What do you do as a patient with a progressive health condition that renders you unable to do certain tasks? Do you ask for assistance or find a work-around to accommodate for that situation? Once you ask for help, how does your relationship with your helper change?

Empathy word cloud

Learned Helplessness is, according to Wikipedia, “a condition in which a person suffers from a sense of powerlessness, arising from a traumatic event or persistent failure to succeed. It is thought to be one of the underlying causes of depression.”

Psychologist Martin Seligman coined the term, learned helplessness, in early research he did with animals, and eventually humans. This New Yorker article, “Trying to Cure Depression, but Inspiring Torture,” briefly describes different applications of the research.

In this podcast episode, Mike Hamlin, a man with myotonic dystrophy, sets the tone with a friendly rant. Melissa Dixon, Ph.D., a researcher and professor (Psychiatry and Behavioral Health and Pediatric Neurology) at the University of Utah, discusses learned helplessness with children and adults and how it impacts relationships and suggests empathetic communication styles.

Featured are four people — with their own unique health conditions — that are coping and making the best of the quarantine and pandemic.

Luda Gogolushko, who has SMA Type 3 and lives in Southern California, continues to write and publish from the safety of her home.

Lindsey Kizer, in North Carolina, gets to telecommute for her job and tries to maintain self-care routines to avoid narcoleptic flare ups.

Jay Carr, with myotonic dystrophy in Virginia, spends more time with his teenage son during the lockdown. He also cheers others with his humorous Facebook posts and musical interludes.

Peter Slobodnik, outside of Sacramento, keeps himself busy by making masks for friends and family while also planning an advocacy bike ride to draw attention to his rare disease, Hereditary Spastic Paraplegia.

Each of these podcast guests has found their own way to cope with the pandemic.

Woman received dental treatment

People with anxiety, autism, blindness or low vision, deaf and hard of hearing, mobility challenges, chemical sensitivities, or PTSD may face unique challenges visiting a dental office. Now with the additional barrier — the COVID-19 pandemic — many people are postponing or cancelling routine dental appointments.

Dr. Helena Caballero, a dentist in Northern California, discusses oral health and hygiene, how COVID-19 has changed dentistry, and modifications for people with disabilities.

For additional information, you can download Creating Disability Friendly Dental Practices from The Independence Center. For those with Parkinson’s Disease, additional information is provided to maintain dental health. For those with neurological disorders, there is an article, “Dental Visits Made Easier” offering helpful tips.

Here is an article that discusses the little dental coverage that Medicare offers.

That is me; I still have my hands, says the 4-year old girl after waking up in the hospital and being told by her mother that she had lost her legs. The little girl grew up to become Rumba with Tina. Tina Verduzco teaches a Saturday morning online dance class for BORP: Bay Area Outreach & Recreation Program.

Tina and Cynthia
Tina Verduzco, Cynthia Noonan & Freckle, Younger Tina

Tina, along with several other online instructors, help this podcaster maintain positive energy and a healthy mind, body, and spirit during the shelter-in-place period.

Cynthia Noonan, one of BORP’s Board of Directors, transitioned the in-person fitness studio in Berkeley, California to the virtual world where participants join in from across the United States and Mexico.

You are invited to join this online community; check out the BORP class schedule as well as other accessible exercise program offerings including Dance For All Bodies and Wheelchair Dancers. If you just want to see what a BORP class looks like, here are a few recorded BORP classes.

We’re not talking about your financial investments. How much of a health risk are you willing to take during the current pandemic? Do you wear a facial mask when you leave your home? Do you maintain six feet of physical distance from people who do not live with you? Are you avoiding crowds? Postponing health appointments?

As our cities and towns gradually open up, will you change your behaviors or wait for a reliable vaccine?

Transcript

Welcome to a science fiction movie. I can’t be the only one taunted by images from movies like The Andromeda Strain. Maybe you’re not familiar with that movie? I saw it in my youth – when I was most impressionable – and I often think about it. But more for its metaphoric value, not literally. I won’t delve into the plot; you can check it out online…somewhere. I wanted to share other movie references so I googled “movies about viruses” and it auto-filled…so, I know we’re all in this together. Suffice it to say, yesterday someone wrote an article, “The best movies about disease outbreaks.” Sure enough, The Andromeda Strain is on the list. This is not a film genre I’m fond of but I have seen several others on her list.

