Glass Half Full with Leslie Krongold, Ed.D.

Category: Research

  • We need innovative solutions when it comes to the rare (disease) community

    We need innovative solutions when it comes to the rare (disease) community

    February 28th is Rare Disease Day. Twenty-five to 30 million Americans live with a rare disease. For more facts and figures related to rare diseases, check the NORD website.

    This podcast episode catches up with Aditi Kantipuly, a physician and advocate, immersed in the rare disease community. As a young girl Aditi learned about a child born with osteogenesis imperfecta – a rare bone condition – and has been captivated ever since. Her journey includes a masters program in public health, a Fulbright scholarship to small villages throughout India, and medical school. Currently she’s exploring the roles of health equity and social immunity.

    For earlier podcast episodes related to rare disease, It’s not that easy being rare, Rare disease and the need for research, and Rare and invisible disability + spoon theory.

    Check this webpage for a list of other podcast programs related to rare disease.

  • International Myotonic Dystrophy Awareness Day

    International Myotonic Dystrophy Awareness Day

    September 15th is International Myotonic Dystrophy Awareness Day. To learn more about helping educate and advocate for Myotonic Dystrophy visit the Muscular Dystrophy Association or Myotonic Dystrophy Foundation.

    The purpose of International Myotonic Dystrophy Awareness Day is to garner the attention of the wider general public, policy makers, regulators, biopharmaceutical representatives, researchers, health care professionals, and anyone with an interest in changing the future of myotonic dystrophy. Raising awareness of myotonic dystrophy will help improve service provision, basic research, drug development, and policymaking related to the disease. Increased funding for myotonic dystrophy research will improve health outcomes, reduce disability, and increase life expectancy for individuals living with the disease, and holds great promise for helping individuals with diseases with similar genetic bases, such as Fragile X syndrome and Huntington’s disease.

    To learn about the different types of myotonic dystrophy, visit this NORD webpage.

    In addition to this podcast host/producer who lives with Myotonic Dystrophy Type 1, the following podcast episodes have featured guests living with DM1, DM2, or caregivers in a DM family:

    Food = Medicine

    Passion and Motivation to Move through the Hard Stuff

    Working with Wounded Warriors

    Music Gives Me a Peace Bubble

    Salute to Caregivers

    Stories of Healing with Essential Oils

    Transcript:

    Welcome to my first ever complete podcast episode about my rare disease myotonic dystrophy. Or as we like to call it DM because that’s how it’s referred to in medical literature.

    Now it’s not like it’s been a secret that I have this disease. I just haven’t spoken in detail about it unless it was relevant to the guest or topic of the podcast episode.

    But I just went to San Diego to attend the first in-person patient conference we’ve had since the pandemic. For two years we held a virtual conference. And there I was reminded that September 15th is now considered International Myotonic Dystrophy Awareness Day.

    I was also inspired to do an episode because the logo design for this day was created by a young Canadian woman whom I have now met in person – including her mother. check out the design by visiting the Glass Half Full website.

    The purpose of this International Myotonic Dystrophy Awareness Day:

    is to garner the attention of the wider general public, policy makers, regulators, biopharmaceutical representatives, researchers, health care professionals, and anyone with an interest in changing the future of myotonic dystrophy. Raising awareness of myotonic dystrophy will help improve service provision, basic research, drug development, and policymaking related to the disease. Increased funding for myotonic dystrophy research will improve health outcomes, reduce disability, and increase life expectancy for individuals living with the disease, and holds great promise for helping individuals with diseases with similar genetic bases, such as Fragile X syndrome and Huntington’s disease.

    Along with Alexandra’s logo design, I’ve included links to two organizations that have additional information about the Global Alliance and how you can advocate for those with myotonic dystrophy.

    Another reason I think I’ve felt inspired to draw attention to my rare condition is that it’s not so rare…anymore. At last week’s Patient Conference, I had the unusual and bittersweet opportunity to meet a young couple who are newly diagnosed because their infant – born 7 weeks ago – has congenital myotonic dystrophy. I was drawn to this woman who looked familiar and maybe familiar just means that her facial features resembled so many of us with DM Type 1 – thin face, sunken temples, pronounced cheek bones. We often look like we can be family. But I discovered it was her first time there due to her new diagnosis. Their baby was still in the NICU at a Bay Area Children’s Hospital. I acknowledged their sense of overwhelmedness and assured them they would meet many similar families to help them find their way through all of this.

                A couple of hours later my partner texted me – from another conference session – that there were people there from Fort Bragg. Last year we moved to rural California. None of the medical professionals I’ve met here have known someone with myotonic dystrophy. I went to meet them – and sure enough – it was the young couple I’d met earlier. Now there will be three of us with myotonic dystrophy within 10-minutes of each other.

                This family will have a lot of difficult issues to work through. Healthcare in this rural community is not like living in a metropolis. I have to drive 2-4 hours to see a pulmonologist, neurologist, or endocrinologist. The families I know of that have had congenital kids thrive the best have been able to provide all types of therapeutic modalities. Congenital kids often need major respiratory and GI help for the first few years. Developmentally many are on the autism spectrum and require special education and assistance.

                As an adult with DM, I made the decision to opt for the more natural environment in lieu of the most modern medical technology but I doubt one would do that for their child.

                So, I’ve talked a little about babies born with congenital DM. In the 20-something years since my diagnosis and involvement with two patient advocacy organizations I have heard, and known, many congenital kids who have died. If you know my story, I’m most certain that the sister I had for three days – in 1963 – also had the congenital form of the disease. Hardly anything was known about DM then and medical technology did not exist to help her live. But one thing I was able to do at the conference was introduce this couple to Richard whose son is…I believe 32 years old now…and has the congenital form. Hope is important in our lives.

