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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What is a Patient Advocate? A patient advocate can be an actual patient with a mental and/or physical health condition, a caregiver for someone with a health condition, or a paid professional advocating on behalf of others with a health condition.

Andrea L. Klein, of Cleveland, Tennessee, has collagen six intermediate congenital muscular dystrophy. She started a Facebook group, Breathe with MD Support Group, for people with a neuromuscular disease who struggle with respiratory health. Recently, she established a nonprofit organization with the same name.

Melissa Talwar, of Pasadena, California, has struggled with fibromyalgia since she was 14 years old. Her experiences with different medications and their alarming side effects catapulted her into focused research on the condition and potential treatments. After volunteering with a patient advocacy organization and then traveling around the U.S. to meet others with fibromyalgia, Melissa also established a nonprofit organization.

Registered Nurse and proud septuagenarian, Barbara Blaser, was the guest speaker at my Northern California myotonic dystrophy support group. With her healthcare background and deep knowledge of medicinal herbs, she spoke about the use of herbal tinctures, edibles, and lotions to help relieve muscle pain, anxiety, insomnia, gastrointestinal problems, and more.

Barbara’s nursing career was predominantly in the mental health field. But at some point in her 60s she had an esophagectomy and due to complications, she developed septicemia. She turned to natural herbal healing to help her pain, anxiety, and GI problems.

For other podcast episodes about medicinal herbs (medical cannabis), check out DIY Cannabis and Medical Cannabis.

Handouts that Barbara provided at the support group meeting are culled from this website.

In 2018, a research study found that at least 36% of Americans were sleeping less than seven hours each night. Inadequate sleep can lead to a number of physical and/or emotional conditions. Some common sleep disorders include insomnia, restless leg syndrome, central or obstructive sleep apnea, and sleepwalking.

Have you perfected your sleep hygiene behaviors to achieve optimal rest and sleep each night? If not, perhaps you’ll want to hear what sleep specialist, Dr. Catherine Darley, has to say.

In addition to Dr. Darley’s advice, as well as the sleep hygiene tips I offer at the end of this podcast episode, check out this blog post on Brain & Life‘s website.

