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:

Transcript

welcome to glass half full with leslie krongold she shares her stories experiences and knowledge of living and coping with a chronic health condition learn about tools and resources and hear inspirational interviews that help you to live a life filled with quality and dignity with two decades of support group leadership leslie’s ready to help you make lemonade out of life’s lemons are you ready are you ready yesterday was earth day and tomorrow is armor day did you realize that arbor day is a holiday when people are encouraged to plant trees it started in 1872 with a man named j sterling morton in nebraska when he proposed the tree planting holidays and i guess it took off my love of trees has grown over the last few years i had my first forest bathing experience i virtually met verla fortier who wrote a book about the healing benefits of trees i started practicing bhagwa meditation which involves walking around a tree and the past six weeks the trees around my neighborhood represent the greater world outside of my home on our daily walks i’ve grown to really love a few specific trees and i’m motivated to learn more about different types of trees last month human furla in the podcast episode coping with coronavirus trees yoga and essential oils today you learn more about her journey to wellness brother brother lives in canada and spent her professional career as a nurse i asked her what led her to become a nurse probably started when my i was in high school my dad was diagnosed with ms and quite quickly moved from one cane to two canes to then a wheelchair and he was just such a lovely guy that i wanted to be around him and help him my mom taught me how to transfer him you know from the back uh you know things like that and uh you know i would get him up and then brace his knees against mine and push his knees back so he could stand up and then get him into the chair and then we’d laugh and i remember him just swallowing taking some time and then saying you know you did a great job there good for you and then giving me a big smile and that that was so nice and that happened so often whenever i helped him with anything and uh was such a positive sort of it was a natural for me to go into nursing and my mom was the same way so there was three of us girls the whole family we all we all did very well with with his ms and with and we were happy to have him um like a little hot shot i started out in the hospitals and the technical side of things in intensive care and all that and then quite soon became well i went over to india and found out that healthcare was more about you know public health and shelter and food and water so when i came i was much more interested in primary care so i don’t know how things are set up but in canada the government pays for the health care so all the money goes to hospitals and then they’re very well funded and then the rest of it goes to uh doctor’s offices so my interest was in getting more of that money and resources back into the community where we all are and sort of enriching that brother moved up the corporate ladder in her career and also taught at a university i asked her when her health took a downward turn to tell you the truth i was not really aware of how i was feeling uh for a very very very long time i i remember that we were this happy little family um you know this nuclear family mom dad and two little boys in large home in suburbia and then one day my ex-husband walked out the door and i had two little kids and i knew that i needed to keep them in their home and in their community so i walked over next door to the university and picked up a an additional full-time position there so i was i loved it i mean i loved i loved all the work and looking after the kids but i was just looking after everybody else’s needs for 10 or 15 years i think and if i had symptoms i just only just i didn’t do anything but work and look after the kids and sleep and it really wasn’t until they were university age that i just felt profoundly tired and i just thought you know i was 63 i thought i’m just aging and i found it difficult to walk but i always had but when i went to the gym that worked that you know that helped and um but i had i was i wasn’t able i was 63 so i really wasn’t able to do my work anymore at the university i just felt too tired and so i thought i think i’ll just go home to my to my town so i retired early and i thought oh i just can’t wait to get there you know i was thinking of all these uh things i would do swim in the lake and lie in the warm white sand and walk in the woods and you know i was really looking forward to it um yeah and then then that’s when i got my uh diagnosis i was diagnosed with uh systemic lupus and on the my blood work showed that i was on the you know the serious side of that and and when i saw my doctor i was just going in for a routine i had this rash on my face and uh but then she long time and she kept finding more rashes that i’d ignored and then she found big bald patches that i’d been covering up and ignoring too on the top of my head and then she asked me how was my joints and nerve pain and i guess yes i had that and and then she reached for my hands and she said we’ll do biopsy blood work but we’re looking at systemic lupus and um and she said and stay out of the sun because that could symptoms so at that moment i was just um i felt like all my dreams were of retirement were shattered right yeah so i but go home yeah i did go home and then i stayed inside was diagnosed with systemic lupus and on the my blood work showed that i was on the um you know the serious side of that and and when i saw my doctor i was just going in for a routine i had this rash on my face and but then she long time and she kept finding more rashes that i’d ignored and then she found big bald patches that i’d been covering up and ignoring too on the top of my head and then she asked me how was my joints and nerve pain and i guess yes i had that and and then she reached for my hands and she said we’ll do biopsy blood work but we’re looking at systemic lupus and um and she said and stay out of the sun because that could symptoms so at that moment i was just um i felt like all my dreams were of retirement were shattered right yeah so i but go home yeah i did go home and then i stayed inside having read verla’s book i knew there was a happy ending i asked her how she came around to taking a chance and not following the doctor’s orders what convinced her that the outdoors had something healing to offer her remember the day leslie i was just lying in bed scrolling through i joined every online lupus support group i could and i was i’m so used to leading them that i wasn’t even used to being so i didn’t even comment or anything i just scrolled and uh people were talking this one day about how we were all inside feeling like vampires and we had to avoid the sun because they do tell lupus patients that and uh then there was this one healthy looking person pretty healthy who had lupus and she said ongoing outside so far so good i put on my hat and sunscreen and and i thought what and by this time i really didn’t care anymore i thought i don’t even care if i get it you know if i damage my dna or whatever it is i’m going to go so i just was angry it was high noon i grabbed my hat and slapped on a bit of sunscreen and headed out i didn’t care and