                In addition to adult-onset DM type 1 there is a middle-range category often referred to as juvenile onset DM type 1. These are children that are diagnosed sometime in their childhood, but they may have had some unusual issues at birth, like club feet. It seems to me that often their issues don’t lead to a diagnosis until something dramatic in their families occurs such as a congenital birth or sudden heart attack of a relative.

                I’ve met so many families that thought their teen or young adult was just lazy and lacked motivation. There’s a whole track at these patient conferences for JOAs – juvenile onset adults. Many of these adults weren’t very successful in school and couldn’t hold down a job.

                And often you can have all three in one family. The diagnosis occurs with the birth of a congenital baby. The mother has had what the family thought were personality issues. The grandparents end up caring for the congenital child. In their house are at least three people with myotonic dystrophy.

                And then there is DM type 2. A good description of the symptoms for both DM types can be found on the NORD website: https://rarediseases.org/rare-diseases/dystrophy-myotonic/ but from what I currently know is that there are many similar symptoms but in general DM2 is less severe. There is no congenital form of DM2 nor does there seem to be a juvenile form. The people I know with DM2 don’t have the look that I mentioned earlier. Although last week I did notice a few of my DM2 friends have lost weight, i.e. muscle loss and are moving slower, like myself.

                In the late 1990s a researcher known as Dr. Tee Ashizawa co-founded the International Myotonic Dystrophy Consortium (IDMC) to bring together scientists and clinicians focusing on DM. Every two years the meeting location changed and eventually began attracting patient families as well. I had the opportunity to attend two of those meetings – one in Wurzberg, Germany and the other in San Sebastian Spain.

                Seeing people with myotonic dystrophy from other countries is pretty amazing; unfortunately, few spoke English and that’s the only language I’m fluent in. but in an online chat right before the IDMC met in Spain I became friendly with a man in Switzerland with DM1. Erich and I wrote emails back and forth and became close friends. I even convinced him to join Facebook. We met twice in person twice before he died; the first time in Barcelona and then in Iceland.

                Erich was able to attend support group meetings in France, Germany, and Switzerland so I got to hear about patient’s stories from outside the U.S.  At the IDMC I saw people who looked like me – thin with the similar facial features. I appreciated hearing presentations from different researchers – Japanese, Germans, Italians, Dutch. Some would include photos of their patients. Maybe other diseases have these global connections too? I hope so.

                Myotonic dystrophy is known to be the most common adult-onset muscular dystrophy. Previously thought to affect 1 out of every 8,000 in the general popular, recent prevalence studies suggest that it is more common with 1 out of every 2,100 people. Since the condition is multi-systemic and the symptoms can be written off as something else – i.e. lack of motivation, Irritable bowel syndrome, weakness, or even MS….it is often un-diagnosed.

                My partner and I often spot someone – a stranger – who resembles me and we wonder, “does that person have DM and not know it?”  Drawing awareness and educating healthcare professionals is important.

                At this year’s patient conference there were more pharmaceutical and biotech companies present than ever before. I listened to a few of their presentations but most of the science is lost on me; there’s a lot in the pipeline, as they say. My big takeaway was we had more and better food at the conference than ever. Thank you Pharma!

                I don’t believe so much in cures but I have a lot of hope for treatments. I have no regrets in life. having this condition has taught me things I likely never would have learned without it. my challenges have been many but I have found many ways to work around and mitigate the physical and emotional pain.

                I do hope treatments are in the near future that can provide young families with more hope that their child can live a healthier and happier life. I know how devasted my mother was from the loss of an infant and she never lived to understand why.

    Consider what you might be able to do for International Myotonic Dystrophy Awareness Day on September 15, 2023.

  • Physician with Muscular Dystrophy Champions Genetic Testing

    Physician with Muscular Dystrophy Champions Genetic Testing

    Dr. William Lowery, a practicing pulmonologist at Alameda Hospital in Northern California, was diagnosed with Limb-Girdle muscular dystrophy some 20 years ago. He’s now founded a non-profit organization to help others shorten their diagnostic odyssey with free genetic testing and his expert guidance.

    Below are un-edited portions of the interview with Dr. Lowery:

    I was biopsied at Duke University because actually ten years prior to that, my mom had rounded up. My dad had the same condition, a limb girdle muscular dystrophy. His dad had it. And as far as we knew at the time, I was the only one of five children that that showed any sort of weakness. And so my mom somehow got in touch with Duke University and rounded up all these relatives in the Lowry Family Tree, who had this late onset limb girdle muscular dystrophy. And then so Duke said, Look, we need a muscle biopsy. Will somebody come forth? And so I flew from California to Durham, North Carolina, and had a left leg muscle left leg muscle biopsy. And there they found that it was an inclusion body myopathy. So that was kind of an unusual that was kind of a red flag for a muscular dystrophy because there’s several types of inclusion body. But it they finally got together with a finish, a group of Finnish researchers and Italian researchers who had families with the same sort of inclusion bodies. And together they found that it was a gene variant on the the DNA Jbe six mutation. It’s on chromosome seven. I forgot where it is and that, but they were able to put that on the map, and that was probably back in two thousand five. And since then, there’s been a genetic explosion in being able to arrive at a genetic diagnosis. And maybe, you know, you wouldn’t need a muscle biopsy if you had the genetic diagnosis. So basically, I would say probably 2001 with my biopsy, I knew I had an inclusion by a muscular dystrophy inclusion body of myopathy they call it, but it probably wasn’t genetically defined until 2005 or 2007.