A few days ago I went to purchase N95 face masks on Amazon and I realized many resellers jacked up the prices…today I checked Purell sanitizer and the pricing is insane. I believe there is a special place in hell reserved for people who try to profit from those with illness, disability, and vulnerability.

Are we taking it to an extreme? If,, for some reason you haven’t guessed…I’m talking about the coronavirus or what is now being called Covid-19. Is that a character in the new Star Wars movie?

I wrote a short blog post a few days ago called Hand Washing – which is what everyone is talking about. It’s bigger than the Macarena. Do you wonder as you’re washing your hands…am I doing this right? Geez, maybe you have a college degree? Or you operate heavy machinery? Or you guess correctly for 90% of Jeopardy questions? Sure, a little soap, rubbing vigorously under water, move your fingers between the fingers on the hand…sing Happy Birthday twice if you want. I think most of us have mastered the task of hand washing. What else? Give me more practical advice…you think to yourself? Or, at least I do.

So…right now there are no travel restrictions within the United States yet I see plenty of signs that life is changing dramatically. I saw a post from someone who works for Microsoft in Washington state; he received a company email advising employees to work from their own home for the month of March. Today I heard Amazon and Facebook are doing the same.

In a Facebook group for people with my disease, someone in Australia posted that people are stock piling toilet paper, hand sanitizer, bottled water, dry goods. Apparently a woman at a Sydney grocery market pulled out a knife over not being able to get toilet paper; the shelves were empty. 

I’m not going to attempt to deliver any facts about the virus. Every other email I receive has something to do with it whether it’s from a health organization, a retail company, or a politician. I think the best source is the CDC website – that’s the Center for Disease Control – which is updating the information daily. Anything you read on Facebook or hear through friends should be taken as anecdotal. Like I just shared two Facebook stories with you – Microsoft and Australian supermarket. I assume they’re the truth but I won’t rely on it. Anyhow, they have nothing to do with what you’re most concerned about.

I think Trevor Noah on The Daily Show knows what we’re most concerned about. Their new nightly segment is called “Is this how we die?” I have a link to it on the Glass Half Full website. Anyhow, isn’t that what you’re thinking? I am! Sure, it’s morbid and totally depressing…but…having a chronic health condition with respiratory weakness…come on!? I’d have to be a fool not to take this stuff seriously.

The other day I went to lunch with a few yoga friends. Of the 9 or 10 of us gathered, most are in fine health. One woman is in her 70s and has a blood cancer which she receives treatment for. She told us that another woman – let’s call her K — wouldn’t be joining us. K is a world traveler, had just returned from India a few days before, and told a few people that she had a cough. As we were settling in with our food, K showed up claiming she had been given a clean bill of health after seeing a doctor and receiving a diagnosis of bronchitis.

Before K showed up, our conversation had already been focused on the coronavirus. One woman brought a big container of Clorox antiseptic wipes which we all used. We shared little tidbits of what we knew. One woman told us her daughter – who lives in another state — is worried about her because she’s in her 60s. As far as I know, she’s healthy. Only two of us at the restaurant had chronic health conditions. Did K think about us when she joined us? Even with a case of bronchitis it’s probably not wise for her to be out and about in public.

Perhaps unbeknownst to K, we struggled to make room for her at the table… at the far end of the table, away from the woman undergoing cancer treatment and myself. Everyone was polite but I could almost see the thought bubbles bouncing about.

Before our lunch gathering I debated whether to attend. I enjoy these women and only see them once each month now that I no longer attend the same yoga class. I knew K had been on an international trip but I wasn’t aware of her health status.

This virus presents many social obstacles. Do I stay at home to avoid contact with the general public? Do I attend my regular exercise classes and occasional lunches with friends? Do I partake in larger, public gatherings for music, performance, or even a sound bath meditation which attracts 100s in a facility such as  a church? Do I continue to have my monthly book club welcoming 10 or more people into my home for a few hours of food, fun, and discussion? Do I hug friends when I see them at my home or out in public?

Here’s a term I was not familiar with – social distancing. According to Wikipedia,

Social distancing is applied to certain nonpharmaceutical infection control actions that are taken by public health officials to stop or slow down the spread of a highly contagious disease. The objective of social distancing is to reduce the probability of contact between persons carrying an infection, and others who are not infected, so as to minimize disease transmission, morbidity and ultimately, mortality.

