Glass Half Full with Leslie Krongold, Ed.D.

Tag: multiple sclerosis

  • Starting a Contemplative Practice

    Starting a Contemplative Practice

    A contemplative practice includes meditation, prayer, mindfulness, yoga, tai chi or qigong, journaling or anything that helps ground you. Some people use affirmations while others use music to help them ease into a more tranquil state.

    Shameka Andrews (pictured above) shares her meditation experience with individuals and organizations and even at a local farmer’s market in upstate New York. Positive affirmations and mirror work have helped Shameka move through feelings of depression and isolation associated with having a physical disability,

    Gareth Walker talks about finding mindfulness meditation and how it’s helped him cope with Multiple Sclerosis.

    Mary Holt, RN, went through a mindfulness meditation training that changed how she works with patients and families dealing with neurological conditions like muscular dystrophy and Parkinson’s disease.

    Melissa Felsenstein used sound meditation to help her move through depression and anxiety. Here’s a sample of Melissa’s work.

    Molly Lannon Kenny, a yoga therapist and graduate of a program in Christian mysticism, discusses similarities between prayer and meditation.

    Author Toni Bernhard offers her Buddhist perspective on meditation and how it has helped her deal with a chronic illness.

  • Hug A Tree & Live Longer

    Hug A Tree & Live Longer

    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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  • Hear Ye, Hear Ye: People with Multiple Sclerosis, Spinal Cord Injury, Parkinson’s or Neuromuscular Disease

    Hear Ye, Hear Ye: People with Multiple Sclerosis, Spinal Cord Injury, Parkinson’s or Neuromuscular Disease

    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

  • NeuroJewology: A Tale of Multiple Sclerosis, Parkinson’s & Muscular Dystrophy in South Florida

    NeuroJewology: A Tale of Multiple Sclerosis, Parkinson’s & Muscular Dystrophy in South Florida

    Two friends from grade school share their stories of a diagnosis of a neurological condition. Marc has Multiple Sclerosis and Steve has Parkinson’s disease. I have a form of muscular dystrophy called myotonic dystrophy. It’s purely coincidental we all went to the same synagogue; there is no correlation between being Jewish and having a neurological condition.

    Both Marc and Steve maintain positive attitudes. Marc has educated himself thoroughly about MS. Steve has tried different exercise programs customized for people with Parkinson’s and now facilitates a support group.

    Steve has a travel planning business; you can visit his 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 welcome to the next to last episode for 2019. i’m planning to get the last episode out in just a few days before i head out on my holiday road trip