    As a as a child, I could see my dad getting weaker and weaker and not being able to do things. And the same with my grandfather and my grandfather, his family, you know, relatives had and they just way back then around the eighteen hundreds, you were just lazy. You know, he he had an accident. He claims he had an accident when he was plowing and a plow fell on him. And that’s what caused his weakness in his legs. So as a farming injury? Hmm. And then my dad sort of knew that something was up, but he never went to the doctor. And when he finally went to the doctor and found out he had a muscular dystrophy and it was incurable, you know, he it really upset him. I thought there was a pill he could take or surgery. And so my mom, you know, I guess, saw me getting a little weak or whatever, and actually, to her credit, really did all the legwork on getting all the relatives. You know, there’s a family reunion, I think, which kind of triggered all this. And she just put all these people together with Duke University and and the rest is kind of history. I knew. So I saw my dad, but you know, I was still running doing everything I wanted to do.

    But the thing about me is that I was I always came in last in red and foot races and I was picked last for kickball team. And you know, I mean, so but it never, never dawned on me that there was something wrong with me. I was just happy to be involved. And, you know, I had the usual desires and drives as a teenager and I wanted to play professional basketball. You know, that was never to be, of course, but I never put two and two together. I ran Cross Country in college. I was still, you know, I did fairly well. And you know, I was, you know, I was doing everything a person could do. It’s just that I wasn’t the fastest person in the world. But again, it wasn’t until I was like 30 or 30 that I started putting things together. You know, this was past my medical training, and I still thought I was normal. But maybe, maybe I don’t know why. I guess you would call it denial, but it was on a very subconscious level.

    And it was again, it was almost a selfish desire to go into medicine because, you know, I majored in a bachelor’s in science, chemistry biology and I said, you know, I thought, What am I going to do with all this? And I’m kind of a social guy. And so I thought medicine was a nice blend of that. I guess I should have taken over my dad’s business. He was an engineer at a metal working shop, but it just didn’t interest me at all. So I chose my own path, you might say. But then, you know, through medical school, I sort of had an awakening that, you know, there’s something to this. Maybe I could help this out. But you know, all the research was still primitive, and I got drawn into other areas internal medicine and then pulmonary, which I’m a practicing pulmonologist now. Thirty five years at the same hospital in Alameda.

    there is a new naming, a new naming system I think about five years ago where you know of the the types we know that, you know, I kind of like to split things into autosomal dominant world, right? I’m a recessive now. Myotonic, of course, is autosomal dominant. As I recall, two types. Yeah, so. So sticking with the autosomal dominant, they tend to be milder later onset and with exceptions, obviously, and some can involve heart and lungs more than others versus autosomal recessive, which are 80 percent of the muscular dystrophy, the limb girdle muscular dystrophy. We’re not talking about Duchenne. That’s kind of in a different category, better research and stuff like that. So the autosomal recessive that is the two bad genes, they tend to be younger onset involve cardiac and respiratory a lot more frequently. So, you know, I am thankful in a way that I had a later onset. Having said that, there are there are genetic engineering company Sarepta in particular that’s come out with whether they’re developing therapy for five autosomal recessive limb girdle muscular deficiencies to A, B, C, D and I think I or something like that. So you know, that can be easily googled by just Googling Sarepta, but so they’re about five years ahead of autosomal dominant as far as therapy.

    So that’s the way I look at the world, and that’s why I developed a foundation the LGM de 1B Foundation, which doubles as an autosomal dominant registry. And so anybody who has an autosomal dominant condition, even yourself, if you’re not part of a foundation and you know, I mean, it’s like the 20 percent we’re really like stepchildren, you know, so I felt compelled to organize the autosomal dominance because in our world, the therapy will be different. But but homogenous the same things that would help you would help me versus like CRISPR, antisense oligonucleotides knock knock down strategies that will block the bad protein. So that’s a couple of years away. But that’s why I thought I would organize people in my registry. So when people come knocking say, Look, do you have Mathebula myopathy at this time? Do you have myotonic dystrophy at this time? You know, if you’re not already involved in that sort of registry that might represent you, then I’ll take all comers, all stragglers, so to speak.

    Well, you know, all you know, University of Washington, St. Louis is the epicenter for SGMD 1d, the DNA JB six variant. So we kind of hooked our way. Into to them, and it just so happens that one of the main researchers has the same condition, so he’s highly motivated to find a cure. So anyway, there are other there are seven other centers who are in this consortium that are also looking into that as well. But they’re the main folks. But again, they were going to enroll two or three people a month and a natural history study, but that came to a screeching halt. So what do you do in the meantime? Lo and behold, with social media, with the relaxation of of of of licenses across the United States, medical licenses, what I did was and I found out that there was a lot of free genetic testing. You know, like Invité has a lot of sponsored testing, not only for muscular dystrophy, but seizures for I mean, if you go to Invité and look at their sponsored panels, it’s voluminous. You can get a lot of free testing.

    So I signed up with them and I I put the word out through social media that I would facilitate free testing. But you had to have a doctor who could review the test in the provides free genetic counseling. So everything was in place for me medical legally. I was just the conduit, but I was enjoying analyzing this and giving my two cents because like you, you’ve learned a lot about these conditions. And so I’m able because I had the condition, I have a medical license and I’ve gone to, you know, sort of grad school, you know, night school on muscular dystrophies and genetics. And I’ve watched a lot of YouTube channels, but I feel like I’m qualified enough to be at least a conduit. So as you know, I’ve got up to one hundred and thirty patients and about 30 percent I’ve made a diagnosis. It was not known. So I’ve helped, you know, a third of people. There’s other people that we have suspicious genes and we’re still kind of doing other things to try to sort their conditions out.

