Maybe you were part of last year’s inaugural May Movement Challenge? Here’s a video showing the highlights from a month-long array of free, accessible online movement classes.
This year we have several of the same movement instructors as well as new instructors — all offering their time and talents to help you get excited about a movement practice. Check out this webpage for class schedules and registration information.
New this year are Nature Sundays. In the Movement ChallengeFacebook Group you’ll be introduced to movement practice out in nature, such as Forest Therapy. If you’re on Facebook, just join the group for further details.
Loneliness is a public health issue. It was before the COVID-19 epidemic forced us into social isolation. Former U.S. Surgeon General Vivek Murthy called loneliness a “growing health epidemic,” and even wrote a book about it – Together: Why Social Connection Holds the Key to Better Health, Higher Performance, and Greater Happiness.
In the United Kingdom they take this issue very seriously and now have a Minister of Loneliness. Sophie Andrews started an organization called The Silver Line which is a helpline for lonely and isolated seniors.
Does loneliness impact those with chronic illness and/or disability more than the general population? Curious to know how you rate on the Loneliness Scale or maybe you’d like to take a quick quiz for a less robust assessment.
In this podcast episode we explore that question as well as the antidotes for loneliness. In this presentation for the University of Utah’s Program for Inherited Neuromuscular Disorders, I discuss how I’ve handled social isolation during the pandemic.
My friend, David, talks about the Big & Mini online program he’s become involved with as well as Quarantine Chat.
Although geared toward an older audience, Humana has a toolkit full of ideas on how to combat loneliness.
Loose Transcript
This podcast episode is about Loneliness. My interest in this topic was sparked a year ago when I heard a British woman – Sophie Andrews – speak at an event I attended. She had already done a TED Talk two years earlier. Her story is a captivating one, which I won’t go into now; you can check out her 15-miin video online. But due to her early life experiences, she learned how a listening ear can change someone’s life direction. She founded an organization called The Silver Line which is a helpline for lonely and isolated seniors.
In Sophie’s talk – as well as in subsequent articles and books that have been written – we learn how loneliness is of epidemic proportion. Research studies have found that loneliness and social isolation is often correlated to high mortality rates and deterioration of both physical and mental health. In the UK the concern about this public health issue has launched a new government position – the Minister of Loneliness. Seriously. In 2018, Tracey Crouch became the world’s first person to assume this role.
The former U.S. Surgeon General, Vivek Murthy, called loneliness a “growing health epidemic,” and this past April his book, Together: Why Social Connection Holds the Key to Better Health, Higher Performance, and Greater Happiness, was published. I have the book, started reading it but unfortunately I’m far from finishing it.
But, earlier this year, I was taking my first-ever class in public health – at a community college in downtown Berkeley — and decided my final project for the class would focus on loneliness in the chronic illness and/or disability community. I was curious to find out if this was similar to what is explored with older people as well compared to the general population. Is Loneliness more common in our community regardless of age?
On March 1st of this year, I posted a poll in the Glass Half Full Facebook group with 6 responses to the question, “Do you experience a sense of Loneliness?” It’s a small sample but the response, “Yes, I often feel lonely even though I have friends and family” received the most votes followed by “My loneliness is a symptom of being homebound with limited exposure to people outside of my family.” Personally, I don’t know most of the respondents though two of them I do know. They’re both caregivers. And they’re lonely.
And just as I was starting my research, I stopped going to the class due to the pandemic. How ironic to be taking a public health class that is pre-empted by a pandemic that creates an even more powerful experience of loneliness and isolation.
I did have time to gather a few academic research articles relevant to the topic but it is certainly not an exhaustive body of literature. I have no definitive answer to the question – is loneliness greater for those with chronic illness and/or disability? I mean, right now…so many of us have dramatically changed our social networks. Hopefully, many of us have found some solace online; I mean the Zoom stock has skyrocketed. I use Zoom almost daily. But, I digress.
The five research articles I found are from different journals – Cognition and Emotion, Caring Sciences, Social Psychiatry, Social Behavior and Personality, and Community and Applied Social Psychology. Three are European studies – Dutch, Danish, and Norwegian — and one Canadian and one from the U.S.
