Tag: research

  • 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.

  • As the days go by…

    As the days go by…

    For the last few days I’ve felt un-motivated. Lethargic. Not depressed but not my usual self. Sure, we’re still in a pandemic. Sure, it’s going to be awhile before I can get the vaccine. Sure, it’s damp weather which is never good for my muscles.

    But, I think the catalyst for this malaise was finding out that a member of my support group died last week. His wife let me know the day after he passed. He and I were never close but we did have a connection.

    The first year of a longitudinal research study I participated in across the country in Rochester, New York, he also participated in. In fact, I discovered he changed his date of participation to coincide with my visit. At that time, it creeped me out. It was a two-night hospital stay with lots of diagnostic testing and a muscle biopsy. The last thing I was interested in was making a new friend.

    He apparently never felt rebuffed and continued to seek my friendship in and out of the support group. In fact, he even photographed my wedding, in 2008, to my female partner. This may have been a stretch for him since I assumed him to be of a different political persuasion than myself. This was before 2011 when marriage equality was federally granted; hearts and minds still weren’t quite ready yet.

    Over the years I met his wife, and adult children, and felt a kinship with him though in the last few years I had a difficult time understanding his speech and he wasn’t keen on communicating via email or Facebook. But, I considered him a friend. Occasionally, he’d ask me questions related to my experience with specific myotonic dystrophy (DM1) symptoms.

    During the pandemic I started doing virtual support group meetings every two weeks. He never joined but I assumed he got his support from his family which now included a few grandchildren.

    When his wife messaged me, I wasn’t surprised. I was sad but in the last few years I’ve seen many of my support group members — and larger international community of DM1 friends — pass away. Mostly due to respiratory complications. I’m somewhat numb to it.

    Since this man wasn’t much older than myself, I can’t help but experience his loss partially as a nail in my coffin. I responded to his wife with an appropriate response but I had to make sure she knew about the BioBank at our local research university. I know this was of great solace for other families when they lost their loved one so I have to assume others may find it useful.

    And so, life goes on. Days pass and I feel more alive than having one foot deep six.

  • 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…

    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.
  • 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!

  • 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