    All the genetic testing that I just told you through Invité and other other big powerhouses is sponsored. And again, you know, genetic therapy companies want, you know, they make big money if they can deliver therapy. So it’s it’s good for them. I guess everybody’s making money. I don’t question it. I just I just go for it as long.

    So that’s very gratifying. But, you know, the autosomal recessive, there are treatments for that and there. We’re going clinical trials now, and it’s very exciting, but again, autosomal recessive. Your audience has to understand that autosomal recessive is like having two bad cars in your garage. You can’t go anywhere. So all you have to do is slip in a car, a good car and you’re off to the races. Autosomal dominant is different because you autosomal dominant gene is producing a protein that’s toxic. Ok, so you know you can’t get rid of it. All you can do is go in with CRISPR and plug it out and put in a good gene. Or you can send in a little binding messenger RNA to block that bad art and messenger RNA called a knockdown strategy. So those are the two things that are working working right now for autosomal dominant and probably autosomal recessive, too. But all you have to do is slip in a good gene. And you know, the case I give is hemophilia. Ok, hemophilia is, you know, they bleed into their joints and bleed into their tissues, and they receive a million dollars worth of blood products a year. Wow. So, you know, and they don’t like, you know, they fall and they say, Oh my God, my joints are going to swell up and I’m going to be in pain for days.

  • 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

  • It’s not that easy being RARE…

    It’s not that easy being RARE…

    https://oembed.libsyn.com/embed?item_id=8800367

    February 28 is International Rare Disease Day. There are over 6,000 rare diseases or disorders with 80% having genetic origins. Global events are planned to draw attention to the need for medical research.

    This brief, light-hearted podcast episode shares a few less critical aspects to having a rare disease. For a deeper dive, check out last year’s Rare Disease podcast episode.

    Make sure you become a Subscriber to our YouTube channel. All subscribers are entered into Glass Half Full give-aways. Picture yourself sipping your favorite warm beverage…

    Want your own mug? Subscribe to the Glass Half Full YouTube Channel.

  • Gratitude & Thinking Small

    ‘Tis the season to be thankful, grateful, and appreciative. But how does one get to a place of gratitude if you’re feeling miserable — physically, emotionally, or both? Toni Bernhard, author of How to Be Sick (Second Edition): A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, talks about gratitude as it relates to the Four Sublimes States of Buddhism. 

    A brief introduction to Robert A. Emmons‘, Ph.D. research on gratitude is presented on the physical, psychological, and social benefits to a gratitude practice. Emmons has written a number of books but here is a quick read for those anxious to jump into a gratitude practice, The Little Book of Gratitude: Create a life of happiness and wellbeing by giving thanks.

    Join Leslie with her 30-day gratitude challenge of daily journaling in the Glass Half Full Facebook group.

    Listen to Toni Bernhard in her earlier podcast episode and her articles on Psychology Today’s website.

  • 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!

  • Do It for Science: End of Life Decision-Making (# 1)

    Do It for Science: End of Life Decision-Making (# 1)

    If you’d like to plan for the future and bring peace of mind to yourself and loved ones, you can engage in end of life decision-making while you’re still of sound mind and body. In this episode, Katharine Hagerman, PhD, at Stanford University talks about biobanks. If you know nothing about biobanks, give a listen and learn.

    Find out more about the Stanford Neuromuscular Biobank and National Disease Research Interchange.

    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 today’s podcast episode concerns intentional and mindful planning for the future and someone once said there are two sure things in life death and taxes well i would be bored silly talking about taxes so this is about death but we’re not going to be all dark and gloomy this is the glass half full we’re all about that silver lining right right can i hear a hell yeah

    okay as i see it once you’re diagnosed with a health condition that is untreatable and incurable like mine you have two choices you can become a victim and feel bad for yourself or you can move through life trying to make the best of what you can and be very intentional about what you do and i’ve chosen the second option now you don’t have to have a life-threatening condition to acknowledge that you will die unless you’re larry ellison or elon musk fyi they’re both super wealthy men funding research to defy aging and death we all can acknowledge we’re gonna die except those two guys and if we spend some of our time while we’re still mentally and physically well enough to think a bit about end of life decisions we get a more peace of mind and also make the inevitable process easier for our family and loved ones i’ve been doing spring cleaning throughout the year because the idea of having my partner go through all of my stuff once i’m gone and make a million decisions while still grieving well i just don’t want to do that this episode is the first of future podcast episodes where i’ll explore an aspect of end of life decision making and this may not be a new area to ponder if you have a driver’s license you’re likely to have considered whether you want to opt in to organ donation should you be in a fatal car crash so we won’t be talking about advanced directives living wills or what type of music you want played at your memorial service those are all aspects of end of life decision making will cover in the future but this episode focuses on science and medical research i realize that death is a very sensitive topic people have some very strong feelings and reactions to these issues for some reason i grew up knowing that my mother did not want to be buried in the ground i knew this because she said it many times when she died 25 years ago my father and i immediately knew we had to find a mausoleum she never written this down or made any other specific requests about end of life decisions but just to keep her out of the ground i may have hair inherited her genetic disease but i definitely didn’t inherit her ideas about death once i’m gone my body is not me i want the simplest and most eco-friendly handling of my physical remains and if any part of me can help advance medical science i’m all for it so that’s why i strongly support making the decision to join a research facility’s biological bank take my tissues