Most of these article reference Robert Weiss who in 1973 conceptualized loneliness as perceived social isolation and described it as a gnawing, chronic disease without redeeming features. He identified six social human needs that if not satisfactorily met lead to feelings of loneliness. The needs are Attachment, Social Integration, Nurturance, Reassurance of worth, Sense of reliable alliance, and guidance in stressful situations.
So if you start with Weiss and his theory on loneliness from 1973 you can find 47 years’ worth of discussion. But, I didn’t dig deeper and I assume you won’t either.
So…isn’t loneliness normal at different times in our lives? Like, depression is something many of us have experienced from time to time. I’ve gone through brief periods of depression linked to an unfortunate experience but I’m not clinically depressed. I’ve also experienced a sense of loneliness at different times. Although I had many friends throughout grade school, I really didn’t feel heard or understood until my first year of college when I embarked on my first true romantic relationship. That’s a powerful feeling and unfortunately, more rare than I’d care to admit.
Robert Weiss, in fact, does make a distinction between social loneliness and emotional loneliness. Perhaps right now, during the pandemic, many people feel more of a sense of social isolation but still maintain a sense of emotional contact through the phone, internet, or at a six foot distance.
I can remember being at parties, surrounded by friends and acquaintances, and feeling alone. Just not in the groove of connecting with others. And I’ve been in situations where I was surrounded by dogs – at someone’s home when a party was taking place – and finding solace and connectedness with the dogs, rather than the people. Okay, that was a slightly drug-enhanced experience. But, the point is…being alone and lonely are not synonymous. And feeling lonely can be temporary or in some cases, the norm.
Let me get back to these articles I read. Only two of the five were specifically related to people with chronic illness and/or disability. In the Danish study they wanted to find out who were high risk groups for loneliness. They used a self-report survey with over 33,000 Danish citizens and found these factors were associated with a higher risk of severe loneliness – being a member of an ethnic minority group, receiving disability benefits or unemployment, living alone, having a prolonged mental disorder or psychiatric treatment. Severe loneliness was reported for just under 5% of those responding to the survey. Another 16+ % of the group were classified as moderately lonely.
One article teases out the distinction between solitude and loneliness whereas solitude expresses the glory of being alone. This article also briefly examines social isolation among the non-human animal kingdom and cites studies where fruit fly’s lifespan was shortened, obesity and type 2 diabetes developed in mice, the immune system of pigs was impacted, and other negative physical responses in a number of animals – all due to social isolation. The Canadian study compared a group of 274 adults with physical disabilities (MS, osteoporosis, Parkinson’s disease, arthritis, and “other”) with a group of 319 healthy adults without chronic illness. Each participant responded to the Loneliness Questionnaire and sure enough there was a statistically significant difference for people with chronic illness. They had a greater experience of loneliness as compared to the general population.
So…what’s the antidote? What can we do about it?
Before I skip to the brighter side of this theme, are you wondering how lonely you are? I mean, how do you compare the experience of loneliness? We all have different expectations from our varied social networks. And I’m not talking about the movie with Jesse Eisenberg portraying Mark Zukerberg. A social network, or support network, or social circle, essentially refers to humans in your orbit. A network of social interactions and personal relationships. This may include family, work colleagues, friends, or even the barista at the coffee shop you frequented every day…before the pandemic.
I tend to think of my social network as the people in all of my disparate little communities – my life partner, my neighbors whom I tend to see more frequently than most friends now, all of my Zoom buddies from dance and exercise classes, book club, support group, happy hour with my high school graduating class…
I strongly believe that my ever-expanding panoply of small groups helps me combat loneliness, helps me be resilient. Sometimes I don’t feel these connections as deeply intimate; I mean, how close can you be to many people? I’m not saying quantity wins out over quality…but…over time I have re-adjusted my expectations.
But let me get back to the antidote. I hope to shed light on all types of resources and inspirations for you to mitigate some of the loneliness you may experience.