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 and happy new year to you happy new decade i was going to close out 2019 with this episode on sleep hoping you could use some of the tips during the frenzied holidays but i got to frenzied so now you can add this to your new year resolutions heck i’m always looking for new advice or research to help my sleep and rest routines i’ve been scrutinizing my sleep for a while now i’ve made changes to my daily rituals all with the intention of improving my night’s sleep i know sleep issues are common amongst my patient community amongst my friends pretty much across the western world there are many books about improving your sleep i’ve read many of them in the glass half full facebook group i did an informal poll asking people about their sleep there were four options do you have trouble falling asleep staying asleep waking up or is your sleep perfect the way it is well no one responded to the last option the majority of the respondents had trouble staying asleep and that’s usually my problem though here and there i have nights where i just can’t fall asleep at the end of this episode i’ll share some of my sleep hygiene tips with you everyone’s different so i don’t know if they’ll help you but i think i found a great guest for this episode her name is catherine darley dr darley is a naturopathic doctor and these types of doctors are guided by principles that include the healing power of nature they first try treatments that are of a lower force and have fewer side effects like behavioral or dietary treatments this happens before prescribing any pharmaceuticals and that philosophy certainly appeals to me i met dr darley at a day-long class she taught about sleep and mental health it was geared toward therapists counselors and nurses i was incognito she travels around the country teaching people about sleep research you can check out her website the link is in the podcast notes on the glass full website what is a sleep specialist so a sleep specialist is a physician who has not only the training of primary care but has also gotten specialized training in sweden as a student and there is actually an academy of sleep medicine which is part of the american academy of medicine and is it is it like a subset of neurology or is it just completely its own special it’s entirely recognized in its own right sleep medicine is actually a relatively new discipline of medicine compared to some others like cardiology or respiratory medicine the sleep annual sleep meeting has only been happening for about 27 years so it’s a relatively new discipline in light of some of the longer history of other disciplines yeah okay yeah it’s interesting i wonder if it’s a comment on society or where is our sleep has it just become progressively worse yeah i don’t know i think that you know it sleeps interesting to me in um you know in our social standing because even though we all sleep and we all must sleep it seems like it’s been an area that really hasn’t gotten much focus until the last 30 years or so and uh and that’s kind of surprising considering how essential and how basic it is but did we know how important it was you know more than 30 years ago did we just take it for granted i think it is taken for granted although there was certainly research being done since the 1940s if not earlier looking at sleep and one of the first when i first started getting interested in sleep was about 1991 in college and so i was doing literature reviews and reading research papers and at that point we knew that at least animals would die without sufficient sleep so i think that’s a pretty good indication of how essential it is and uh you know early 90s that’s a long time ago and the research i was reading at that point had been you know conducted in the 10 or 15 years prior to that so we’ve certainly known for a long time how essential it is so what did bring you into this field of expertise was it those you know that original that research that sort of lit a fire for you i have always found sleep very just personally interesting to me i’ve always been a pretty good sleeper and i’ve really my parents my household that i grew up in prioritized getting sleep and i’ve prioritized getting enough sleep and so i’m really very aware of what happens to my experience personally when i don’t get enough sleep and so that’s part probably of what motivated me i also when i was a kid i slept walked uh into the neighbor’s house when i was 12 which was a pretty um wow noteworthy experience and i think speak to my interest yeah so oh wait so did that run in your family or was that an anomaly or did you have an issue with sleepwalking my i don’t believe that sleepwalking ran in my family but i was a little bit of a sleepwalker that was the most extreme case or example of my sleepwalking but there were a few other times that i would sleepwalk and the last time was when i was in college about age 21. so how it ended abruptly i mean did you cause it to end abruptly by no i didn’t do any treatment it’s sleepwalking is something that people often outgrow it kind of peaks when people are around seven to twelve years old although certainly adults there can be adults who sleepwalk regularly but i’m not one of them okay that’s good because you you you spend time in a lot of hotels with the work you’re doing i’m sure that would be a little scary yes and for people who are regular sleepwalkers adults it can be distressing but it seems every magazine i pick up it doesn’t matter what kind of magazine there’s something about sleep and i’ve read you know a lot of books on sleep i attended your workshop i mean i’m just so intrigued about it but it seems like perhaps a lot of america is intrigued about it so i was wondering if you could tell me you know some of the statistics about sleep or or lack of sleep that contribute to poor physical sure i can and i want to comment on your your observation about many magazines now will have articles about sleep and that it’s something that’s really captured the interest a huge uptick in the amount of media interest and attention and public interest years ago so i think that’s a really positive sign for us improving our sleep on the other hand there’s some new research that evaluated americans sleep up to 2018 and found that 36 of americans are sleeping seven hours or is not enough sleep for adults most adults seven hours or less so that’s a increase in the percentage percentage of americans not getting adequate sleep and i think about it impacting five domains leslie i think i talked about this briefly in the course that you’ve got your physical health and and our quality of life and our kind of non-diagnosable symptoms to full-blown diagnosable anxiety depression as i think of our physical performance and mental performance so many people in america operate cars right which is a form of is absolutely impaired when you’re sleep deprived then there’s this cognitive performance things from simple memory all the way up to complex problem solving are going to be worse your performance will be worse in those areas if you’re not getting adequate sleep and then the fifth dome appropriately to them which can cause disharmony in your relationships and your social functioning basically i asked dr darley to tell me about other common sleep disorders especially insomnia we definitely want to be treating obstructive sleep apnea and there are other sleep breathing disorders is insomnia and we think