    okay no more humor no more levity all right it’s time to tell you about my guest for this topic katherine hagerman catherine is the research associate for dr john day at stanford university and dr day is a neurologist with nearly 40 years of experience in neuromuscular disease research and clinical practice catherine has been in stanford for four years now and she helps run research studies and drug trials and manages the stanford neuromuscular biobank i know catherine because both she and dr day are part of my myotonic dystrophy community which is also referred to as the dm community catherine’s presented at my support group meetings and she attends our annual patient advocacy conference but let me assure you before we go on this topic and the information provided is not only for people with neuromuscular disease so please continue listening i have one more little story to share but i think it will make more sense after you listen to my conversation with catherine i don’t know if i ever asked you this but i was wondering you you have a phd what was your dissertation on i went to the university of toronto to get my phd and my supervisor was interested in um what we call unstable microsatellites and human disease and what that means is there are these places in your dna that sometimes can get larger and when they get larger or when they get too small they can cause a condition so that includes conditions like huntington’s disease and myotonic dystrophy and spinal cerebellar ataxias and there’s a whole list of them that are caused by the unstable repeats so my thesis was trying to understand what made the repeats unstable and so how did that how did did you choose that because your the the professor you were working with was involved in that line of research or had you already had a avid interest um i always had an avid interest in genetics as a whole starting in high school and when i was trying to narrow down exactly what i wanted to do for a phd um i found dr christopher pearson who eventually became my supervisor and after i interviewed with him i thought hey his genetics are really cool and i i called my dad and i said hey dad um i had this really great interview and um dr pearson is doing all these kinds of um research on all these different diseases my dad said well you know myotonic dystrophy that’s the one that your step family has and i hadn’t put two and two together so it became the perfect fit for me both from a fascination in the genetics and a motivation to help myotonic dystrophy research move forward

    from the beginning when you started four years ago were you involved in the biobank when did that come about well so dr day came to stanford more than five years ago and he already had this master plan for developing the neuromuscular research program developing his research lab and creating a biobank but at that point the biobank didn’t exist so that was one of the first projects that i worked on once i joined the lab was to help develop the biobank decide how it would be run to develop materials for people so that they could understand it better and so can you give sort of a generic explanation of what a biobank is sure um in general i like to define a biobank as just a collection of bio biological samples they’re usually collected in order to help support scientific research mostly because there are lots of researchers out there that don’t have access to people with these rare conditions so there can be people in a laboratory working on a disease but they rarely get to meet someone with that disease so biobanks are often set up to collect samples from people so that they can facilitate the sharing of these very rare samples to researchers do you have any idea how popular or pervasive biobanks are connected to medical schools like stanford’s well i think medical schools the majority of them that i know about do have what they call anatomical donation programs and that’s where they you can donate your whole body to research in the sense that you can help train a medical school student and they will learn how to all the different parts of the body and you know how to do surgeries on those different areas but in terms of banking samples there’s very few that i know that would actually collect tissues and store them so yes medical schools have anatomic donation programs but most of them don’t collect samples to then be shared for research and so the tissue samples that you look for are not only from the deceased correct so every biobank is run differently and has a different set of goals at our biobank and many other biobanks it does not have to be what they call an anatomical donation or tissue donation after someone passes away we are very interested in getting tissues when someone has a scheduled surgery so once the doctor or the surgeon has gone in and you know taken out tissue that they might need for whatever diagnostic purposes if there’s extra tissue left over we make arrangements with them in advance that they will freeze it and ship it off to us i know it this is you know discussed in the dm community but is there also a push in the other neuromuscular diseases for the biobank at stanford um there definitely is a push and there is a need for tissues from many different neuromuscular conditions so our biobank is open to collection of tissues from all different neuromuscular conditions and how about the geographic parameters anywhere in the country or just california the stanford neuromuscular biobank is designed to be able to collect tissues from people from anywhere in the united states in general what we do is we work with surgeons or other people in the area where someone is interested in donating and they do the tissue collection on site and then they send the samples to us so is there any type of universal process or procedures by which all biobanks operate every biobank is run differently our biobank is run specifically to collect tissues from people with neuromuscular conditions but there are other biobanks like the ndri so the ndri is the national disease research interchange and you can go check them out online they don’t have very specific goals for the types of conditions people have or tissues i know that they collect both tissues from surgical procedures and when people pass away they can collect tissues then as well with a larger organization like that their system for enrolling is online and there’s a you know a 1 800 number to call at any time of day or night for questions so every biobank is different and they run their enrollment differently depending you know on their size and their goals okay so if someone who’s listening is interested and they don’t have a neuromuscular disease then that would probably be a good place for them to start yes the ndri is definitely set up for people with any condition or no condition whatsoever what is the process for registering what is that like what are your conversations like with families to communicate the availability of a biobank usually our process is is that we send an information and enrollment package to someone who’s expressed interest in the biobank um and then they fill out the forms and sign the consent form and send all the information back to us and that information includes not just their contact information but information on their doctors or if they’re considering tissue donation when they pass away then they can even include funeral home information and next of kin information and we really push that it’s important if you’re considering donating tissues when you pass away to have a conversation with your family because it’s actually going to be your family member that calls us if you pass away or if you’re quite sick so you want them to be mobilized and motivated and know what your wishes are and then if you pass away then they are the one that actually still has to sign a consent form to allow us to move forward so getting your family on board is very important part of the process that’s how our stanford biobank works with our consent forms other biobanks may have a different procedure but for us that’s what we require even if you have their signature on file yes because now i don’t know a lot of the legal logistics but my understanding is that when you pass away your rights are now in the hands of your next of kin and so they have to be on board in order to let this process move forward okay have you had situations where you were under the assumption that the family whether it was a spouse or a parent or a sibling was clued into what the the patient wanted and then they decided they didn’t want to go through with it yeah we have had instances where um someone with neuromuscular conditions signed up for the biobank and when they passed away either the next of kin didn’t call us in time or the family sat down and talked about it and they decided they didn’t want to go through with it there’s a lot of different reasons people may choose to not get involved or not support this type of work so it has happened but usually we have the most success when people have pre-enrolled and they have had those conversations with their family in advance so when you said in time can you clarify that in general tissues start to degrade when someone passes away and so we need the tissues to be collected usually within 24 to 36 hours after someone passes away so if someone’s in hospice care or on life support we’re already at the stage of making arrangements with the hospital or the hospice making arrangements with the funeral home perhaps having the conversation with the family members just providing them with the blank consent form so that they’re ready to sign when their family member passes away and so let’s say the patient the person passes away they never went through the process of registering for the biobank and the family hears from someone in their community hey are you going to donate tissues of so and so and then they want to get the wheels in motion you know right when the person passes away is that possible or or is that uh just you know too late it’s definitely a possibility at our biobank i’m not sure about others but within our biobank we can get a call from a family member that hasn’t had their family member registered and we can get the ball rolling because in the end it is that next of kin family member that is making the final decision so we can get a call usually within the same day of someone passing away and we have a lot of success at getting tissues collected but the ideal situation is that the family has already been involved this person has already pre-enrolled because then we have things more set and in place and we have more time to find someone that could do the tissue collection locally and so are there any costs to the family there are no costs to the family that’s how we’ve designed this whole process so basically what happens is if there’s any extra fees that might be incurred in that 24-hour period where we are collecting tissues the stanford biobank covers them even if tissue samples are collected the actual body can still be prepared for a funeral right so with a tissue collection that happens after someone passes away we make all the arrangements with the funeral home and the hospital and whoever else needs to be involved in the process the tissue collection happens within 24 to 36 hours and then the body is transported back to the funeral home that the family has selected and at that point the family can go ahead with any type of arrangements they had already planned whether it’s a memorial and or an open casket or a cremation you know these are all still available options for the family so do you have any idea i mean just roughly the percentage of patients that you’ve talked about this with or families that you’ve talked to about this the biobank how many actually do register um i would say the most number of tissues that we have coming in are from people that were not pre-registered and that’s in part because we’re a relatively new biobank and also because a lot of the conditions we work with are not ones that we expect people to pass away very soon so there are other conditions where people may have a very fast progression but the time between enrolling in the biobank and tissue collection could be relatively short what tends to be the most common concerns of patients and their families when you engage in the conversation with them about biobank um i think there often aren’t really concerns with families they just want to understand the process of what happens who they should be calling and what they need to do and so we stress that other than making that first call to us to let us know what’s going on and making sure they sign that consent form after someone passes away we try and make there be as few barriers and stay out of the arrangements with the family so the only other questions we’ll often get are related to cost so there are other biobanks that are set up like the medical schools so i wouldn’t call them biobanks but the medical school’s anatomical donation programs where the family would actually hand over the body to the medical school and that medical school will take possession of the body for several weeks and at the end they will provide a cremation and return the cremains to the family and so that’s a very different situation from how our biobank is run so sometimes people have questions about the pros and cons of those two different options and you would also mention to me that you get a lot of questions about saliva and other bodily fluid donations our biobank is set up to really focus on the tissues that are most important to researchers that are getting requested the most and those are things like muscle because it isn’t these are neuromuscular conditions so we get a lot of people that say oh yeah you know i can give you a vial of blood right here right now but in the end there aren’t as many researchers that need blood or dna from people with neuromuscular conditions especially because most of them have already been identified like the genetic cause of those conditions so we sometimes if someone is undiagnosed will collect blood but for the vast majority of other conditions that have been already diagnosed in someone we don’t necessarily need blood or urine and um oh gosh my brain just

