Over the past month there’s been some chatting — with a Professional Patient and a few virtual friends sharing how they cope with the holidays.

I noticed a Facebook posting from a high school classmate identifying himself as a professional patient so naturally I was intrigued. In this video I ask David Weiss all about his 11 years of experience as a professional patient which includes giving feedback to first- and second-year medical school students, participating in tests doctors must take before the Florida state boards, and teaching doctors how to give a male examination using his own penis and prostate.

If you missed the December podcast, you’re welcome to listen or watch it on YouTube; the participants did dress quite festively. Joining me are Andrea Klein with collagen 6 congenital muscular dystrophy, Janice Laurence with Charcot Marie Tooth neuromuscular disease, and Roma Leffmann who advocates for people with acquired disabilities as a stroke survivor. Together we discuss everything from dysphagia, incontinence , single life, ableism, and gifting.

When to stop driving a moving vehicle? That is the question to ponder; is it a toss up between being a responsible adult or maintaining a sense of independence? For many people, this is a difficult choice. If you live in an urban or suburban location you may have many options available if you give up driving. For others, a car may be a necessity — one needed to get to gainful employment, purchase groceries, or use to transport family members more disabled than yourself.

Podcast Host Preparing to Be Responsible and Less Independent

In this academic paper, physicians discuss health conditions that predispose patients for difficulties with tasks required for driving a car safely. People with Alzheimer dementia, epilepsy, visual impairments, sleep apnea syndrome, cardiac dysrhythmias, substance dependency, and neurological disorders with a cognitive component are at risk.

In this MDA Engage recorded webinar, the presenter shares this factoid — For every mile driven there are 20 decisions that need to be made and less than ½ second to react.

This podcast episode explores the decision-making process for podcast host, Leslie Krongold, as well as for guest, Keisha Greaves. Both chose to give up driving before a doctor told them to.

If you, or a loved one, are concerned about your current driving skills, take this online assessment to gauge whether or not you should explore driving options.

Each U.S. state has unique laws regarding senior and/or drivers with specific disabilities; check what your state has on the books.

If you’re a caregiver in search of advice for your loved one, check out this U.S. Dept of Transportation website.

Apparently last year, and the year before, I didn’t blog or do a podcast episode relevant to Thanksgiving. I want to make up for that…because…I am grateful for a lot! I often express gratitude in response to something difficult I’m experiencing.

Moving to Mendocino in August of 2021 was a huge transition. So much intense preparation with sorting and packing through 20 years of stuff. Saying goodbye to friends, familiar locations, a healthcare infrastructure, and more.

There were many obstacles to hurdle. I had a series of falls which led me to become a user of walkers, wheelchairs, and scooters. Emotional upheavals in my personal life. But with all of these I would try my best to tap into the good things…the here & now where I was safe in my new home, surrounded with love from my partner and cat family, and living in a natural paradise of Redwood Forests and Pacific ocean cliffs.

It is hard, though, to problem-solve a physical and/or emotional challenge and stay in that place of gratitude. Are there really people who have mastered this? Or, have they not been faced with some pretty hefty challenges? I think one of the key skills I’ve learned over my life is to not feel like a victim. Everyone’s got their stuff to work through. Having a sense of humor helps. As does being aware of others and their painful struggles. Developing a sense of empathy. Being a witness to others pain.

But does this have anything to do with gratitude? In my rambling mind it does. My mind right now is a little different. My mind or brain fog? Big news — after 2.5+ years of being cautious and well-vaccinated and boosted, I tested positive for COVID last weekend. It was surreal.

Over the last few months we’ve gradually become more carefree by eating in restaurants. We’ve entertained but have made a rapid-testing protocol for visitors to our home. After the third booster I felt like it was okay to unmask at an event with good cross ventilation. I was having fun. I did have fun with all of those Zoom parties back in 2020…but…I missed being with people. So I’ve been rejoicing lately; feeling grateful for new friends here in my new home.

1960s Dance Party

On Saturday I received an email from a member of our local Jewish community that several people at a dinner party I had attended, tested positive for COVID. There were close to 100 of us at a restaurant for a closed party; everyone had pre-tested. But, something apparently went wrong. It’s bigger than just our community; the schools on the Coast closed due to the outbreak.

