Glass Half Full with Leslie Krongold, Ed.D.

Category: Podcast Episodes

  • Rare Disease and the Need for Research

    Rare Disease and the Need for Research

    February 28th is Rare Disease Day. This year’s theme is: Research. How can we support research efforts for our rare disease? We can donate to our patient advocacy organizations that

    spearhead research efforts. And we, as rare disease patients, can participate in research studies and clinical trials.

    This podcast episode features three individuals. Amy Lynn Ream and Dean Sage both participated in phase 1 clinical trials for a potential treatment for myotonic dystrophy. Hugo Trevino, who has spinal muscle atrophy (SMA), is in his third week of Spinraza infusions and already feeling positive effects.

    Hugo recommends for all those with a rare disease, check out this link to see if you’re eligible to participate in any research studies.

    If you care for someone with a neuromuscular disease — like myotonic dystrophy, SMA, or the 40+ other rare neuromuscular diseases — please donate to the Muscular Dystrophy Association.

    Loose Transcription

    Today’s podcast is all about Rare Diseases. In fact, this Wednesday, February 28th is the 11th annual international Rare Disease Day. The main objective of this day is to raise awareness for the general public and decision-makers about rare diseases and their impact on patients’ lives. This year’s theme is Research.

    So how can we – people with rare diseases and those that care about us – have an impact on research? We can donate money to organizations spearheading research studies and clinical trials for our rare disease or we – as for lack of a better word, Patients – can participate in research.

    Today I have three guests – each one has a rare disease. I do too, as a matter of fact. Though it’s often hard for me to remember that myotonic dystrophy, or DM, is rare since I know so many people with the disease…or disorder…or condition. I have both donated money and time to two patient advocacy organizations in my life and I’ve participated in a variety of research studies. The first two guests participated in phase 1 of a clinical trial during 2016. I was recruited for this drug trial but chose not to participate for a variety of reasons. I heartily applaud those that participated. Unfortunately, the drug did not move to the next level; as the pharmaceutical compared shared with the myotonic dystrophy community:

    While the field gained considerable insights into the compound, clinical endpoints and future clinical trial design, DMPKRx did not achieve sufficient exposure in skeletal muscle to have the desired effect on RNA splicing.

    The good news was that we were able to observe some changes in biomarkers such as RNA splicing and could detect low levels of the drug in muscle tissue. While we gained important learnings from this study, based on our experience we feel that these changes were not large enough to produce the level of clinical benefit we hope to achieve.

                Both Amy and Dean were part of the clinical trial; I interviewed Amy before the study ended and Dean afterwards. Amy Lynn Ream, as you may remember, appeared in an earlier podcast episode where she shared her love of singing…operatic singing. She holds an annual recital to raise money for a nonprofit providing exercise and recreation opportunities for those with physical or developmental disabilities.

    I met Amy soon after being diagnosed with myotonic dystrophy. Her parents were regular attendees at the support group I facilitated and I’ve shared a lot of good times with Amy and her family over the past 20 years.

    I know you’ve participated in a clinical trial…what was your motivation, what did it mean for you to participate in these two studies?

    I think I realized when I started singing – I love the word empowerment – if I’m not working anymore, I want to use my energy to fix the world. When we sat there 19 years ago, nothing was in the pipeline.

    Here’s what it meant to me, I thought at first I was doing it for myself because it could halt the disease…I was doing it for the next generation. Here I am not scared of needles, medical procedures. I can do this. They took a lot of blood, a lot of skin. Look at the form. [she talks about brother dying during project] Maybe I’m fixing a little piece of the world. That’s what I’m all about, Amy likes to help.

    I encourage people who have the same itch that I have to go out to ask questions if it’s something that’s important to you; you don’t have to donate tissue. Do it for your own reasons, don’t feel bad. It just fit into my goal. The people at Stanford are so good; you have 24-hour access. The pharmaceutical company paid for the car.

    The best thing about the clinical trial are the people. They become your friends.

    Next, you’re going to hear from Dean Sage – who also has myotonic dystrophy. Dean is an attorney in San Diego. I can’t remember when we met but it was at the annual patient conference put on by our patient advocacy organization. DM is such a family disease so naturally I’ve met Dean’s parents and his siblings – one who also has the disease and the other doesn’t. Dean’s a very interesting young man and in a future podcast you’ll get to see another aspect of his life…I’ll let it be a surprise for you now.

    The Isis trial was cancelled I’m not aware of any restrictions. I didn’t recognize…I feel strongly that I was on the placebo. There were people that reported benefits. I think the reason I participated…I fought to get in the study. The reason I did it was desperation; if this is a possible treatment and cure. There was an element of altruism…trying to move that ball down. That was a distant second to wanting to eradicate the disease. It was more like 7 or 8 months. The pre-screen to meet the qualifications. Baseline studies. The strength test was quantitative. After the baseline, they did the first round of injections, stay overnight. They were drawing blood for every half hour to make sure that nothing was going wrong. There were weekly injections…the most emotionally draining was trying to get into the trial. The trial itself wasn’t very trying emotionally or physically. When I found out that I wouldn’t know if I was placebo or not placebo. My hope was that if it did work that after the trial you would have access to the drug on the open label extension. It was the silver lining. I didn’t spend a lot of time trying to figure out what I was on. I left it up to the researchers.