    so this episode has an unusual title neuro zoology which i will explain to you my two guests are both guys i knew from high school actually i think we met in middle school in south florida the first one is mark and the second guest is steve in the in the past few years each of them told me about their neurological conditions i think it was probably through facebook and mark has multiple sclerosis and steve has parkinson’s disease and each one asked me to maintain their privacy until recently they knew i was interviewing them for this podcast episode i i wasn’t spying on them i promise so we all grew up in south florida went to the same middle and senior high schools and developed neurological conditions in our adulthood and we actually all went to the same synagogue at first i was going to call the episode neuro jews sounds like you know super heroes and then steve suggested neuro duology and i kind of like the sound of that so there was absolutely no known correlation between being jewish and having a neurological condition you know that right okay we’re we’re just having a little pun fun my first conversation is with mark who still lives in florida and steve now lives in new york anyhow so mark no longer works full time i believe he and his wife have three children though i think they’re more like teenagers and young adults i haven’t i haven’t seen mark in many many years but our high school reunion is next year so i hope to see him i asked mark how he discovered he has ms so i woke up one morning i woke up one morning and the part below my knees and the part uh this the part below my elbows were numb and the numbness was like you know if you sort of lean on a place too long and your hand arm goes to sleep and you have to shake it out and or you lean on something like you sit on your leg and it goes numb and you sort of like have to shake it out to get going well i woke up that way and i was like that’s kind of weird and it didn’t go away and so i think it might have been a friday on monday i went in to see a neurologist that a neurologist said there are a couple of ways to confirm whether you have ms ms is can be confirmed by basically doing taking fluids out of your spine and doing a test or like the name sounds you have more than one episode on more than one date so he did an mri i had active lesions at the time a demolition of uh the tissue and it looked like i had had a couple of points that in the past had been uh part of it he said it’s probably ms but until we see another active lesion or a next episode we can’t absolutely say ms and he says at this time we’re gonna just go ahead and not put you on the medication well uh i’m gonna say within a month i had another lesion did another mri and uh they confirmed that i had ms so it really just started with my below my knees and below my arms not being able to feel see you were scared no it scared the wrong word for it i was concerned something else was going on something was going on and i’m reasonable and when i always tell people just act as a reasonable person will and if a reasonable progression is to go see a doctor about what’s going on that’s what you do and i talked over with my wife and she’s like yeah i think the right doctor is a neurologist and that’s where i went so i mean if you wake up one morning and you can’t feel your arms you say well you know maybe i’ll wait a day maybe whatever i did or you know pitch nerve or whatever it’ll go away now in the ms world uh if something is happening for more than two days on the third day they want you to seek uh attention usually that’s in the form of depending on your doctor a steroid drip and an ib to stop or lessen the impact of the demonetization so i luckily had gone and had sought early treatment because it did stop that in its tracks well floated enough so that there was no more damage and then um it’s all about how much of the feeling returns when the episode ends so that’s how it started uh and that was 2006. so had you ever had you known uh family or friends with ms before your diagnosis no i was the first person i knew that had ms i don’t even remember hearing rumors about other people but of course once you have it you start to hear more and more but no i was the first person i knew who had it i remember thinking that you know this is 2006. so i remember thinking that i don’t want to make things worse and so i struggled a little bit with whether or not since it happened while i was sleeping whether or not the way i was sleeping was causing anything of course i was naive at the time and so other than trying to do the right things i didn’t really freak out to be honest with you what i all i did was i went to the websites and i read as much as i could read about all the medications read about all the treatments read about what a diagnosis is um i got myself educated and i’m way more educated than most people on it right now and in that first month i would say i read hundreds of pages on ms like literally hundreds well huh did you uh when did you decide to tell your children well it’s the weird thing is i tell my kids everything i mean they know absolutely everything i’m pretty sure i told them that first year but not just right away i’m going to say i probably told them by the end of 2006 but i don’t think i did exactly right away um no i take that back we had a trip planned in august and this happened in early early june and i remember telling them in august and saying to them that nobody else knows because we’re going to a family wedding nice and talk to them and say hey this is private don’t say anything about you know anything that’s going on with regards to that and so i talked to them about it then so i’m gonna say i waited probably just two months so i’m not sure when you and i connected and and you told me i feel like it was maybe three or so years ago but maybe it was more or maybe it was just about three years ago but i know that you asked me not yeah you asked me not to tell anyone or i i didn’t of course i wondered like what’s changed for you since then because obviously you you’re doing this podcast you know uh interview so something changed i’m not sure you know that life isn’t just about an evolution of growth and change and changing your perceptions on things and i think one of the things that’s changed for me in that time frame is i have way different outlooks on the way you should live your life the way that you should go forward in other people and i think that ultimately i decided that i wasn’t going to hide it but i wasn’t going to flaunt it and so i thought you know what you asked me once i’ll circle back to it it had been in the back of my mind anyway for when you first asked i was just hesitant at the time because uh quite honestly i figured that we probably know 300 of the same people you know something some absurd amount initial hesitancy and i think i’ve decided along the way that there’s probably enough people who do know that it’s probably not that much of an issue anymore to come out but i think the reason i overall never said things to people and i still don’t prime at a to a large extent leslie is because and maybe you can be reflective of this that the first thing out of people’s mouths are how you feeling i i i don’t live my life harping on how are you feeling answers um i’d rather just be perceived as you know uh yeah just being able to you know have a normal conversation instead of always harping back to you know a disease or or a symptom or something that’s pulling i just don’t i just don’t like harping on stuff like that i i tend to gravitate towards positive things and stay away from negative things um and it i just don’t feel comfortable talking about myself that way a lot of times so that’s probably one of the reasons that i was hesitant anyway all along have you been able to connect with others with ms perhaps younger folks or people you know newly diagnosed i guess it goes without saying in a way having read all about the stuff i’m very well educated on it and being very well educated on it sometimes when you talk with people who aren’t ms patients they don’t quite understand they have a perception of that i should be in a wheelchair that i shouldn’t be walking that i shouldn’t be doing this and everything like that and i’ll give you a little side story on that and then there’s the other side is that uh the people who are newly they just want to get educated so i tended not to really be in a lot of support groups or anything like that i’d let my neurologist know if he had some briefly that some of the people have expectations of what your physical symptoms and restraint should be and um i was carpooling with a another mother or kids to school last year and i said hey i’ve got to do an mri uh and something in like march or something and she said no problem i’ll get them at the end of the day today and then something in passing i mentioned like yeah just you know i had headaches today and stuff like that it’s sometimes it’s a side effect you know that you get and so she then heard me it’s like oh yeah that’s right you have ms her she decided that it was no longer safe for her daughter to be driven by me around you know i so you can’t change people’s perceptions sometimes because it never would get resolved i gave her every logical explanation i could but you know she was trying to say well what does it feel like early on i said you know i once heard somebody in adt say what their neuropathy felt like and i said it’s very similar the pains are very similar the issues are very similar but i don’t have neuropathy i have ms i don’t know in her head where it got all jumbled i don’t know how much it was a discussion at home with her husband but it just fell apart when she learned i had ms and i think that’s kind of ridiculous to be honest with you but everybody has their own neuroses let’s put it or bring their own issues to the table but i sort of think that’s ridiculous because people are people you know i asked mark if he’s tried any alternative modalities to relieve some of his symptoms early on i had trouble sleeping i don’t know whether or not because the numbness you know there’s a there’s a period of uh self-awareness and when you quiet down at night and it’s just you thinking and you’re not moving you can sort of feel that there is numbness and it doesn’t feel right you can you can sort of hyper focus and i could fall asleep with my arm under the pillow and it would get 10 times worse than being numb and uh those types of things and you just know you’re not yourself so first thing i did is i reached for um acupuncture and i went to acupuncture and i told myself so that worked for me my wife was like you should go to a chiropractor too i was like what for so i went to a chiropractor and he’s like you know if you give me 10 weeks i might be able to open up some of the uh things that are i don’t even know how he put it but it he made it sound like i’ll be able to open up the pathways of your nervous system by allowing your uh structure to be realigned correctly i was like wait i don’t think you quite understand the nerves aren’t there to be allowed to breathe so but i did give them a little bit of a try and of course it did nothing so what kind of advice if any do you have for someone newly diagnosed with ms well i think the first thing you do is you get yourself educated um obviously there are uh different what the medications are what the choices are and to find yourself a neurologist who will spend the time necessary to answer your questions instead of just push you out of the office because he has an appointment in five minutes so that would be my overnight you have time to learn everything you have time to make decisions just getting a new diagnosis doesn’t mean oh my god i have to change tomorrow or i have to do something in the next two weeks or this you don’t you just proceed as a reasonable person word if they tell you that you need to get an mri to go ahead and confirm what’s going on you schedule it you do it