Social distancing is most effective when the infection can be transmitted via droplet contact (coughing or sneezing); direct physical contact, including sexual contact; indirect physical contact (e.g. by touching a contaminated surface); or airborne transmission (if the microorganism can survive in the air for long periods).

I saw a Facebook post promoting the use of jazz hands to greet people. This may be a joke…but…consider alternatives to hugging. I am.

         To what extent we change our habits, our rituals is really up to the individual. If you listen to a recent podcast episode, The Flu is Not for You: how to build immunity, my interview with a physician reviews general helpful practices to avoid contracting the flu and other airborne viruses. Washing your hands is one step but the other key behavior is to avoid touching your mouth, nose, and eyes. It’s hard but I know you can do it.

         As far as limiting my exposure, I am now avoiding places where large groups gather and space between others can be…cramped. Right now my places of exercise do not fall into that self-determined barrier. And when I see friends, I’m not hugging. Thankfully I have no travel planned until May which involves air travel. It’s a rare disease conference so I’ll wait to see if it’s still scheduled as the date approaches.

         This weekend is my birthday and in recent years my partner and I go away for a couple of days. Our local venture will be to Santa Cruz; I have made hotel arrangements and purchased tickets for a steam train ride; it’s open air and a short trip. We will go to restaurants but most of the time we’ll be outside at the beach or a local redwood forest. There is one indoor activity I want to do and I’ll investigate when it’s the least crowded. There’s some app available for that. anyhow, it’s Skee Ball at the Santa Cruz pier. I’ve loved playing skee ball since I was a kid…especially with the wooden balls. I promise to bring copious amounts of hand sanitizer.

         I’ve debated whether or not to cancel this trip. At this point, most of our infrastructure remains the same. Schools are open. Domestic flights are happening. Restaurants have regular hours though I’ve heard many Chinese restaurants have fewer diners…which is really sad to hear. I mean, this virus is all over the world. Have people stopped eating pizza because Italy is shut down.

         I’ve decided the trip is still on and I will be mindful of where I go, what I touch, and I will maintain my social distance, especially if I hear coughing or sneezing. I already do that.

         We can live in fear every day for all types of situations that are beyond our control. I live in California and for the past 30 years I’ve heard that the big earthquake is coming. Any day now. I’ve done all that I can do to prepare for the big quake. I’ve taken several different types of disaster preparedness training courses. We have all of our supplies – in the house, in the car.

         We live in a suburban area where crime does occur – car and home break-ins. What can I do – home security system, outdoor lighting, locking doors and shutting windows. We do what we can do.

         A threat like a pandemic flu is a real test of our ability to deal with uncertainty. And so many things are outside of our control which can make life scary or exciting. I’m not suggesting that contracting the flu would be exciting…just that once you accept the uncertainty you can be open to joyous surprises as well as real challenges.

         I wish I had more advice to offer. I am trying to be mindful…very, very mindful. Mindful of my actions and thoughts. I don’t want to get caught up with the panic and drama that can so easily happen when we’re faced with these overwhelming situations.

         If you are listening and you are a caregiver or a person who doesn’t have a chronic health condition, please try to be extra mindful of others who are potentially more at risk. If you have any respiratory symptoms…maybe it’s just a cold…but know that being around someone like me…I’ll hear your sniffles, your cough…and I’ll get a little nervous. So, if you’re someone like K – with bronchitis – stay home to avoid passing anything on to those with less robust immune systems.

         Get the flu vaccine even if you’ve never had the flu. Have you heard about herd immunity? If not, google it.

         I came across a recipe to make your own hand sanitizer. Check out the podcast notes on Glass Half full for the link to the recipe. I’m going to make some.

         Also, the 4 year anniversary for Glass Half Full is on March 16th. It’s a virtual party on Facebook and I promise we’ll take all necessary precautions so no germs are spread. The celebration begins at 5 pm Pacific time. There will be an interactive quiz with prizes so bone up on your knowledge of previous podcast episodes.

Well, not really. No podcast episodes for the month of May due to a very bad computer. Naughty as heck. She/he could have reminded me of their age (6 years!) and I would have paid attention…treated her/him as a respected elder…gone easier on her/him. But no! Poof!

So, I’m waiting on a new one. And like everything else now, it’s moving slowly…from China, or Japan. Who knows? Not much else I can do but wait.

