member. We’ve previously met but I’ve talked more with his family members. He’s always seemed to be rather shy.

He asked me how I motivate myself. I’ve been asked this before. Many people with myotonic dystrophy experience both overwhelming physical fatigue as well as extreme apathy. The first time I attended the annual patient conference I participated in a panel discussion. Afterwards I had someone approach me with utter disbelief that I had the disease. Even though I appeared to be similar in age to her daughter, I appeared to function like a normal person.

The more you learn about the disease, the more you realize the diversity of symptoms and severity. I’m sure there are many additional factors the research community doesn’t take into account, i.e. my self-care routines are like a full-time job.

But getting back to this young man (age is relative and he’s ~20 years my junior) and his question. There are definitely no simple answers and no silver bullet. Some people have more of a cognitive impact from this disease while others have more physical manifestations with muscle weakness. And what about our other genetics? Maybe I have a more inherent motivation quotient than he does?

But I wanted to be helpful and I appreciated he looked to me for advice. I asked him about depression. Having a progressive chronic disease can definitely cause one to be depressed and lack motivation. I asked him what gives him pleasure and he talked about athleticism. I realized, through our brief conversation, that having a passion is integral to feeling motivated. That was what I was able to come up with…I have a passion and everyone I know who is faring well with a difficult situation also has a passion for something. You’ve got to harness that passion to get you through difficulties.

The passion may be to sing opera, sail a boat, climb a mountain, chair dance, write short stories, or empower others to lead healthier lifestyles. So, how do you find your passion?


Looking for an Escape

I have a friend who is clinically depressed. I know little about depression though I realize whatever I went through in my mid-20s was more episodic and temporary and nothing like what my friend experiences. She had a bout of cancer years ago and claims depression is far worse.

Recently when I saw her, on her brief venture away from home, I asked how she spent her days. I often ask “how are you” and I have become aware that this is a somewhat annoying question for her. Her depression has kept her from a part-time job while she tries to find the best medication to regulate her emotions. Actually, I think I first asked her what she was currently reading as I know we both share a love of reading. But she said reading is currently difficult as she has trouble focusing. So, that’s when I asked, “how do you spend the day?”

I think we know each other well enough that she wouldn’t perceive this as a judging kind of question. Because, well, I’m not. I didn’t know what to expect her answer to be.

What she went on to explain was her involvement with an online game. She’s mentioned this before but I may have dismissed it because I know nothing about online games. I’ve never done it beyond the early Facebook trivia quizzes. The type of game my friend participates in involves avatars and levels of complexity and what she stressed as working together as a team or community.

The avatar she’s created is someone very different than how she perceives herself. She’s more outgoing and vivacious in this online world.

I couldn’t hide my fascination and I continue to think about her sharing. Thankfully she’s able to find this endeavor, feel a sense of camaraderie and safety without causing any harm to herself or others. I say this because many of us seek a way to escape our current situation. There are infinite ways to escape but do they help?

I trust that in time her body will acclimate to a new drug regimen and she’ll be able to return to work.


Stories of Healing with Essential Oils

This episode features personal stories about how the use of essential oils has helped with a variety of conditions including depression, anxiety, fibromyalgia, fatigue, post-surgical pain and post cancer treatment.

If you’re interested in deepening your exploration of essential oils, please leave me a note here.

For information about Dr. Kris Gast’s medical practice you can visit her radiation oncology website or Beauty through Health website.

To learn more about Lori Melero’s alternative care practice, visit her website.

 


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.┬áCheck this map to see where your U.S. state is in terms of medical cannabis legalization.


The Science of Yoga

Murali in the cow-face pose

In this episode my guest, Murali Ventkatrao, discusses the yogic perspective on health and current scientific research exploring how yoga, pranayama (breathing), and meditation affect human physiology and has the potential to treat many pervasive diseases.

For additional information about Murali and an introductory webinar delving deeper into the science of yoga, visit the Ananda Institute.