    oh how about brains that’s what you you’re also interested in brains aren’t you yes so um muscle and brain are the two main tissues that we get requests for because muscles are very difficult to get your hands on but you can collect it through some surgical procedures but other muscles you’ll never be able to get before someone passes away and obviously brain samples you won’t be able to get unless someone passed away so they are they’re very hard to get and they are probably the most requested tissues um i think it’s really important to consider donating to a biobank whether it’s the stanford neuromuscular biobank or another like the ndri with people that have a specific medical condition sometimes it can give them a sense that they are helping people in the future so even if there isn’t a cure available for them today they might be able to help people tomorrow that have their condition to make sense of their condition and to help things move forward in the future are you ready for my little story it happened nearly two years ago a member of my dm community called me from a hospital located in the middle of the united states when his adult son passed away his son had the congenital form of mitotic dystrophy and probably wasn’t expected to live as long as he did when he was born but still it was sudden and devastating and his father who had become a friend called me in tears to see if i could help make it happen he not pre-enrolled his son in the biobank he didn’t say much but i felt like not only did he want to do what he felt was the right thing but it was a way to make sense out of a difficult and senseless back that his son died far too young and had led a difficult life with a devastating disease it was a weekend and i started making phone calls katherine was actually on vacation but her role with biobank is pretty much 24 7 so she eventually put the wheels in motion from hawaii or someplace exotic she put a local stanford person in touch with the midwest hospital’s morgue and the midwest funeral home and everything moved fast so my friend could focus on his grieving process and his son could help advance medical research

    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

  • Resilience & Aging with a Disability

    Resilience & Aging with a Disability

    Research findings from the Aging and the Quality of Life survey — conducted at University of Washington’s Rehabilitation Research & Training Center — report higher quality of life associated with a disabled person’s higher level of self-reported resilience.

    After listening to this episode, check out this Fact Sheet for more information about building your resilience. Additional resources for building resilience can be found at the Greater Good Science Center and the book, Bouncing Back: Rewiring Your Brain for Maximum Resilience and Well-Being by Linda Graham.