So, how lonely are you? right…that was a question I posed. Considered the Gold Standard, the UCLA Loneliness Scale is a 20-item scale designed to measure one’s subjective feelings of loneliness as well as feelings of social isolation. I’ve provided a link to this in the podcast notes at the Glass Half Full website. There’s also a shorter, and less robust, quiz available at the website. I scored 19 which puts me at average for feelings of loneliness.
But how you score isn’t really important. It’s how you feel.
Last week I received a sample issue of O in the mail with my AARP magazine. O is Oprah Winfrey’s magazine. I was flipping through the magazine and saw an advertisement for a special O supplement called The Power of Connection: Your Guide to overcoming loneliness, building community, and finding joy in every day. Now, I’m not suggesting you go out and buy this. It’s pricey; I got it on Amazon. And I certainly don’t profit from this announcement…no free cars for me. But, it’s pretty good. Far easier to digest than the research journal articles I read and most of the short articles reflect solid research. And there’s stuff in there – antidotes for loneliness — that I’ve talked about – book clubs, exercise classes, support groups. Hell! Maybe Oprah’s been listening to the Glass Half Full?
The antidote is Connection. We are social animals. We need each other. Sure, there are introverts and extroverts. But…whatever dosage you require, we still need each other. And pets are great. We’ve got five cats. I love them. But, I still need to connect with other humans. To laugh. To converse. To listen to and be listened to. Even to argue with.
Sometime last year I listened to a podcast interview with Vivek Murthy, the former U.S. surgeon general I mentioned earlier. I believe he said, “Loneliness is a subjective discrepancy between our actual level of social connection and our desired level of connection.” We’re all different in terms of how much connectivity we require. He spoke of a few antidotes but stressed one solution is serving other people. It shifts the focus away from you and reaffirms that you have value to offer.
In October I spoke at an online conference for the University of Utah’s Program for Inherited Neuromuscular Disorders. The title of my presentation was Making Connections. I spoke about my early experiences of forming social networks and what I’ve been able to cultivate during the pandemic. I invite you to check it out; perhaps it will spark some ideas for you?
One of my friends, David, has found unique ways to connect with others during this period. David lives alone. According to the U.S. Census Bureau survey in 2018, 28% of households in the U.S. are occupied by only one person, and this number is increasing. David doesn’t have a chronic illness or disability but, as I said, he lives alone and is a young older person. In one of the research articles I read for this topic the researchers assigned names for different age groups; apparently I’m middle-aged, at least for two more years. And David, who is ten years older than me, is a young, older person.
Anyhow, we had a conversation about two things he’s discovered during the pandemic – Quarantine Chat and Big and Mini.
If you check the Glass Half Full website there’s a link to a video about the Big & Mini program featured on the Today morning show where David makes a cameo appearance.
Another antidote for loneliness that I gleaned from an article in a magazine is to focus on increasing your circle of concerns as opposed to your circle of friends. It helps shift your focus to a collective connectedness where you can feel a part of something bigger than yourself.
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 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.
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.
If you have a physical or mental health condition that has altered the way you look or behave, it may scare people. Have you had friends or family members change how they interact with you or perhaps distance themselves?
A recent incident with an old friend got me thinking about this topic. In the Glass Half Full Facebook group some have shared their stories. I invite you to share your experiences either in Facebook or in the podcast notes on the Glass Half Full website.
An echocardiogram technician told me I have a beautiful heart and that got me going. What makes for good heart health? What role do genetics, lifestyle, and environment play?
Dr. Erica Pitsch talks about the Framingham Heart Study, John talks about congestive heart failure and Mended Hearts, and Saurabh shares how yoga and meditation help his stress level and coping with myotonic muscular dystrophy. For additional tips on heart health, check out the Harvard Heart Letter.