i was walking for about five minutes and i started to just feel this relief you know i tell the kids it was like a in the pac-man game where you die and you get a new life i was just like powered up powered up and i i mean it just didn’t even feel real and i thought what first of all i didn’t want to go in again and then when i finally got in i remembered i had a bunch of nursing research skills and what anything in the universities that’s peer-reviewed on on trees or whatever so that’s when i started doing that and i kept going out regularly and then i just devoured the research the first piece of research i came upon was gregory bratman at stanford university and they were defining their terms and they were saying we’re going to look at this particular kind of thinking and it’s this thing called negative rumination and it’s the kind of thinking that goes what if um what if i didn’t get this disease if only there weren’t an epidemic why is my body breaking down why is this pandemic happening why do i have to be inside those kinds of questions and a parent regular kind of thinking that’s just the brain going haywire and they were tracking this and they said they wanted to know what happened if you go outside so they got a group and they put them in built um settings along a city street with just you know traffic and cement and then they put another group outside in around grass trees and shrubs in an urban environment and they found the people that were in the grass trees and shrubs just looking out on the san francisco bay area that they they had they did not have that broken record thinking it did not go to that part of the brain that i call the heartbreak hotel part of the brain it just did not happen whereas the people that were outside in the city streets that broken record thinking which we all have to some extent right it what i liked as a nurse is that they measured that part of the the brain they measured the blood flow that went there and when that blood flow goes there that’s when the thinking is activated but it didn’t so that that i loved and then those same researchers took it further and they said if this is happening within their that when we go outside we pay attention differently we softly focus on all kinds of things our eyes wander and that gives us our brain a break and when it’s getting a break it’s it’s resting and that’s what we need so that we don’t get that cognitive decline if we’ve got that that those thoughts circling around in our heads all the time the brain gets no rest and that leads to loss of shortened long-term memory loss of ability to concentrate loss of ability to problem solve and i think we all know this like when we’re worried about stuff we forget you know we we’re not paying attention we and just by going outside this don’t have to meditate or anything this just happens and so what they showed in the restoration theory it’s a real thing and when we go outside our brain rests revives and it improves our short and long term memory our ability to concentrate problem solve and learn new things and so that to me was huge because i was worried about dementia my mom had it um and it’s that kind of thinking where you look back and you feel embarrassed and this was a gift a gift i encourage you to read brother’s book which you’ll find the link to on the glass half full webpage she did a lot more research about the healing benefits of trees and green space earlier this year i signed up for a class offered at our local parks and recreation center called bodhi meditation i’ve never heard of this type of meditation but it sounded intriguing the practice essentially includes a circular walking around a pine tree alternating hand gestures and then there’s a seated guided meditation it was both energizing and relaxing unfortunately the class stopped meeting in early march due to the coronavirus i contacted the instructor catherine chen to ask her a few questions the version of this meditation that catherine teaches is named bodhi meditation because the leader of the organization is called grand master jin modi yet the practice is called energy Bagua