    If you’ve participated in research or clinical studies for your chronic health condition, please message me at our Facebook page.

    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 welcome back well that’s for me it’s been three weeks since my last podcast episode and i have really missed it did you miss it too i hope so hey this process is good for me but i hope it’s also good for you i was out of town in the big apple so to speak attending the accessible yoga conference what a city i’m so glad i lived there when i was young and more able-bodied it’s not so much having mobility issues that prove difficult for navigating new york city there’s just so much stimuli the sights the sounds the smells all the people moving at a fast pace stairs everywhere small spaces to move through or live in oi one big oi okay back to the here and now this is the first of future episodes i hope to explore one’s participation research studies relevant to your health condition i’ve participated in several most are self-reported surveys that are either mailed to me or i take online and but self-report i mean i’m responding to questions about my behaviors feelings activities and no one is observing me it’s how i view myself this type of research is by far the easiest for most people you don’t have to leave your home i’ve also participated in research studies where i did leave my home over a period of four years i traveled across the country to rochester new york for three separate visits to a hospital clinic where not only did i fill out self-report surveys but i also had diagnostic procedures and even gave them a piece of me a piece of my leg muscle which they said was the size of a pencil eraser but i digress i won’t talk about the noise the machine made which captured my leg muscle i’ll save that for another time i’m going to focus on a different research study that i participated in since 2009 i’ve been involved in an annual self-report survey affiliated with the university of washington i’ve never met anyone affiliated with the research study and generally takes me less than an hour to complete the survey and i recall receiving a few newsletters over the years about the progress of the research well this past january i decided to contact one of the research study coordinators affiliated with the study to see if they were open to an interview and they were i spoke with amanda smith the research manager for rrtc that stands for rehabilitation research and training center this is a program funded by the national institute on disability independent living and rehabilitation research and that program is housed at the university of washington the state not dc amanda explained to me that the study i’ve been participating in for the last eight years is called aging and the quality of life survey it’s a longitudinal survey across the united states whose initial goals were to learn more about healthy and successful aging of people with disabilities and what that means as well as how people experience secondary conditions those secondary conditions secondary to their disability include pain fatigue and depression over time the study has received additional funding so the researchers have also sought to find out what barriers may exist for accessing health care and they also explored what role positive psychology has played and how people experience and manage their secondary conditions the birth of the positive psychology movement is said to have begun in 1998 it is the scientific study of human flourishing and an applied approach to optimal functioning so positive psychologists examine concepts such as happiness resilience as well as other strengths and virtues that enable individuals communities and organizations to thrive so let’s pause now and define or as researchers might say operationalize the term resilience resilience refers to the capacity to recover quickly from difficulties and balance back into shape research is affiliated with this aging and the quality of life survey at the university of washington asked people with disabilities to describe resilience and some of those comments were being buoyant rolling with or dancing with a disability taking things one day at a time while also planning for the future finding a new normal as life changes and i would say that description most resonates for me because i always feel like i’m acclimating to a new normal and when i say always um i don’t mean always i have repeated episodes of assessing what a new normal is um back to the list another uh response to what is resilience making the best of life with a disability and trusting that stressful times will pass like the weather but before we go too far into resilience let me tell you more about this study and how did they find me a men explained that they were most interested in people who were living with a disability that they had acquired earlier in life and had aged with the condition rather than aging into a disability such as osteoarthritis so it’s a notable distinction don’t you think aging with a condition but just regular aging and because you’re aging you’re more inclined to have certain disabilities such as osteoarthritis they selected four chronic conditions multiple sclerosis muscular dystrophy spinal cord injury and post polio the primary tool the researchers use to find people with muscular dystrophy is a registry at the university of rochester and i’m in that registry so i was interested to know how many people have been involved in the study and how the researchers decided to focus on certain areas such as secondary conditions so we had um 862 participants in our first survey and today we have 1518. however we did recruit some new folks into the survey when we got that new round of funding because we had initially you know folks consented to completing up to four surveys so then um we had to reconsent when we got the new grant um so i went ahead and looked and of the 1862 who completed the first survey we have 70 of those folks still participating so 1322 of them are still participating in the study is that a good sort of retention oh it is okay that’s great particularly i think for a study that um we had to reconsent so we couldn’t you know we couldn’t bug people and say hey but you completed you know this last one are you sure you don’t want to keep you know we kind of just invite them once and you know if they’d like to continue then they can we have about a 90 response rate each time point so for everyone that we send a survey to we get about 90 of them back which is pretty high and that may be due to our diligent reminder letters and reminder calls that we make i wonder if there are differences between different conditions because in my disease community myotonic dystrophy most people that i meet are so eager to participate in some type of research and especially something that is self-report just you know once a year is is very accessible yeah um and you know i know that we do get some comments that our surveys are quite lengthy um and i understand that a sentiment the primary reason i would say that that we lose folks is because of their passing um and that’s particularly true for our participants with post polio syndrome who tend to be older than the other groups of individuals and then the second reason i would say is just because we lose their contact information that they’ve either moved or gotten a new phone number and we’re not able to reach them again back in 2008 before we even did the first cycle of the survey or the first survey itself we ran some focus groups with you know folks who were living with these conditions and we asked them about what healthy aging meant to them what types of things would be important for us to look at what should we be asking and that’s that was one place where we came out of this real focus on secondary conditions and also about the importance of support so social support resilience ability to participate in valued activities so that really informed some of the questions that we asked in the subsequent surveys and then we did another round of focus groups when we got the second cycle so that would have been between the fourth and fifth survey and we asked again about this idea of healthy aging but we also asked about access to health care you know