Earlier podcast episodes you may find of interest:
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 every year there are a few diagnostic tests i need because of my myotonic dystrophy some of these tests are to monitor my heart because many of us with myotonic dystrophy have electrical conduction issues and eventually require a pacemaker a couple of weeks ago i was at my local Kaiser Permanente hospital getting an echocardiogram if you’re unfamiliar with this test it’s not painful it’s just a bit awkward you lay or lie half naked on your side the technician rubs something like Vaseline on your upper body and presses deeply with a probe while looking at a screen displaying your beating heart my session lasted for about 30 minutes
Mary Lou, my echo echocardiogram technician, commented that i had a beautiful heart this was a surprise i didn’t interpret it as a flirtation but a great conversation starter i asked her what other hearts look like what made mine so beautiful she told me about dirty looking hearts from years of smoking she sees a lot of hearts and assured me that there are many differences i envisioned her writing poetry based on the beating heart she looks at for hours and hours each week later that day as i swelled with the news about my beautiful heart i realized valentine’s day was approaching and that’s how this episode came about i suspect the health of our hearts is due to many factors some genetics some lifestyle choices and some environmental factors we have little control over according to the American Heart Association ideal cardiovascular health is a combination of four healthy behaviors and three health measurements the behaviors are not smoking maintaining a healthy weight exercising regularly and eating a healthy diet the measurements include total cholesterol under 200 milligrams per deciliter blood pressure under 120 over 80. and fasting blood sugar under 100
Not adhering to those guidelines can result in all sorts of problems including heart failure stroke diabetes and the list goes on in fact in a recent issue of the university of California Berkeley wellness letter there’s an article about the relationship between heart health and brain health many studies have found that cardiovascular risk factors in middle age are associated with the likelihood of developing dementia later in life back to the behaviors i don’t have anything to say about smoking or healthy weight but diet and exercise are something I can speak to
You can probably find many dietary plans focused on heart health on the internet in producing some of the newsletters i read i found something about nuts this is based on a Swedish study that found people who snack on nuts three or more times each week had a lower risk of atrial fibrillation so add nuts to your diet in an Australian study with nearly 1 000 older women those that ate three or more servings of vegetables each day fared better than those who ate two or fewer servings each day the study also found cruciferous vegetables that would be like broccoli cauliflower those were the most beneficial one of my favorite newsletters is Dr. Andrew Weil self-healing a few years ago in an article titled rethinking dietary fats and heart health he gave a thumbs up to butter and a thumbs down to red meat and processed meats in terms of their impact on cardiovascular health in the tufts university health and nutrition letter i made a minute study with middle-aged men those who ate higher amounts of protein were at a higher risk of heart failure than those who ate less protein and i think we’re really talking about animal protein so maybe just maybe my heart is beautiful because i gave up meat over 30 years ago
Enough about diet let’s turn to physical activity physical therapy professor Erica Pitsch at the UCSF school of medicine had this to say during a recent interview i’ve seen a lot of people that you know it was multiple diagnoses that have a good exercise ethic and they tend to fare better and there was actually a study number of years ago called the Framingham heart study which followed people for decades and people who exercise have less probability of dying of anything and was it in general thousands of people in the city yeah oh no in the us okay yeah great this is yeah it’s called the Framingham oh now i gotta google it now Framingham heart study but yeah no it’s it’s the exercise improves overall survival in general you can find the link to the Framingham study on the glass cellphone website as well as links to two previous podcast episodes with professor Pitsch one is about stroke survival and the other episode is all about balance and falling i admit it’s difficult to glean the best dietary advice from research since one month there’s a study that finds eating eggs to be nutritious and the next month there’s another study advising against eating eggs but with physical exercise it seems fairly conclusive that movement is key whether it’s walking working out at a gym or just remaining active in your home doing chores in 2017 there was the PURE study and PURE is an acronym for prospective urban rural epidemiology study it was written about by the American college of cardiology and the article library found that just 150 minutes of physical activity each week reduces cardiovascular disease and deaths so i mean ultimately you’re still going to die but during the study’s time there was an eminence of prolonged life when compared with a group of people not exercising for at least 150 minutes per week okay so that’s 22 minutes of exercise each day i can do that are you up for that challenge let that be your valentine’s day gift to yourself and your loved ones