actually Bagua is they all starting from Tao dal permited energy Bagua so and then chibagua and the regular bagua the same however and there’s some development they am differently for example energy Bagua has been benefit a lot of people to improve their health physical health and mental health in many ways around the world but a lot of a lot of different practices is aiming different because some people learning other practice they have a different goal for us our mission is to impart this body meditation technique and to help others to eventually improve their health and improve their happiness and so what is the role of trees in the practice of uh you know an energy bang or practice

when we practice energy Bagua it’s actually is the philosophy of Tao with the young you know is the energy that of energy in our life and it’s also not the energy itself only it’s also the compassion the compassion towards yourself compassion towards others so when you practice energy Bagua is that you are actually a practice that with the nature you are kind of connect with the future and then you uh through the practice that kind of create a peaceful and very calm mind and that would benefit yourself physically at the same time and so when we did it in class because the weather wasn’t good you would always bring a potted tree what was your intention have you ever done it without a tree indoors or do you always you know bring some sort of potted tree inside we can see if two different two different aspects for example whenever we whenever we go to the nature when ever we go outdoor we see screen we see is the tree we see the flower the ocean the mountain that make people feel energetic feel good and and that kind of atmosphere and also the element of the future the nature is help us so when we doing energy Bagua we are feeling that we are join the nature and we also have the sense of connection with the nature and we do have the uh the people in occasion for example they travel to other country they of course couldn’t have a good tree that they choose to practice so a lot of them might be able to just do a few gestures in the hotel room but in the way they practice with the guided meditation and then guided the the way like when when i was practicing with you guys yeah that possible occasion that people don’t have a tree but they can still practice it’s first of all is the the matter of the mind and the nature and how you practice because meditation energy Bagua is seen as walking meditation is a state of meditation so when you’re practicing it if you don’t have a tree uh you have another way to practice but have a tree is preferable i would put that way well it was it was definitely a nice addition to learn more about bodhi meditation there is a link to a youtube video on the glassful website and i’ve also listed a few smartphone apps related to trees many of which Verla mentions in her book although many of us are still staying home and taking all necessary health precautions we still may have the opportunity to walk in green space around our neighborhoods of course this may not be possible for everyone if you live in an apartment building maybe you want to avoid elevators and being around people but there are studies that just looking outside your window at nature or even a photograph of nature can have a dramatic impact on your physical and mental well-being i invite you to be more intentional to make the time for this thank you for listening to glass half full leslie invites you to leave a rating and review on itunes this helps spread the word to others dealing with chronic health issues for show notes updates and more visit the website glass half full dot online glass half full dot online

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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.

How is the threat of Covid-19 (coronavirus) impacting your life? Beyond fierce hand washing, are you changing how you relate to others? Is social distancing keeping you indoors? Are you second-guessing where you go, what you do, and with whom you spend time?

You’re not alone. People with chronic illness and/or compromised immune systems need to be vigilant as well as mindful.

For a few practical tips, listen to this podcast episode as well as the earlier episode, The Flu is Not for You. Here’s a recipe to create your own hand sanitizer. And if you’re ready for a little levity, check out this reoccurring segment on The Daily Show.

Happy Birthday to you, Happy Birthday to you, Happy Birthday dear scared person, Happy Birthday to YOU

I feel this sense of uneasiness. It grows each day. I’m grateful for when my mind and attention are actively focused on something other than the coronavirus.

Then a news alert pops up on my watch or cellphone. Or I overhear a conversation. Or there’s an email message from my healthcare system. Or I tune into the news right before my near nightly indulgence of The Daily Show which entertains and slowly lulls me to sleep. It’s good to catch a few laughs after the news so I can re-gain my clarity.

What is within my control to protect me? According to my healthcare provider and the CDC, “wash your hands.” Well, I’ve got that one down even though I refuse to sing Happy Birthday during the process.

I’m avoiding crowds and I cringe if I hear someone near me cough or sneeze. I’m a little hesitant to hug friends now when I see them…but I have. It pops in my head when they’re approaching me for a hug…should I be doing this? This is the hardest part. I love connecting with people and don’t want to view other humans as pariah.

But we know so little about this virus. People are walking around, asymptomatic, and they could be carriers. As persons with chronic health conditions, we are more vulnerable. Some of us have compromised immune systems. I know a common cold can wipe me out and take close to a month for me to get back to my level of optimal health.