But for YOU…I’ve got some YouTube videos: Quarantine Life, videos related to Movement & Exercise, or a cooking demonstration for those with swallowing difficulties.

Maintaining a regular exercise routine has been vital for my mental and physical health during quarantine; I put together this list of mostly free or low cost online resources.

I’ve written a few COVID-19 blog posts: How I Cope with COVID-19 and How I Exercise at Home with Myotonic Dystrophy. I’ve even participated in two webinars related to maintaining good nutrition during the pandemic: Food Preparation for the DM Community and Practical Strategies for Eating Well and Keeping Immune System Strong during COVID-19.

If you want some evergreen, relevant podcast episodes, you might consider starting a mindfulness or meditation practice. Or prayer as a healing modality, which I believe can be akin to meditation.

So many things can be therapeutic; you know laughter can be the best medicine? Have you considered Sound Healing? I’ve seen several practitioners taking their work online.

My mental and physical clarity is enhanced by my daily walk through nature. Even if it’s just around the neighborhood. Every day I discover new natural and human-made curiosities.

One of my natural relaxing remedies — and the most downloaded episode of Glass Half Full — is explored here.

I hope you’re taking good care of yourself. Personally, I’m in it for the long haul; I’ll wait for that vaccination. I’ll miss hugging, traveling, and eating in restaurants but…I’d like to be around for awhile. Take care XOXO

This month we have both Earth Day and Arbor Day so it’s high time to be amongst the trees. Even if you are hunkered down in the safety of your home during the pandemic, you can still derive healing benefits from gazing out of your window at nature’s bounty. If your window faces man-made materials, there is science proving that a photograph of trees can impact you in a positive physical and emotional way.

Verla Fortier, RN, author of Take Back Your Outside Mindset: Live Longer, Prevent Dementia, and Control Your Chronic Illness, shares some of the research she found about the healing powers of trees and nature. Diagnosed with systemic lupus, she was told to stay indoors to avoid the sun. And she did. Until she witnessed a noncompliant online support group participant.

Katherine Chen, meditation teacher, talks about Bodhi Meditation and its connection to nature.

If you can, go outside and hug a tree. And if you’re not sure what kind of tree you’re hugging, download a smartphone app:

If you, or someone you know, has a muscle or nerve condition such as Multiple Sclerosis, Spinal Cord Injury, Amputation, Osteoarthritis, Parkinson’s Disease, or a neuromuscular disease (i.e. myotonic dystrophy, SMA, Charcot Marie Tooth, Becker’s, ALS, etc.), here’s an opportunity to participate in a research study. No trips to a medical center or donation of muscle tissue required.

The Department of Rehabilitation Medicine at the University of Washington Medical Center has a variety of studies with different criteria. For Factsheets produced by UW — after a study has concluded — check this website.

Listen to an earlier podcast episode with a UW Department of Rehabilitation Medicine Research Study Coordinator about Resilience and Aging with a Disability.

For additional information about research studies discussed in this episode:

UW Community Health Study, Phone: 1-866-928-2114 Email: communityhealthstudy@uw.edu

UW CALMS Study, Phone: 1-866-928-2114 Email: calms@uw.edu

It’s April Fool’s Day so we’re mixing things up with an unhelpful advice rant. One can’t be positive 100% of the time. Now is the opportunity to share about all of the weird things people have said about our health conditions — whether it was a friend, an aunt, or even a health care professional.

Perhaps well-intentioned but definitely not insightful nor helpful advice. Most people with some type of chronic health condition have had this experience.

A panel of three previous podcast guests share their stories — from the hilarious to the frightening. Nancy, Melissa, and Laurel let it all out.

A retired nurse, physical and yoga therapist, and mental health professional offer strategies for coping with uncertainty, anxiety, and all those other emotions caught up in this season of the pandemic.

Verla Fortier, author of Take Back Your Outside Mindset: Live Longer, Prevent Dementia, and Control Your Chronic Illness, speaks about her experience diagnosed with systemic lupus and the discovery of the healing power of trees.

Tianna Meriage-Reiter, DPT, C-IAYT, and owner of the Mind-Body Movement Center talks about her new live streaming yoga classes available at her YouTube channel.

Lee Greenstein-Wein, MSW, shares how specific essential oils can help with situational anxiety or depression. An earlier podcast episode features other healing benefits of essential oils.