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


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.

Here’s an interesting article exploring how the Dutch handle falling issues.

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.


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.


Skydiving, Triathaloning, and Mountain Climbing!

Joe sky dives, Nancy runs, and Rob climbs

Three stories about people taking on physically and emotionally challenging adventures. Joe Akmakjian, who lives with Spinal Muscle Atrophy (SMA), is the first adult MDA National Ambassador. Joe celebrated his 24th birthday by jumping out of a plane with friends. Nancy, after surgery and treatment for ovarian cancer, trained for an AIDS ride and moved on to compete in triathalons. Rob Besecker decided to celebrate his recovery after a series of cardiac surgeries by climbing Mount Everest.

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.