I wouldn’t call it a widespread panic but personally, the uneasiness is like an internal itch that tenses my nerves. It doesn’t help to have government leaders who lack knowledge and compassion.

I have no great words of wisdom to convey. I’m scared and I suspect many of you are too. I’ll take all of the sensible precautions.

Being diagnosed with a chronic, debilitating disease can certainly bring stress to one’s life. In fact, that stress can be significant enough to be called trauma.

How one handles this stress varies. Some people have amazing coping capacity and are hard-wired for resilience while others have more difficulty. None of it is easy.

Mary Holt, a Registered Nurse with a Master’s Degree in Counseling Psychology, shares her journey of loss and recovery and the profound impact a mindfulness meditation practice has had on her life and work. She brings this practice to the clinics where she helps patients and their families with neuromuscular and Parkinson’s disease.

Mentioned in this podcast episode is the annual International Rare Disease Day organized by NORD. Here are two relevant podcast episodes: Rare Disease and the Need for Research and It’s Not that Easy Being Rare.

Transcript

welcome to glass half full with leslie krongold she shares her stories experiences and knowledge of living and coping with a chronic health condition learn about tools and resources and hear inspirational interviews that help you to live a life filled with quality and dignity with two decades of support group leadership leslie’s ready to help you make lemonade out of life’s lemons are you ready are you ready

hello listeners we’re nearing the end of february which means it’s almost international rare disease day i have a rare disease do you there are over 6 000 rare diseases i know i’ve met people with a disease so rare that they’ve never met anyone else with it i can’t even imagine what that would be like recently at my monthly support group we had a family joined us who had never met people outside of their family with myotonic dystrophy if you’re diagnosed and you live in or near a heavily populated city you will hopefully not have to wait too long before you meet others with the disease we have a patient advocacy organization that has an annual conference and this conference has given me the opportunity to meet others with the condition who live throughout the us and other parts of the world we’ve had people in the conference come from new zealand south america and of course you know a few european countries so rare disease day celebrated on february 28th is a day of advocacy getting out in the public to let others know about your disease last year a group of us met at senator dianne feinstein’s office in san francisco this year we’re joining others with rare diseases at a local museum and park so check the gospel website for links to learn more about rare disease day maybe there is an event happening in your neck in the wood and i will also include a couple links to podcasts that i did specifically about rare disease day today though is not about rare disease as i mentioned i’m part of a patient advocacy organization which meets in person annually usually in a different location throughout the country and last year we met in philadelphia and one of the sessions i attended was titled mindfulness as a disease management strategy now you can just imagine how that piqued my interest unfortunately the session was less than 45 minutes but i could tell the presenter had more to offer so i introduced myself gave her my podcast calling card it’s actually a postcard um if you want one let me know anyhow she and i recently had a chance to talk mary hope is a busy woman she works at two different philadelphia clinics and has a private practice in addition to her academic work she’s a registered nurse and has a master’s degree in counseling she has a lot of lived experience mary was a caregiver for her husband and experienced his loss at an early age with two young children to raise she’s also been in recovery from alcoholism for a number of years i have always worked in my nursing career uh with chronic pain and chronic illness that kind had always been my path and then there were actually a series of events that had happened personally in my life and i had not been working for a time while i was pregnant with my second child and yeah it was just knew i had to get back into the workforce my husband had become quite ill and i you know of course he was not able to work so i really had to kind of get back into the workforce um you know kind of help provide for us in a sense in my two children so i saw this job posting that was for a nurse coordinator i loved always being able to kind of have that integrative model so i love the coordination piece and it was neurology so it was it was the mda als center of hope um and at that time it was at diversity in philadelphia and that was back 2005 and then i started there as a nurse coordinator full time and i was probably seven years or so and had had a master’s encounter with a specialization in psychological trauma and bereavement so working with people that had you know a focus of course of chronic illness terminal illness that was really one of my passions so when the mental health specialist left that center then i kind of moved into that role in terms of being able to support the patients and the families yeah all throughout the journey really from time of diagnosis or from the time that we you know began with them and then journeying for as long as they stayed with us you know for a number of years the rest of my time my other full-time work i actually do three things so my other full-time work is working with parkinson’s and i’m a nurse educator a clinical educator with that population so i work with people that have parkinson’s and their families and i work with physicians movement disorder specialists and i do educate food i teach the families and the patients how to use a particular medicine medication and injectable medicine for parkinson’s and really how to live well you know as best as they can with their parkinson’s and then outside of that i am also i have a private practice in terms of life coaching speaking mindfulness practice and things like that so i’ve always had a desire to have uh and my you know goal still one of my goals is to be able to do that more to be able to reach people in a way that to have a greater impact in terms of helping people so i when i was working originally with a neurology team and during that time i had had a meditation practice of my own i’ve been sober for a bit over 12 25 years and i’ve had a meditation practice of my own for a number of years and when i was at jefferson i was working with chronic pain patients and they had a center for uh integrative medicine so i went there and i took a mindfulness course a mindfulness meditation it was actually a stress management course and at that time i fully impacted and shifted my whole experience in my own life my professional work my recovery my own personal health in such dramatic ways that i went on for more training and really have been teaching and doing that practice and really focusing a ton of my work professionally around stress stress management and how it relates to our health and also how mindfulness can be a foundational piece of that in terms of helping people live well in the midst of chronic illness and terminal illness so what is psychological trauma when it’s boiled down it is trauma if we look at just trauma in and of itself is something whether it be an experience a situation or an event that overwhelms the system right overwhelm the system physically of course it could overwhelm the system of course which is my my specialization psychologically and mentally emotionally spiritually as well so that can come from a certain particular event it can also come from chronic exposure to certain things whether they be you know external or potentially internal you know somebody is chronically experiencing anything you know negative perceived as negative to the point where it over overwhelms our ability to kind of integrate our experiences on a healthy level for us to be able to function kind of day in and day out in a healthy way yeah because when i hear the term trauma i think of people with ptsd or um some sort of sexual abuse i generally might and i’m not you know a professional in psychological or mental health but i um i think of it as like an incident or series of incidents that are traumatizing but the way you’ve defined it it sounds as if just the diagnosis of a progressive chronic illness can serve as trauma