this person’s uh insomnia is chronic if they’ve had it for more than three months which you know three months can speed by right and someone’s acute insomnia due to maybe a life event a good insomnia continues after that other categories would be movement disorders things like restless leg syndrome other categories are circadian rhythm disorders and this is a category that’s getting a lot more attention now as we learn how pervasive our circadian systems are throughout our bodies one population that really struggles with circadian issues is shift workers about 20 of americans do shift work where they’re commuting to work or working at times they would naturally be sleeping that can cause a big problem and actually increase cancer risk other two categories of sleep disorders are hypersomnias like narcolepsy and then the last category is parasol it’s where we see those more abnormal sleep features such as the sleep walking sleep eating those types of conditions one is you know roughly how common is sleep apnea and i recently read just a short little blurb that there are different types of sleep apnea can you you know elaborate a little on that so we think it’s somewhere between five and ten percent of men have sleep apnea and slightly lower percentage in women but i’d like to make sure that your listeners know that when women get through menopause and their post-menopausal at that point the rates of um be equivalent to the rates in men and it’s because estrogen has a protective function keeping the airway toned and as women go through menopause and no longer have such high estrogen levels their airway is more easily obstructed like men of their age so that’s something to keep in mind for women as they get older and yes there are another type of apnea is called central sleep apnea and the physiology of obstructive versus central sleep apnea is quite quite different what happens with obstruction of sleep apnea the brain is still telling the body to breathe so you’ll still see the diaphragm the chest rising and falling as the person tries to breathe but they’ve got an obstruction in their upper airway kind of right at the back of the throat usually but in central sleep apnea there’s a problem with the brain respiratory drive and the brain is not giving a signal to breathe and so the diaphragm actually will be still during these apnic pauses and they’re not even trying to bend again it may panel even attempt at respiratory effort the obstruction of sleep apnea is more common in people who have high bmi high body mass index but it’s not exclusively true and i think that we generally think that women tend to be more missed diagnosis of obstructive sleep apnea because they tend to be slimmer or smaller people and so we don’t want to just assume that someone who isn’t overweight doesn’t have obstructive sleep apnea because thin young women could have obstructed sleep apnea also it’s really not only is it the entire body habitus but it’s the shape of the airway so for people who have maybe a small or recessed jaw they’re going to be at increased risk people who may have a deviated septum and can’t breathe through their nose and so therefore they’re breathing through their mouth that increases their risk of obstructive sleep apnea or you know if they have a large tongue or enlarged tonsils making the airway more crowded it’s easier to obstruct you know we did you know year decades ago think of it more as a overweight person’s disease but now we know it’s really mostly impacted by the shape of the airway i asked for a bit of an elaboration on the circadian rhythm and how it impacts us so our circadian rhythm is several many systems in our body that help us stay entrained to the 24 hour a day that we’re seeing on our earth and it’s signaled mostly and it’s uh we’re entrained to the day uh environmental day by the time that we get bright light in the morning so you know sometimes people really focus on getting to bed at the same time and that that is the most important for sleep but i would suggest that actually getting up at the same time each morning and getting bright light as soon as you can helps in train your circadian rhythm and your sleep we want our circadian rhythm to be robust so that we are widely awake during the day and deeply asleep at night one of the things that is really confusing our bodies now in modern lifestyle is the amount of artificial bright light that we have available to us at night both on our electronics on the evening cell phones tablets computers tvs etc and then also just with the ambient lighting that we have in our homes and that is that actually causes a delay in our sleep hormone melatonin and it causes a shorter time of that root melatonin is being released each night so that can impact our sleep so in these uh winter months where you know we have less light and i often wake up here in northern california and i don’t have a clock in in the bedroom but i look and it you know i think oh my god it’s like 5 a.m but it turns out to be 8 a.m and there’s just you know like minimal sun and even you in seattle you know how do you how do you get that hit if it doesn’t exist naturally for some people they may choose to use a light box other people may choose to just get up you know even though it’s dark and maybe cold outside get up at the same time turn the lights on really actively start their day and then as soon as it’s light out a great practice is to go out for a walk 20 minutes of a walk with the bright outside light and for those of your listeners who are in seattle or other places that are known for being overcast and cloudy even on an overcast morning it’s going to be brighter outside than almost any indoor setting is going to be and that amount of light will really help clue to your body its day and switch into daytime physiology awake physiology and then i think the other corollary is to purposely be turning down the lights in your home and not only turning down the brightness of them but also switch to more historical types of light waveforms that people would historically be exposed to at in the evening which would be your yellow and think uh sunset or fire light or candlelight those kinds of hues of lighting so what i recommend is people set an alarm on their phone or something for an hour hour and a half before their bedtime and at that time they turn off all the lights in their home except for maybe one light which they’ve put kind of a yellowish hued relatively dim bulb in so they can still do their recreational wind down activities you know snuggling and talking with the family or reading a book or doing some gentle yoga or listening to a podcast or something but they’re not getting bright light they’re not getting blue light i was curious if jack and darling could give us more suggestions on how to improve our sleep hygiene nutrition and exercise have gotten a lot more media attention over the last 60 years than sleep has well if you just had the exercise and nutrition piece that’s not very stable is it you’ve got to have the sleep piece and then i think of some other some other pieces of a healthy foundation being positive social relationships loved ones that we can count on and that we and who have esteem for us and we have esteem for them another one would be joy having joy in our lives and then the sixth connection to nature and there’s lots of research coming out now about how nature improves our health and i know when i’ve been out nature or i exercise on