    My last guest is Hugo Trevino. I met Hugo last year in Washington DC when I attended a conference organized by the Muscular Dystrophy Association, where Hugo works. He is also a graduate student studying international higher education. Hugo also has a rare disease – SMA, or Spinal Muscle Atrophy. SMA is also genetic and one of his 3 siblings also has the disease.

    When you meet Hugo you’re immediately hit with his amazing radiating smile and positive energy. Although we didn’t get to talk much at the Washington conference I wanted to get to know him so we connected on Facebook. When I saw that Hugo recently started taking the new drug, Spinraza, I knew he had to be a part of this podcast episode.

    So…the action items for today’s podcast — if you have a rare disease, check out the website Hugo mentioned to see if there are research or clinical studies you can participate in. if you care for someone with a rare disease, please consider donating to the appropriate patient advocacy organization to help further research efforts.

                If you enjoy this podcast and the guests you heard from, you can always make a donation to the Muscular Dystrophy Association. The link is on the Glass Half Full website. Thanks again for listening!

  • Sickness & Grief: Lessons Learned

    In the final stretch of fighting the FLU, I decided to explore why my immunity may have been off. It’s a story, a short story, that I hope is thought-provoking for you. 

    If you’re interested in learning more about building your immunity, check out this month’s featured book selection in the side bar. For more on respiratory health, make sure you listen to this podcast episode. Check out the latest news about the flu season from the CDC.

    If you want a reliable companion while fighting sickness, check out Alexa and the Echo Plus. Okay, Alexa is not a reasonable substitution for a human or pet but she never once complained that I was asking her too many questions.

    Not a bad companion when you’re bedridden.

  • 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.

  • Every Breath You Take: Tips for Respiratory Health

    It’s cold and flu season so I asked a respiratory therapist I know — Lee Guion — to offer some guidance. Here are Lee’s 7 Tips for Respiratory Health which are critical for those with a condition that causes weakened muscles:

    1. Attend a Multi-Disciplinary Clinic
    2. Get the flu and pneumonia vaccines
    3. Treat upper respiratory tract infections
    4. Hydrate
    5. Maximize your nutrition
    6. Exercise — especially disciplines coordinating the breath with movement
    7. Sleep Well

     

    But this list is only a list. You should listen to the podcast.

    There are many online videos to guide you in a practice combining breath work and movement but here’s one from the Niroga Institute for people with asthma.

    Here are Homework Assignments for the rest of 2017:

    • Listen to previous podcast episodes about everything from medical cannabis to mindfulness meditation as well as fermentation.
    • Soon there will be cool videos here.
    • Check out this documentary film, Unrest. It’s a “story of love and loss” about people diagnosed with myalgic encephalomyelitis (commonly known as chronic fatigue syndrome).

     

     

  • Pirate as a Disability Action Figure: Disability Awareness Month

     

    Professor Catherine Kudlick, of San Francisco State University, directs the The Paul K. Longmore Institute on Disability and the annual SuperFest International Disability Film Festival.

    Born blind, Catherine had numerous corrective eye surgeries and now lives with nystagmus, a condition of involuntary eye movement.

    Learn about this year’s annual film festival and a new accessibility feature — audio description — and how pirates can be a tool for teaching students about disability.

  • 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…

  • Preparedness is Universal: Planning for a disaster if you have a chronic illness, physical, developmental, or intellectual disability

    September is National Preparedness Month. If you have a chronic health condition, an injury, or are physically, developmentally, or intellectually disabled there is additional preparedness planning you’ll need to do in the event of a natural (hurricane, earthquake, flood) or other type of disaster (terrorism).

    L. Vance Taylor —Chief, Office of Access and Functional Needs at California Governor’s Office of Emergency Services, talks about his role in emergency management for the State of California as well as his role as a person with a physical disability (Limb Girdle muscular dystrophy).

    Additional Resources to help with your personal planning and preparedness can be found at the following organization’s website:

    American Red Cross

    FEMA

    Ready.gov

  • Balance & Falling: The 1st Step

    Let’s explore balance and falling. Erica Pitsch, PT, MPT, DPT, NCS, of University of California, San Francisco, talks about the various components of balance. You can learn more about the BalanceFit classes she teaches and here you can view her presentation at UCSF’s mini medical school.

    Here’s an interesting article exploring how the Dutch handle falling issues.

  • Talkin’ Tech with a Software Engineer

    That software engineer is Chris Schlechty — a fellow member of the Muscular Dystrophy Association’s National Community Advisory Committee. We talk about home automation, on-demand services, apps, self-driving cars, smart devices, and Seattle’s microbrews.

    Check out the DO IT Center which is dedicated to empowering people with disabilities through technology and education. Chris has been involved with this organization since he was in high school.