are there things that you’ve encountered and your healthcare experience that were a barrier to you you know like a scale at your doctor’s office that that is a wheelchair accessible things like that and then we drafted some access to healthcare questions based on the feedback and then went back to our our participants and asked a few of them to read them over you know are these appropriate are we missing anything uh things like that so we try and incorporate more qualitative pieces to our work when we can we also have an advisory board that includes folks from our from our projects the research is still ongoing with the seventh survey currently being processed the team will spend the next year evaluating the data and hopes their funding agency will sponsor another grant but there are tangible results and products available to the public i asked amanda about these you know researchers are using some of the data so it’s not as if it’s been held somewhere and you’re just waiting for an end date to start analyzing it what can you or other researchers glean from uh some of the work that’s been done already sure yeah so i think one of the primary themes that came out of the data from the first few years of the survey was really this focus on middle age we learned that for folks who were living with with a physical disability they tend to experience these secondary conditions like pain fatigue or depression most acutely during middle age and we found that participants who reported that these secondary conditions created just about as much trouble in their daily lives as the primary physical problems of their disability did so really this focus on a middle age we published a paper about chronic comorbid medical conditions so prevalence of things like cancer diabetes arthritis and we learned that our prevalence rates in our survey participants were slightly higher than that of the general population not a lot but slightly higher and that the age of onset was was a little bit younger than the general population and again it fell in between that middle aged middle age bracket so between 45 and 64. so so this this real focus on middle age was a big take home for us and you know a lot of the aging research that is out there is focused on people who are 65 and older well you know what about middle age so um so that was a big takeaway for us well i’ve often felt that that my i could characterize my condition to friends and family who don’t really understand it as imagine i’m 20 years older and yeah you know what would a 70 year old or plus be going through and just you know the moving slower the all the um as you call them secondary conditions that are sort of heightened at an age when my peers are not necessarily experiencing them so sure that’s a concept that we would call accelerated aging perhaps not such sobering news regarding comorbidities and accelerated aging where is the good news you ask remember i started this episode talking about resilience well i saved the best for last here amanda talks about a relationship between resilience and how people with disabilities experience their secondary conditions and we were interested in learning how resilience may be related to the ways that people experience their secondary conditions or their ability to to manage those secondary conditions as they get older i’ve had a couple podcast episodes where we do talk about resilience so that’s very interesting to have that term come up it’s it’s interesting to see the research sort of shift from you know how do we help people who are experiencing pain or fatigue to sort of this more positive focus on how do we help them build resilience how do we help them stay engaged in activities that are of value to them so i know i sent you a bunch of questions and i will get to all of them but some just pop up and i’m wondering what have you learned about resilience if anything yet yes so we’ve um we’ve published a few things about resilience i know you mentioned uh one of the charts that was included in a newsletter that we had sent out to our survey participants and that was done or that came from an analysis that we did with our survey data from the first year through the fourth year and we looked at how people reported resilience and also how they reported things that they were experiencing like pain or fatigue and also their satisfaction with their ability to participate in social activities and their physical functioning what we found was that resilience seemed to act as sort of a buffer if you will in the trajectory of those secondary conditions so people that reported higher levels of resilience at the first survey reported less of a change in things like pain over time so of those who had lower resilience reported their pain also getting much worse over the four years and those with higher resilience reported less of an increase if you will but we still don’t know uh is resilience or maybe we do know i’m not familiar with the research but is resilience something that you sort of garner in childhood and it’s stored away or is it something that people in their 40s 50s and 60s can build that i think is up for debate in the literature as a whole i i think that our researchers would argue that it’s a little bit of both um that some people you know start out with a little bit more resilience than others but that it’s certainly something that you can build and strengthen over time we produce a few different evidence-based fact sheets on different components of aging with disability and we just published one on resilience and ways that you can build resilience and so that’s available it’s free to download it’s on our website we it’s called how to bounce back okay and all of our fact sheets are written by one of our investigators or postdoctoral fellows and then reviewed by our researchers and then they go through a set of reviews with consumers so with folks who participate in our studies who are living with these conditions um we usually do at least three rounds of those on each fact sheet to get feedback on you know what’s useful what’s not is there anything we left out um what don’t you like things like that and then we do another round of revision revisions and then we publish them so we’re pretty proud of our fact sheets and i think people have found them to be pretty useful so certainly take a look we’ve got quite a few of them up on our website so how do these trickle down in healthcare workers hands throughout the country so we partner with a few different organizations to try and disseminate these as best we can certainly we don’t have a marketing budget to be able to get these out as widely as we would like but we do partner with the american association on health and disability and they promote our fact sheets for us we’ve also partnered with the national council on aging our funding agency helps to promote these for us as well and then we have you know our website and our social media accounts that we use to promote these kinds of products more good news there are organizations and books out there that can help you cultivate resilience the fact sheet which amanda talked about is linked to the podcast notes on the glass half full website i’ve also included links to the center for greater good a program affiliated with the university of california berkeley with articles and videos about resilience i invite you to check out these resources to help you build on the reservoir of resilience you already have i’m definitely working on that for myself take care and thanks again for listening thank you for listening to glass half full leslie invites you to leave a rating and review on itunes this helps spread the word to others dealing with chronic health issues for show notes updates and more visit the website glass half full dot dot online.online

  • The Science of Yoga

    The Science of Yoga

    Murali in the cow-face pose

    In this episode my guest, Murali Ventkatrao, discusses the yogic perspective on health and current scientific research exploring how yoga, pranayama (breathing), and meditation affect human physiology and has the potential to treat many pervasive diseases.

    For additional information about Murali and an introductory webinar delving deeper into the science of yoga, visit the Ananda Institute.