absolutely yes absolutely i’ve experienced that with people you know when we say in particular when we you know potentially give somebody the diagnosis of als or something um what can happen is that i mean on the flip side of this too i you know i don’t know if we’ll talk about it but is also the amazing resiliency of the human spirit in terms of being able to you know kind of integrate and wrap our brains around certain things and being able to function in the midst of these kind of crises these crises that happen in our lives but you know when somebody is you know faced with a situation that is in many ways i’m going to say potentially but can many ways alter their existence and how they perceive that it can absolutely be traumatic i was actually just this weekend i was working with our team our multidisciplinary team and in terms of the and talking about the effects of you know continually working with the population of you know in neuromuscular conditions and neurodegenerative conditions that you know it is a traumatic environment because we’re continually working with emotions that may arise from time to time such as frustration powerlessness not being able to make an effect potentially loss grief sadness you know and that can be incredibly distressing to the you know our mental capacity and our psychological capacity to be able to manage so how do you define resilience so i would define resilience as the amazing capacity which always seems to surprise me the amazing the amazing capacity of the human being and the human spirit to be able to integrate and rise above

what may be perceived as incredibly negative circumstances and find meaning continue to move forward um serve continue to serve in some way not that all of these are necessary but these are the things that i see in the people that i work with and the families that i really tiny amount like couldn’t even fathom what it’s like yet you are serving the world rising above taking your experience and helping others that is to me incredibly resilient because some people fold i also see a lot of people fold and i don’t believe that there’s a good a right or wrong necessarily we all do with the capacity that we have um but when you ask about resiliency it’s definitely i think you’re a living example of that so the session you read at the conference this year how i met you was titled mindfulness as a disease management strategy so i think we’ve led up to this right you talked about how mindfulness helped you and you your training and i’m assuming you’ve implemented it in all the work you do does a mindfulness training or does it as a strategy help build resilience for me personally you know mindfulness is kind of a buzzword around healthcare around the corporate world somewhat um and it really is a way of it really is a way of relating to the world you know i mean when i so i practice minds when yes there are strategies within mindfulness and from the bigger scheme it really is a way of relating to our life and our life experiences and ourselves and others um so it definitely can build resiliency because what mindfulness gives us is number one it gives us awareness so i’m not a and the other thing i want to say is it’s a practice so it’s something that is certainly cultivated over time i am absolutely not an expert it is something i practice every day um every moment of my life that i can become more aware so it gives us an awareness so we’re not just acting on autopilot so we have some sense of you know when we’re going down the rabbit hole per se so it gives us awareness and then it has this underpinning in terms of non-judgment and compassion so it offers me the opportunity to meet my life and my life experiences to number one become aware of my you know how i’m perceiving something and how i’m relating to it and then it gives me ways of coping with openness and non-judgment and compassion for self for others and for kind of life as a whole which is simple in words yet incredibly in light so yes it can 100 yeah build resiliency how do you do that in the clinic setting i mean i i’ve been to the interdisciplinary clinics in san francisco and at stanford you know for my disease and i imagine they’re kind of similar and you know i went for years i haven’t gone recently but i had a pt who i saw you know uh every year for many years and one of the last times i saw her and unfortunately she had to leave the clinic she moved away but she started talking about mindfulness meditation and i was blown away because it was such a departure from anything she spoke about before so i’m wondering you know is it something that the other clinicians are talking about too or is it just you that’s actually yeah that’s a great