    when you look at somebody who has ms and given that i just said that the attack could be in so many different places that you have to sort of realize that there is a broader spectrum within the disease that doesn’t mean that somebody is necessarily going to live the stereotypical worst case lifestyle or is going to die and i think that having that sympathy towards other people because you’re gonna have to uh learn that others will have their own preconceived notion towards you will give you a little bit of a better aspect of what’s going on the other thing i’d almost pinpoint every lesion i’ve had and say man that was a during a period of time where i just was not under a lot of stress and so to me i think that if i was going to give advice keep things around you that are positive don’t surround yourself with negative reduce your stress that i’m talking to you today and that is something that helps you feel better about yourself and what you’re doing a midst of everything else that’s going on and i think that’s always a good thing when you can feel good about some other things that you do for your you know to for other people and you can feel good about yourself like yeah i’m fine man no worries i’m good and so i just think that that overall surrounding yourself with that positivity and that experience leads to better health and i don’t know i mean that might sound crazy to a lot of people but i just i just feel him and trying to stay positive and my kids have noticed the change as well in the last couple of years and um they’re like work as well anymore to just lose your temper but uh the second reason is because what good’s it gonna do right so steve as i mentioned lives in new york in fact i saw him just about two years ago on a trip to new york we had lunch and caught up it had been many years since we’d seen each other maybe since we graduated high school anyhow his work for most of his career was computer related and i know a few years ago his organization downsized and he decided to start a venture that he’s long been interested in travel planning so there’s a link to his website in the podcast notes so i know a few years ago uh you know you sort of personally came out to me as having been diagnosed and you didn’t want to talk about it but then i saw you a couple years ago and it seemed like you were talking more about it where are you at now with you know discussing your condition

    um i don’t talk about it with too many people because some of the reactions i get to well well they don’t want to really seem like they’re just like the way they respond like oh that’s too bad and kind of blow it off they don’t realize that they could they could really be offensive but that happens a lot and i you know i’ll tell i’ll tell some closer people to me and you know i know they’re they’re they actually have feelings and care about each other so you know the the acquaintances i have on facebook they don’t they don’t really need need to know about medical conditions of each other can you tell me what led to your diagnosis of parkinson’s you know when did you have your first symptoms were you diagnosed with any other conditions and then you know gradually found out that wasn’t correct tell me tell me about that journey may not be in chronic chronological order i got diagnosed in 2012 with parkinson’s

    my wife she sent me to my primary care doctor said you got to go to he goes no i’m usually wrong 100 chance it might be parkinson’s disease and you know i i know parkinson’s diseases i think michael j fox says i don’t know much more than that and i’m like really he goes yeah but i’m usually wrong about these things so i went to a neurologist a neurologist he tested me with a bunch of tests which don’t really tell you if you have parkinson’s or not but it rules out other illnesses but the true test is when you use a levodopa carbidopa if you react to that then that’s like yeah that’s then you have parkinson’s because it’s the treatment for it so i went back to my primary doctor and i said yeah did you you know did you really think it was 100 chance because no i knew exactly what it was i just want to freak you out i have a pretty good primary doctor it’s like i hear stories that people get a real run around like you have this illness you have bad illness and it’s like it could take years before they come up with parkinson’s and you know while they’re suffering and taking the wrong medications yeah what led up to that was i had non-motor symptoms there was a mood changes