As i mentioned we don’t have complete control over all the factors that may result in heart complications my beautiful heart may have benefited from my father’s genetics because i know my mom’s genetics passed on the myotonic dystrophy gene
For this episode i wanted to include a few people i know with heart conditions the first is John, a retired attorney in Oakland, who was diagnosed with congestive heart failure in 2017. I met John on a patient advisory council and Kaiser Permanente for the previous really year i had been declining in terms of my ability to breathe and my ability to walk in distance at all i used to be a backpacker and I could walk you know five or six miles a day with 50 pounds on my back at altitude and that was that was great it was one of my favorite things to do and gradually i began having less and less ability to walk until it got to the point where i really couldn’t walk more than maybe 100 yards or something without having to stop for breath so any one night i was in bed laying on my back and i felt that i didn’t i couldn’t breathe i mean i had to breathe but i didn’t have enough air so my wife suggested i go in which i should have done a long time ago but it just never occurred to me that i had a heart thing because I’ve always been healthy and right away they figured it out that i had what’s called congestive heart failure which means that the heart is not pumping efficiently so what that meant and why i felt an air hunger was that i had a lot of fluid in my lungs the heart wasn’t pushing the fluid throughout the body and my lungs were filled with fluid and that’s why i couldn’t get enough air to feel like i could properly breathe a lot of heart people with congestive heart failure they have to sleep at a recline or even sitting up for that reason so it’s a life-threatening thing it’s it’s it’s not uncommon and uh and they have a whole great big protocol at Kaiser to to deal with it and they have done that and I’ve been treated quite well and they put in a device which regulates my ventricles the lower chambers of the heart to get them to be synchronous which is one of my problems was they were beating a different time and then if I’m at a higher risk to go down with a with a heart attack so it has a defibrillator built into the device that i carry around in my chest with wires that go down into the heart to pick up the electrical information from the heart and put it into the computer and you know and it does its job and one of our advisory council meetings where we both volunteer at Kaiser John mentioned a group he attends mended hearts so i asked him about it you can go on their website it’s a national organization and it was started in Oakland by a cardiologist at Sutter hospital and i haven’t learned all the things that they do but the things that i have learned are they have a meeting once a month they bring in a speaker of some sort or some sort of a presentation sometimes it has to do with hearts and sometimes it has to do with something else like the last one was about you know life enhancement one of these life coach people and so she put on her talk that’s one piece of it the other piece obviously is that it’s a sort of an affinity group where people who have some kind of a heart issue go to meet other people who have some kind of a heart issue so that was actually the reason that i was interested in it was some peer contacts with people the third thing that they do is is they have a visitation program so you’re trained as a visitor you have to learn different things that they want you to know about like you know HIPPA rules and the things that you do and don’t say to a patient and you don’t comment on their treatment or whether that’s good or bad various things like that and so what happens is you sign up and you go like four hours a week and you just show up the nurses on the floor have already asked different people well there’s somebody from men at hearts coming would you like to talk to him or her and they say yes or no so once that’s happened then you show up and the nurse says the lady in room 13 wants to talk to you and that’s what you do is you go in there and just talk so it’s obviously a support kind of a thing but the idea behind it is that if you’re a person who has some heart condition and you’re in the hospital you’re an inpatient it’s really helpful to have somebody who’s also had some kind of a heart condition come and talk to you up here not one of the medical people i think that’s the biggest thing is the visitation
i asked john how this experience has changed his life and what he now does to remain healthy they did a bunch of expensive things for me they did a catheterization where they run a camera on the end of a wire up into your heart and somehow manipulated around the different arteries to see whether there’s any kind of a blockage there was none i didn’t have any disease in my arteries so that was good because it wasn’t like okay well if you start eating this strictly vegan diet and leave out all of these different things which i really really didn’t want to do then you can you know maybe turn this around and i didn’t i wasn’t in that category they have a heart health nurse at Kaiser and she goes over all of the things that you should be doing and gives you a pretty extensive booklet about it you know like no salt and avoid this and that alcohol is one of the