question so it is um it just depends on everybody’s level of comfortability uh in our life right now it’s not something that everybody talks about people they are becoming more aware of it and more i would say open to it you know whether that is because of you know kind of what i do you know i talk about there so i would love to see it one day as kind of a standard of care um interesting and really offering people ways to manage you know all of i mean you think i’m just thinking about the physical therapist so if your physical therapist is there talking about mindfulness meditation that shows huge kind of integration to me that says you know there’s a lot of integration there in terms of what can help support you that she’s not just just addressing you linearly right with a solo focus you know acknowledging the fact that you are simply as a being right you have a mind you have a body and you have a heart so how then can we because they don’t none of them operate individually so how is it then that we can take our health care management and also approach people you know i really meet people in the sense that you know that we each really do have the capacity within ourselves to kind of answer all the questions that we have and we do have the resources within us um whether we need to find some more outside but we really do have a that within us so i meet people hopefully with that uh intention that you really do have everything that you need um and my role with you is then just to help you uncover that and get clear what’s your relationship with yourself you know that’s a big thing so when i’m seeing people in clinic a lot of our conversation is around um what’s the you know what is the relationship with the illness you know a lot of people are you know fine you know quite they they’re angry they’re and those emotions sometimes are controlling them in ways that they are not even aware of and impacting choices that they make choices that they don’t make whether they’re going to use their walker or not use their walker whether they’re going to accept a feeding tube or not accept the feeding tube so how to how how help them explore the reasons underneath that why is it that you don’t want to use the walker when you’ve fallen three times right no not in a fault-finding way but just to help them explore that oh you know it means that um you know that much worse in my illness or i’m giving into it or you know what will people think of me i’m weak you know all sorts of things so um yeah so i really try to help them you know to provide a space for that to arise because the body does hold you know there’s a book called the body holds the score or keeps the score and it really i mean you know our bodies just like it needs to you know all these negative emotions they all kind of you know they can i mean whether we’re giving a space for them or not they need to come out some way right so especially people that have physical conditions you know like you all the people that i work with i i stress that it’s even more so important and myself you know i it is more so important if we already have a physical condition or a medical condition that we you know somehow manage the stressors and you know negative emotions in our lives when they arise because our body is already kind of working somewhat double time um you know to manage and you know negative emotions build up or not given space can just impact that in a profound way there’s a lot of research around that as well in terms of the cascade of events with the you know neural chemicals that kind of run through our body so i hope to just meet people you know i hope to just provide a space where people feel that they can uh you know be real and really explore what they need to so then they can make the best decisions that they can you know for themselves whether it’s using the walker or not using the walker having the feeding tube or not having the feeding tube so a lot of my work in the clinic is around life choices all the choices we have to make yeah i invite you to check out mary’s website especially if you live anywhere near philadelphia she teaches a variety of classes i wish i could take thanks for listening i hope you’re able to take away something you heard in today’s podcast and apply it to your life take care of yourself and i i hope to see you online in our facebook group on youtube instagram or on the glass f4 website thank you for listening to glass half full leslie invites you to leave a rating and review on itunes this helps spread the word to others dealing with chronic health issues for show notes updates and more visit the website glass half full dot online

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