    obsessing over different things and this was going this was going on over several years before 2012. so you know this you can go year and like not get diagnosed for years like that’s weird i don’t you know you don’t really pay much attention it’s like i don’t smell things anymore i didn’t realize that

    friends at work like my pals at work noticed there were some weird things going on but they didn’t really say anything because after i got on medication my boss made a comment hey steve’s back and i thought that was that was very weird and i you know i was talking to my wife about that and like it’s weird right my boss said steve’s back and she kind of she got it right away like you know the pers person with my my personality changes isn’t the person that she met and then all of a sudden he’s back like after after one day of being on the medication there’s also other symptoms like sleep problems i was acting out dreams like waving my own uh interesting one i lost like 10 10 15 20 pounds real fast and the guy running the department he’s like you lost a lot of weight steve and he pauses and he’s like i hope it’s all for good reasons it’s like he kind of got it too there was something weird going on but he didn’t say anything did you seek out any support groups because i know parkinson’s has a lot of different programs you know all the movement classes tell me some of the things you’ve tried and what has helped and what you you know found no use or or help from i went to several support groups and exercise programs when i mentioned the lack of initial lack of of initiative and apathy that’s that’s really a strong part of the young onset parkinson’s disease groups i’d go to the meetings and it was just me and the organizer then a month later i go to the meeting and me and the organizer and so so i’m like what’s what’s with the city of millions of people don’t they they must have they must have some people with young onset parkinson’s that want to go to a group or maybe they just don’t want to hear about it i’ve got an email address we all exchanged email addresses over a couple of months so i had a list of email addresses and i was like all of a sudden i feel like i’m the organizer of the group so i’m emailing people and i’m helping people out because i’ve been been diagnosed since 2012 this people that just got diagnosed a year a year and a half ago maybe just even a couple of months ago and they’re scared and they were like what’s going on i want to hear from somebody that’s not 90 years old you know what’s going on with you so i’m i’m actually unofficially running the young onset parkinson’s group for new york city and i’m looking for yeah and i’m looking for a new location to meet so i’m looking for like a meeting space up this way and i’m trying to get creative and not like go into a hospital environment so i’m looking for i’m looking for a meeting space at one of the museums i think that’d be really cool

    and one guy showed up and me but we had conversation he was he was asking a lot of questions and i was i was happy to share my experiences and it was it was a great support group meeting it was two people it doesn’t doesn’t doesn’t take 30 people in a room to make a good meeting you know it’s like it’s not not the nothing asses in the seat it’s the quality of the people coming in so there is another guy he keeps emailing how many people were there how many people were there and i’m like you know it’s like what is there a cover charge ten dollars a person like it’s it’s all in the quality of your conversation

    i was doing a weekly yoga class and i found one that was charging just like a free class in the community around here i was i tried i tried boxing dude it’s not that’s not a contact boxing like you put the gloves on you get a bag and that that really aggravated my my elbows so i don’t know what i was doing wrong but i’m willing to try that one again i did a or i’m still doing it there’s a dance class at juilliard dance class dance dance for parkinson’s is the group and they they hosted the free class and you just got to get evaluated and you go to the class every every week you you do a little you don’t do much dancing it’s like that’s like an extreme thing but you you move around you’re stretching out your muscles and getting out of your house and most most of all i do walking i could walk three four or five miles a day and it’s only because i’m getting lost and i’m looking for no that’s not true i’m just kidding no it’s like you know i’m fortunate to be in new york city where it’s a walking city and i live and live towards the north end of town and i’ll just i could walk easily two to three miles and just keep going down the streets or maybe if it’s a nice day i’ll walk through central park but i i like the city city walking better than the park walking park i like to sit in

    so what kind of advice would you offer someone newly diagnosed don’t freak out whatever people tell you may or may not be true for you uh every every single person with parkinson’s has a different type of different type of progression and their symptoms are different some people shake like their hands are shaky they can’t pick up a glass of water without spilling it some some people don’t have any shaking and some people have internal shaking that’s that’s my main advice i went to a support group right after i got diagnosed and they had a guest speaker come in and she was like do any of you have dissed this and this and i was looking around and like nobody really responds well you’ll get it she was like the wicked witch of parkinson’s yeah she she ran a group in another city and she was just speaking in in our group especially like you know if you you don’t have anything nice to say to a group of people that just got diagnosed just don’t don’t say it yeah just shut up

    i hope you’ve enjoyed meeting mark and steve i don’t believe they’re in touch with each other but i found it very interesting that their perspectives are similar if you have a comment about the episode i hope you’ll visit the glascefl website and share your comment below the podcast notes so stay tuned in a few days for the final podcast episode of the year and it’s all about

    sleep 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.online

  • I Am Not A Pretzel: Accessible Yoga

    I Am Not A Pretzel: Accessible Yoga

    Any style of yoga can be made accessible and provide healing for someone with a physical challenge, someone experiencing anxiety and/or depression, or someone with a larger body.