big ones no smoking that sort of thing so i now take about six seven pills every day that are for my heart to help it get work better not get better but work better and then when they put that device in my chest they told me that you know in around six months you’re going to start feeling a lot better and that is true i now I’m able to go to yoga twice a week for an hour and a half and today’s my yoga day and then I’ve started recently a personal training program at the y in an ideal case i’ll be able to go to the y three days a week and then i can use the swimming pool there and swim so i can have a lot of activity and i do have a lot of activity that’s what I’m doing right now and you know i just feel better i have more spring in my step people look at me and say there’s more color in my face my wife says well you’re standing up straighter and you don’t have a furrowed brow all the time and so yeah you look a lot better you know and that’s true i feel a whole lot better i don’t feel normal in terms of you know how i felt 10 years ago or but you know i do feel but for the fact that i that i tire easily i would feel pretty normal i don’t have any other issues during the day well thanks to modern medicine huh you bet yeah you bet and modern medicine has really come a long way i remember when i was growing up in the 70s hearing about so many men who died from heart attacks my own father had a heart attack close to 20 years ago he’s still thriving with the help of stents and drugs i also had uncles on my mother’s side of the family who died from sudden heart failure which was the common way people with myotonic dystrophy died which brings me back to the echocardiogram in kg and halter monitor i wear every year to see how my heart is doing in an earlier podcast episode all about adventure Rob who has myotonic dystrophy and his share of heart issues celebrated his recovery from cardiac surgery by climbing mount Everest now his story admit is a bit extreme but there are others in my patient community that are also thriving in spite of cardiac issues Saurabh who lives in San Francisco and works in the financial industry has a pacemaker he practices yoga and meditation to mitigate stress which exacerbates his heart condition and he also sees an ayurvedic practitioner as well as western doctors his treatment also includes an ayurvedic supplement called arjuna which is from the bark of the arjuna tree by the way ironically storm only lives a few miles from me but the phone connection had interference I’m trying to reduce some of the noise yeah so i was diagnosed with myotonic dystrophy in 2009 they pretty much had told me when i got diagnosed the most people who get this diagnosis tend to have heart issues and on the subsequent followers of cardiologists i had electrical conduction problems and they said they would need to follow up with me uh every six months yeah i was diagnosed with a problem called injured flutter initially which is irregular heartbeat and so i had to go and get a surgery done which corrected that but that led to a another form of irregular heart rate heat which is very common with people 60 years and older when i was 30 in that age as for literal population with atrial fibrillation i had to go on meditation because people with natural population tend to be at the highest stroke and i would follow up every six months around the heartbeat at some point time i started getting shot disease and my cardiologist suggested getting a photo monitor done for about two weeks and those two weeks the device that they put on me if i had a disease file which is supposed to press the button and when the results came out and i pressed the button when i was getting those dizzy spells they figured out that my heart was missing at that point time and because of the missing piece they decided to go in for the basement i don’t do a lot specifically for my heart health but i do things which try and be the healthier life overall this would also help my heart i exercise i do yoga and i also try and get some cardio exercises and uh you know i think the problem is the conduction problem so i definitely take that into account and not take my heart rate up too high when i exercise that you know i also meditate to keep stress away because i realize my regular beats were definitely [ __ ] up a lot around stressful situations so i meditate and that helps me manage my stress i did speak to an ayurvedic practitioner she suggested a medicine called arjuna which is supposed to protect your heart health in general use it as a substitute for anything in normal school um it’s easier to have it as a capsule there’s so much more to explore about the heart for example i wanted to include the role love and intimacy may play with heart health but i just didn’t have the time but i invite you to listen to an earlier podcast episode for valentine’s day with Dr. Danielle the link is on the Glass Half Full website and Dr. Sheypuk who holds the title of sexpert for the disabled community introduces the topic of dateable self-esteem the episode is called sassy in a wheelchair and now my valentine’s day gift to you
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
How do you give back? In previous podcast episodes we heard from Amy – a music philanthropist – who sings to raise money for causes she believes in, Chris – a software engineer – who has been involved with a nonprofit organization that helped him as a youth, and Hazel – a retired government employee – who teaches others about service dogs.
