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.


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.


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.


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?


How Prepared Are You?

This month of September is designated as National Preparedness Month. It’s the topic of discussion in the most recent podcast episode and, apparently, in this first of a nearly daily blog post. So, how prepared are you?

Being prepared may be more than a checklist of items you should have on hand in the event of a disaster where you may need to leave your home or stay cloistered in your home without any outside assistance. Being prepared may be more of a state of mind…or, perhaps a peace of mind? It involves going through the mental process of what if scenarios.

What if I am unable to be at home and need to sleep elsewhere? This is how I brainstorm for a trip when I am traveling. My preparation always involves making a list several weeks before the designated trip. I originally had a template but things change so quickly that I need to re-brainstorm for each trip. What happens if I’m in pain/discomfort — what do I need? What helps me sleep? Depending on the weather, what do I need to bring?

I invite you to start that brainstorming process. Let me know what you come up with.


Preparedness is Universal: Planning for a disaster if you have a chronic illness, physical, developmental, or intellectual disability

September is National Preparedness Month. If you have a chronic health condition, an injury, or are physically, developmentally, or intellectually disabled there is additional preparedness planning you’ll need to do in the event of a natural (hurricane, earthquake, flood) or other type of disaster (terrorism).

L. Vance Taylor —Chief, Office of Access and Functional Needs at California Governor’s Office of Emergency Services, talks about his role in emergency management for the State of California as well as his role as a person with a physical disability (Limb Girdle muscular dystrophy).

Additional Resources to help with your personal planning and preparedness can be found at the following organization’s website:

American Red Cross

FEMA

Ready.gov


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.


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.


Ayurveda: Moderation is the Key

Shaaranya Geetanjali Chakraborty’s health journey includes many stops along the way before finding Ayurveda. Not only did the ancient tradition of medicine cure her of chronic constipation and eczema but it changed the course of her career. Shaaranya is a graduate of Vedika Global founded by Acharya Shunya, scholar of the Vedic Sciences of Ayurveda, Yoga, and Vedanta. You can learn more about Shaaranya’s work here.

For more information about Ayurveda, check out Acharya’s book, Ayurveda Lifestyle Wisdom: A Complete Prescription to Optimize Your Health, Prevent Disease, and Live with Vitality and Joy.