    Three yoga teachers – skilled in making yoga more accessible – share their stories. Rose Kress, of LifeForce Yoga, experienced relief from years of anxiety and chronic pain when she began a yoga practice. Her teachings focus on mood management incorporating both yoga nidra and the use of mudras, or hand gestures.

    Erica Chaney, of Big Bliss Yoga, began her yoga journey in a restorative class where she felt like she learned to breathe more deeply. Today Erica’s teaching focuses on making yoga more accessible to people with larger bodies.

    Clarissa Hidalgo was first introduced to yoga by a fellow patient at a Multiple Sclerosis clinic at UCSF. Now Clarissa primarily works with private clients with a range of health conditions, i.e. fibromyalgia, degenerative disc disease, arthritis, cerebral palsy, as well as MS.

    To learn more about accessible yoga, check out this earlier podcast episode and the organization’s website.

  • The Heat is On! How Weather Affects Our Health

    Hot weather affects the health of humans and animals
    Basset Hound with ears flapping in front of a fan

    High temperatures can exacerbate symptoms for someone with a chronic health condition. The best way to cope may be to seek refuge in an air-conditioned environment. If that proves to be difficult, you may learn about a few tools and resources from patient advocates, You’ll meet Kate Mitchell, from Boston, who has Rheumatoid Arthritis and POTS (Postural orthostatic tachycardia syndrome), Danny van Leeuwen, also in Boston, who has Multiple Sclerosis, and Brook McCall, in Portland, Oregon, who has a spinal cord injury. They share their experiences with weather — hot, cold, ice, snow, and pressure changes.

    7 Hot Tips to Beat the Heat

    1. Pre-cooling

    Check out the National Multiple Sclerosis Society website for information about pre-cooling techniques.

    2. Hydration

    Water’s great but so are some other beverages. The Ayurvedic tradition focuses on herbs, spices, and other plant-based remedies to cool you down. Check this magazine article for a few recipes. If you’re intrigued by Ayurveda, have you listened to last year’s podcast episode?

    3. Diet Modification

    Consider eating smaller, lighter meals. Here’s a list of hydrating foods.

    4. Clothing

    Check out this issue of the UC-Berkeley Wellness Newsletter for tips on appropriate clothing for hot weather.

    5. AC over Fans

    This is discussed in the link above.

    6. Yoga Poses

    Curl your tongue and breathe. To learn more about this cooling yoga pranayama and other cooling asanas, visit this webpage.

    7. Meditation

    Listen to this guided meditation to help you cool down…once you’re safe inside or in a shaded area.

    Additional resources: From Brain & Health magazine.

  • Support Groups: Attend, Launch, or Facilitate

    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 Quest magazine.

    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.

  • Passion: Motivation to Move through the Bad Stuff and Experience Joy

    Recently I attended an annual patient conference and had a conversation which served as a catalyst for a couple of blog posts and this podcast episode. What advice do you give someone experiencing apathy and a lack of motivation? How do you cultivate a passion which can make it easier to move through the challenges of living with a chronic health condition so you can still experience joy?

    There are no easy answers.

    Featured in this episode are three people I know who have shared their passion with me. Mindy brings her love of dance to our myotonic dystrophy community.

     

    Hazel shares her knowledge and experience with service dogs to those with multiple sclerosis as well as other chronic health conditions. And James helps his co-workers and friends experience the Totality — and other celestial happenings.

    To learn more about Mihaly Csikszentmihalyi and the flow concept, here’s a TED Talk, and the books I read: Flow: The Psychology of Optimal Experience  and Creativity: Flow and the Psychology of Discovery and Invention.

  • Multiple Sclerosis & Mindfulness Meditation

    Multiple Sclerosis & Mindfulness Meditation

    Gareth Walker, in northern England, works as a police officer and has progressive multiple sclerosis. His daily practice of mindfulness meditation enables him to navigate the physical and emotional difficulties of living with a chronic health condition.

    Walker was first introduced to a mindfulness practice when reading Wherever You Go, There You Are: Mindfulness Meditation in Everyday Life by Jon Kabat-Zinn. Walker is featured in Jo Marchant’s 2016 best-selling book, Cure: a journey into the science of mind over body.

    To learn more about Gareth Walker and his practice, visit his website, Everyday Mindfulness.