Today’s episode features Susan, diagnosed with breast cancer in 1987, who helped the Women’s Cancer Resource Center thrive; first as a volunteer and then as its first executive director.
Welcome to the 5th month of exploring self-care practices. In my first post I laid the groundwork for this challenge and named six categories of self-care. I’m sure we can think of additional areas I’ve missed. Feel free to post a comment with your suggestions below.
Social Support is this month’s focus. Please join us in the Facebook group to dig deeper into what Social Support is, how it can impact your physical and emotional health, and how to get it if you currently feel a void.
Social support is your network. This can be any combination of family and/or friends. Some friends may feel like family. Perhaps you’re like me and come from a small family? I never had siblings, very few cousins, and most of the relatives I grew up with are now long gone. From early on I prized certain friendships as my family.
Your network of people may vary. With some you may feel completely safe. They tend to know much about you. Other members of your network may know you in a limited capacity — such as through an exercise class, a job, volunteering, or religious/spiritual practice — but that’s still important.
If you have a chronic health condition which limits your excursions, many of your friends may be online. It’s possible to get a lot of social support from online connections that grow into friendships. I know this to be true for my patient community. Thankfully, we have an opportunity to meet in person at our annual conference, which enhances the online friendship.
In the past I’ve explored the role of social support in blog posts and podcast episodes. Humans are social animals and we’re wired to connect with others. I hadn’t thought much about the role social support plays in my life until I began my journey as a support group facilitator. As my disease progressed, it’s served somewhat as a litmus test for friendship. It is not uncommon to lose a few friendships throughout life as we grow and change but having a life-threatening condition at a younger age can really wreak havoc with your social life.
Over time I’ve lost many childhood friendships yet I’ve grown closer to people I may not have originally gravitated toward. My heart has opened to more possibilities. My empathy and compassion have increased as well as my social support. These connections help me immensely.
The challenge this month is to think about your social support network. If you’re using the Health Storylines application, there are tools such as Daily Moods, Symptom Tracker, and Daily Planner you can utilize to capture your social support progress. Over time you may see a connection between how you feel emotionally, how your physical symptoms impact your daily life, and what your daily life consists of. How often are you interacting with friends rather than just attending to medical appointments? Are you engaging in group activities that bring you joy?
Another feature of the application is Circle of Support which allows you to add family, friends, and your healthcare team to your support network. Here’s a short video with instructions on how to do this.
Good luck and don’t forget to weigh in on the conversation in our Facebook group.
It’s all about support groups! Listen to several support group facilitators talk about their experiences attending and eventually facilitating a support group. Patient advocacy organizations represented include the Muscular Dystrophy Association, Multiple Sclerosis Foundation, and the FSH Society. Support groups organized through MeetUp cover chronic illness and life transitions.
For more information about launching a support group, check out this recent article in Questmagazine.
Feel free to comment here or on our Facebook page. If you facilitate a support group and want to be part of the conversation, contact us.
In this podcast you’ll hear about my book group, now in its fifth year, and how it helps me with social support and brain health. There are also two guests.
One graphic novel mentioned in this episode is Can’t We Talk about Something More Pleasant? This is an amazing book and recommended reading for anyone taking care of their aging parents.
As I mention in the podcast, if you’d like to join our Goodreads book group please request to join – Glass Half Full.
If you’d like to learn more about starting your own book reading group here are some tips from the American Library Association and a group in Ireland which seems to offer book groups for people with cancer.
How do you give back? In previous podcast episodes we heard from 
It’s all about support groups! Listen to several support group facilitators talk about their experiences attending and eventually facilitating a support group. Patient advocacy organizations represented include the Muscular Dystrophy Association, Multiple Sclerosis Foundation, and the FSH Society. Support groups organized through MeetUp cover chronic illness and life transitions.
In this podcast you’ll hear about my book group, now in its fifth year, and how it helps me with social support and brain health. There are also two guests.