a day my sleep my ability to sleep that evening is easier is enhanced so sleep hygiene is basically creating a lifestyle that promotes healthy sleep and a strong circadian rhythm uh and so there’s many many components of this if i was just going to choose out the top five components of sleep hygiene i would say i mentioned bright light in the morning for 20 minutes ideally in the first hour or two of getting up sooner the better after getting up the second one would be like i said earlier avoiding the blue light and the artificial light at night and replicating as best you can naturalistic historical lighting conditions which would be dim yellowish reddish spectrum of light would be deciding to give yourself enough hours of sleep because insufficient sleep syndrome is definitely the most common sleep problem that i see people having and it contributes to so many domains that can be negatively impacted the physical health the physical performance measures so the way that i think about this which i’m not sure that other people do is that if you are an eight hour sleeper and that’s the ideal amount of sleep for you that means you can have a 16-hour day and if you’re trying to have 17 or 18 hours of activity each day you’re not going to be getting the sleep you need and therefore you’re going to be having some domain and i encourage people to think about the question would you rather have a long day or would you like to have a good healthy day that’s shorter because you’re getting enough sleep and i’m not sure that people are thinking about it quite as explicitly or quite in those terms so that would be the third thing get enough sleep the fifth thing is your sleep hours to rest and sleep and don’t take your daytime rolls and responsibilities to bed with you i think that idea that we’ve probably all heard of leave a bet pad of paper and pencil at your bedside so if you have a good idea in the night you can jot it down i think actually that’s a horrible idea because it trains you to be on all the time instead of practicing some limit setting that it’s okay and it’s valid for me to stop taking care of my responsibilities and just rest and sleep and recover and be recharged for the next day when i can pick those up again so those are my recommendations and then the fifth one would be about probably exercise and just giving yourself enough wind down time between your active day or eating or exercise and turning lights out some people transition more quickly others need a little bit more time but you know kind of evaluating that for yourself and determining how much time you need to wind down so that you’re ready to sleep once you’re in bed regarding insomnia does this refer to something more than having difficulty falling asleep i asked dr darley about waking up in the middle of the night and not being able to fall back to sleep depending on what their problem is if they are aware of waking up gas with a gasp in the middle of the night or if a bed partner or someone sharing the room says that they’re snoring loudly or pausing in their breathing at night they definitely should be evaluated for a sleep breathing disorder if they’re having difficulty with intimates at the beginning of the night to fall asleep being awake in the middle of the night or waking up too early not refreshed not ready for their days insomnia can manifest at all those different points in the night that is something that should be addressed we know that the more episodes of acute insomnia that somebody has the greater their chances of having insomnia in the future so that would be important and then if they have restless leg syndrome where they’re feeling like they just have to move their legs in the evening and that movement uh or that sensation subsides when they move that would be an indication to go see a sleep specialist such high percentage of americans are not getting adequate sleep i would really encourage people to do an optimal sleep plan for two weeks where they’re really prioritizing getting the amount of sleep that they need and just then noticing how does it impact their health and their sense of well-being is it worth it to get more sleep does it really make a difference and how can you do that that’s what i would recommend and i think i ended with that leslie in our sleep class i’m wondering if you had the chance to do it and if so how did that work for you oh i know yeah the more i sleep the better i feel years ago i did my silver presentation i was doing for my patient in my disease community and i had you know impairment like maslow’s hierarchy of needs but it was based on my self-care routine and the foundation is sleep and getting a good night’s sleep is critical for my next day and a lot of what i do during the day is to lead to that optimal sleep experience so it’s based on exercise and winding down stimuli like lights and sounds i take a hot bath every night the only thing i do which is probably contrary to uh what sleep experts suggest is i i watch a little tv in bed i mean there’s you know there’s these recommendations that we make that are based on physiology but every person is an individual and has different success abilities i mean as we know we we’ve all got probably friends who can drink more and and handle it fine you know there’s you know we can give examples in any area of health where we see individual variability and so i encourage people to follow the rules and then if they find that they can break them in one area more power to you dr darley has certainly provided us with food for thought one thing i’ll definitely start doing is getting outside in the morning even if it’s overcast not mentioned in this podcast but we did talk about it during our conversation is starting a sleep journal or diary there are also online versions or apps to help with this dr darley believes it’s good to document and look for trends rather than relying on your subjectivity and another way to track sleep and include relevant data is to use a wearable device to sleep this wouldn’t be comfortable for me but my partner does it and can check to see how much sleep she got the previous night and at what time she may have awakened during the night i remember from my time receiving regular acupuncture treatments that when you wake up in the middle of the night i can point to issues related to different body organs this is all part of traditional chinese medicine so you might if you find that you’re waking up at a particular time every night you might want to consult an acupuncturist anyhow as i mentioned in my conversation with dr darley i am intentional during my day to create a fertile ground for restful sleep i exercise earlier in the day i eat frequent small meals with my last meal several hours before i’m gonna go to bed i do wind down and i limit stimuli such as lights and noise and i take a hot bath using essential oils like lavender which is known to have a relaxing effect and i also take a one to one thc a cbd tincture sublingually under my tongue about an hour before i anticipate falling asleep and this routine usually works but nothing is foolproof anxiety can still rear its ugly head and keep me awake or arouse me from asleep it’s all a work in progress so rest peacefully my friends and when you wake up well rested the next day turn one of your friends onto this podcast thanks for listening

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 classful.org

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