    Transcription

    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 welcome to today’s podcast last year i read a book called cure a journey into the science of mind over body it’s written by a woman named joe martin chant who lives in london has a phd in genetics and microbiology and works as a science journalist in the book she explores several healing modalities that are more alternative than western medical treatment and pharmaceuticals each chapter is a dive into an area such as hypnotism virtual reality aromatherapy or mindfulness meditation i love the book the author approaches these subjects skeptically and seems to walk away perhaps not a convert but somewhat enlightened my guest for today’s podcast episode is someone she interviewed for the book but before i introduce our conversation i want to tell you my small world story associated with this book the last couple of years each time i visited my neurologist at stanford university i noticed his office was opposite the center for integrative medicine i asked my doctor about the center and he knew nothing about their work so i went inside their offices to investigate apparently most of their work is with cancer patients i talked with the receptionist about my rare disease how i experienced chronic muscle pain and after securing a referral for my neurologist i could get an appointment with one of the doctors i think there was a three or four month wait when we finally did meet there was a discussion about my condition and what they offer which was mostly acupuncture since it takes an hour for me to get to stanford and there are good acupuncture clinics in my community i declined but the doctor did suggest i make an appointment with another doctor at the center who’s not theirs regularly and specializes in hypnosis so i did and the wait was a few more months now i know nothing about hypnosis other than what we see depicted in popular culture i was intrigued and as many of you probably share i’m always open to non-invasive ways to cope with pain and discomfort well the appointment was last year and it was during the time i was reading the cure book and i bet you thought i was going off on a wild tangent right well it turns out that the doctor was waiting to see daniel spiegel he’s in the book and he’s a world renowned expert on hypnosis i didn’t know that i had the appointment and i was reading the chapter just about a week before the appointment and i you know discovered that so i was really psyched but unfortunately when i met with him we went through these little uh tests and everything and it just so happens i’m part of the i don’t know about 10 of people that can’t be hypnotized i don’t know if that’s a good thing or a bad thing anyhow now back to this podcast episode gareth walker lives in northern england and has multiple sclerosis joe marchand the book’s author contacted the multiple sclerosis society in england and asked if they knew of anyone practicing meditation and they all knew of gareth and now you will too when were you diagnosed with ms and how did that happen i was diagnosed about

    eight years ago now

    it happened um i got blurry vision in my left eye um so obviously went to the doctors and several tests were done the first they thought it was conjunctivitis but the drops they gave me didn’t clear it up the opticians couldn’t find anything wrong so eventually i went for an mri scan which is when um the bomb went off really i was told by a neurologist that there was damage to my optic nerve and that could be a precursor to ms it may not be go away and live your life and and hope that you don’t have ms but unfortunately i do and um about six years ago the symptoms started to accumulate and they’ve been going on since then and it’s pretty certain now that i have um progressive ms and i don’t really have relapses the condition just keeps getting worse to the point where i’m in a wheelchair now oh i didn’t realize that so and you’re able to to still uh work but in a different capacity you’re a police officer that’s correct i’m a police officer and luckily it’s a big organization i work for and a desk job has been found i’m still doing kind of detective work and and still researching things but it’s all computer-based now so what were some of the first ways that you tried to mitigate or alleviate symptoms did you try certain part you know drugs that were helpful i kind of got myself in a bit of a um

    depression’s not the right word but i was in a bit of a thug and um i was really down about the diagnosis and i remember my mum gave me a a book the book wasn’t really relevant it was kind of a self-help book and it and it just kind of got me thinking come on you know that this is life this is what’s happened to you and you’ve gotta you’ve gotta start doing something about it and i i went away and did research and things like that and eventually i came across um a website um from an australian doctor who’d got ms and he recommended a series of lifestyle changes um to give yourself the best possible chance with the disease that the lifestyle changes were diet exercise and one of one of the aspects of the regime was meditation but i had no clue what meditation was about and so suddenly gave me a recommendation somewhere for a book the book is called wherever you go there you are by jonkerbat zinn and so i picked up this book uh and it just so happens that junk about zinn is the um pioneer of secular mindfulness in the west he i think he’s a buddhist and he’d stood it he’d studied it from a buddhist view and but but realized that there was a lot in this that could be brought to people um in in the west and so he stripped the religion out of it and um started teaching uh mindfulness classes mindfulness based stress reduction uh this book rang very true with me um and i started meditating and and that was where it all started

    meditation is it’s so many things and and often people are confused between well what is mindfulness and what is meditation and they try and they feel like they’re not doing it right did you go through that sort of struggle at the beginning yeah and i think everybody who starts meditating does you know what what happens if i get an itch while i’m meditating what am i supposed to do uh i i’m i’m a bad meditator and that i can’t keep my mind still for a second you know everybody has these kind of thoughts but eventually over time the the benefits start to bed in and mindfulness itself it it’s become kind of a a way of life meditation is the it just brings about more mindfulness um you can do mindfulness the person walking down the street can do mindfulness we can all do mindfulness if you if you’re sat at the beach and there’s a particularly beautiful sunset you’re gonna be looking at the sunset you’re being mindful right there but the problem is sustaining mindfulness do you drive leslie i do not not very often but i do and i i don’t know if you’ve ever been on a journey and you you pull onto your drive and then you think i don’t remember anything about that journey at all right right and that’s because your mind was elsewhere you are on autopilot thinking about the argument you had with your partner the day before are you thinking about the meeting next week that you’re really worried about and the mind is such a restless tumultuous place uh it it it’s always wanting to go here there and everywhere and it’s easy to get sucked into the stories that it it generates for meditation helps you see the mind for for what it is and helps you bring yourself back from these storylines and the effect is life-changing so i understand you started with a five-minute daily practice is that correct uh yeah that’s great so would you did you create a place an actual location at your home or your work or were you able to take the five minutes in any sort of setting at first um i used to try and get myself to a quiet place in the house where i wouldn’t be disturbed now it’s just anywhere and everywhere and do you have the ability to do it if you’re in a room with other people

    yeah and you can be um you can be mindful at any moment in your life you in in a room full of people you just listen to the sounds around you listen to the people that are talking to you and listen to the distractions there was a um a really good meditation one day out fairly early on in my practice and i was meditating and um my son was very very young at the time uh burst into the bedroom and i and at first i started to become irritated oh you’ve you’ve interrupted my meditation and you know starting to get angry and then i managed to pull myself back and i thought what hang on a minute my son is the meditation he is the moment right now and instead of meditating on my breath i meditated on him and um he gave all my attention to him and that was quite a revelatory meditation that day

    so can you tell me about any of the physical and emotional changes that have taken place since you started your practice of mindfulness and meditation

    and i’m not sure that there have been any physical changes emotionally um as human beings we are emotional creatures but um mindfulness allows you to ride the roller coaster of emotions i i can see anger i can see anger coming and i just allow it to come and i don’t get sucked in by it and allow it to come and i allow it to go and then i think and try and react respond rather than react to the emotion

    at the time i was off work due to the ms um and i was thinking that maybe website design would be a career that i could do without the use of my legs i’d be able to sit at a computer and do it i was thinking about providing my for my family and what if i had to be retired from the police and it was a time when i was just starting to notice changes from mindfulness and starting to feel better about myself so i just bought a domain name everyday mindfulness and just started messing around really and i set up a twitter feed and right at the very beginning i i just started tweeting my daily observations of mindfulness really and i saw that i was getting so many retweets and and the account was growing really really quickly and it’s just come from there really i added a forum to the website where people can come and chat and get guidance about the practice and

    that the website has just crack kind of grown organically really but mike but as it happens mindfulness has got me in such a good place that i’ve been able to return to my old job so it it has had a physical effect on you

    and i’m able to deal with the um physical ms provides a lot of physical difficulties and um mindfulness allows me to navigate them um much better i remember one time at my old house it was um a victorian house with a very steep set of stairs and i was starting to have mobility difficulties um and getting up the stairs was getting harder and harder at the beginning when mindfulness was just starting to kick in i remember a time and i had to go upstairs and i just noticed my mind was oh it’s going to be so hard getting up the stairs and i realized that’s in the future my mind’s in the future there just take it one step at a time and i found that it was so much easier

    sort of that be here now so it’s like that book be here now you know where you just try to be in the moment without reliving the past or or fearing the future that is mindfulness yeah it’s so hard i mean it is uh it is a hard um thing for a lot of people but it’s always hopeful to to hear stories about how people are able to sort of develop a whole new

    habit

    i don’t think you can make somebody meditate they have to want it for themselves and they have to there’s a certain amount of dedication that is required at the start and you need to meditate every day i think um and then eventually your practice begins to get off the ground and doesn’t have to be so rigid i don’t like to i don’t advertise really that i’m into mindfulness there’s still a bit of stigma you tell people you meditate they think you’re a caftan wearing hippie and and i think it’s becoming more and more mainstream but i don’t generally tell people other than close friends and family it has an effect on me at work has an effect all through my life you know you’re you’re going down the corridor and your boss gives you a funny look and in the past boom the mind starts going did he not like the report that i wrote yesterday is he displeased with my work and the mind starts going but with mindfulness i can see those thoughts and i can pull myself back from them

    should try meditation leslie it’s fantastic well i actually i i have been practicing uh yoga for many years so i do um you know shavasana at the end yes that is a meditation and i am not a um i don’t adhere to one type of meditation i’ve you know explored uh creative visualizations i go to a lot of different workshops and something that i really like a lot is they call it sound bath um it’s where someone you’re you’re in a restorative pose like shavasana and there is a person playing um bowls glass bowls uh or different instruments like gongs and for me it’s very powerful in terms of um being able to meditate and get to a a point of pureness and oneness i feel in me and it’s also visceral the sound does amazing things to my body so i find it healing in that way but it’s not something i do every day and consistency is uh important i think um there was um a period in my early practice i was quite lackadaisical some days i meditate some days i wouldn’t and then i was going a holiday a two-week holiday in spain and i thought no i don’t need to meditate i’m going holidays my holiday and so i didn’t meditate for the whole two weeks and then i did a meditation um i think the first day i came back and i noticed how much more untidy my mind had become and at that point i thought right i’m really gonna knuckle down and do this every single day and i did it i did every day and i increased my practice a bit and and from from then on i really began to notice the benefits well it is something i aspire to i’m always um i think it’s important for me um with a chronic health condition to try to remain open and see myself as growing and learning constantly because sometimes things that have worked for me in the past no longer continue to work and i have to open up to another path another way of seeing things so so i am inspired by your by your journey and um you know i i i will continue to explore different ways to meditate and i know when i’m

    i’m mindful i mean it’s a it’s all it’s quite palpable and then i know when you know i’ve got that monkey mind which i don’t know if we can ever totally escape completely you can you can never totally escape i i some days i sit and it’s it’s chaos up there there are thoughts floating about hitting me from every single direction and some days i sit and it’s a much calmer place that’s the nature of the mind and there’s and then knowing that you had that day a couple days ago that felt good where you were able to escape the monkey mind i hope gives you know gives the hope continued hope that you will have those again you know you you don’t get mired in that that downward spiral the uh the only constant is change right right you don’t have to meditate to breath as well i’m i’m a big sound freak as well i my normal method of mess meditation is headphones on listening to music oh okay so what kind of music um it’s generally ambient stuff so nothing too vigorous okay that’s good to know because i as sound is um is very powerful for me you know that’s helpful because some and and sometimes i don’t know if you’re ever explored essential oils a certain uh essential oil can help me uh deepen and relax my body and be that sort of um uh transition into a a uh clearer state of mind a quieter mind so all factory sense uh helps me too you can meditate on smell too yeah

    well so gareth this has been wonderful i am i wouldn’t did you have anything you wanted to say that i didn’t ask you about anything to share um only come along to my website have a look

    www.everydayhyphenmindfulness.org 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.online

    You should try meditation…savasana at the end is a meditation. I’ve explored creative visualization…I like sound bath…consistency is important, I think. There was a period in my early practice. I was lackadaisical. I was on a holiday in Spain. My mind had become untidy…I need to do it every day. I increased my practice. I talk about monkey mind…some days I sit and it’s chaos up there. And some days I sit and it’s a much calmer place. the only constant is change…you don’t meditate to breathe. I’m a big sound freak. My normal method is with headphones listening to music…ambient stuff…nothing too vigorous. Sound is powerful for me. I talk about essential oil…can help me deepen and relax my body and transition into a quieter mind. You can meditate on smell too. Come on my website and have a look…

  • Weather or Not

    Is it the Indian Summer or what? The past two days have been scorchers in San Francisco and the East Bay. I watched with utter disbelief as my Facebook feed filled with images of iPhone weather apps displaying 107° – 110° temperatures. Sure, if you live down near Palm Springs or in Arizona this is common. But San Francisco where someone, maybe Mark Twain, said “the coldest winter I ever spent was a summer in San Francisco?”

    I’ve had difficulty with warm weather ever since I was a kid. I despised the summers in Florida and rarely went outdoors. Everything was air-conditioned so you could mostly avoid the heat. But here in Northern California very few have air conditioners. But we do. It was the wisest investment I ever made.

    Heat debilitates me. It doesn’t matter if it’s humid heat on the East Coast or dry heat out here. My body shuts down. I can’t talk, my breathing becomes quite shallow, and once I got very sick and went to the hospital. That was my bottom. And I do everything now to avoid that downward spiral.

    I’ve met very few people with my condition that react this strongly to heat but I know it’s a common symptom for people with multiple sclerosis and others with compromised systems. And we’ve all heard how the elderly are impacted by heat waves.

    I put out word — via Facebook — to local friends, and especially those with known health conditions, that our house was open to them if they need to escape the heat. A couple of friends came over today. But online there was discussion amongst other friends about their attempts at rigging a swamp cooler or high-powered fan. One friend let lose about air conditioners’ scourge on the environment. I countered with a comment about meat consumption and its toll on the environment knowing she is a carnivore. No response.

    I trust that many of us try to do what we can in life to be good to each other, and the planet, but there will often be people who just don’t understand why we make the choices we do. There’s no real resolution to this blog entry but it did make me think of the many times I’ve heard other people with disabilities speak about family, or friends, who just don’t get their situation — why someone can’t eat gluten, or requires a chair with a high back, or needs to stand up frequently, or cancels a social engagement at the last minute?