So here I am with….ssshhhh…COVID. I feel like a pariah walking around the house masked but grateful that my partner tested negative. I’m grateful for the vaccines and boosters because this situation could have been so much worse off for me. Do you remember how many people died? I’m a little miserable yet grateful too. How do I juggle this paradox?

The doctor quickly prescribed Paxlovid which is free. To my surprise, the 3 pills 2x/day are big and the directions with the medicine and on the Pfizer website stress, “do not chew, break, or crush.” Hello!? What about those of us with dysphagia? Do you know how many people — doctors, friends, strangers — thought they were suggesting a novel concept of “applesauce?” Crushing pills in applesauce helps but my throat muscles aren’t fools; they know a big hunk of hardness from mush.

And so, I guess I’m grateful to still have a little spunk in me to consider this a new crusade for me and Big Pharma. I posted in a dysphagia support group on Facebook and one woman, who has a feeding tube, shared her story of calling Pfizer; they have no intention of creating a liquid form of the drug. I am grateful to align with others to shed light on this health inequity. Oy!

I guess this was a bit of a Thanksgiving Rant. Here are a number of things I am TRULY grateful for:

  • My life partner, Jessica, who tries her damnedest to take care of me with wonderful food, nightly foot massages, and a kindness and generosity that is unparalleled.
  • My 87-year old father who has mellowed over time and actually texted me after the Colorado Club Q hate crime warning me to not go to gay clubs because they’re not safe. Ahh, my clubbing days are long over but thanks for thinking I even had that inclination.
  • All of our cats for doing all the cute and annoying things you do. Especially Chiquita who lives to be rubbed only by me.
  • All of the wonderful friends I am making in Mendocino, Fort Bragg, and Ukiah who have helped me feel part of a community. Especially the Jewish community, even though I got COVID. The seed was planted 30 years ago when I made a documentary which brought me up here for the first time. Was it fate? I am just so grateful to be here.
  • My book club friends. I’m in four book clubs but the one I started back in 2009 is the anchor. Although we can no longer meet in person and have amazing potluck meals, I still look forward to our monthly discussions.
  • All of my friends who made their way to Mendocino this past March to help me celebrate my 60th birthday. Thank you so much…I have wonderful memories, and photos to remind me if my memory changes.
  • BORP and the individual online movement instructors who have and continue to have a healthy impact on my mind and body. Especially thanks to those of you who support my annual May Movement Challenge.
  • My fellow myotonic dystrophy friends — those with DM1, DM2, and caregivers — we continue to learn from each other. A special shout out to the DM1 adults who participate in my monthly 50 years and older group. I cherish that we are growing closer with each meeting.
  • The colder climate of this North Coast area. Not only are you beautiful but you’re CHILL!

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


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.

The lyrics to Don’t Laugh at Me speak to anyone who has felt like an outsider. Whether or not you were bullied as a child, this song will likely resonate with you. Steve Seskin, the singer-songwriter, and his co-writer were first inspired by a young girl’s experience of teasing in grade school. But, the song encompasses inequities experienced by those living with physical and developmental disabilities as well as people experiencing hard times.

A few months ago I [Leslie] first heard the song in the online dance class, Rumba with Tina. Many of the other virtual dancers were familiar with it and sang along. I just cried. After the class I googled the song title and discovered I knew the songwriter. Steve’s wife, Ellen, has been a participant in the Northern California Myotonic Dystrophy Support Group I facilitated. What a small world!

Steve’s songs have been recorded by recording artists such as Garth Brooks, Reba McEntire, Waylon Jennings, Tim McGraw, Colin Raye, and Mark Wills. Visit Steve’s website to learn more about his music and check out the organization Steve is involved with: Operation Respect.

Liz Ann Kurdrna, Pilates instructor, feels like her emotional recovery from a rock climbing injury is ongoing yet “knowing that I have to show up for someone else…by teaching…it helps. It helps you uncover the stronger part of yourself.”

In this podcast episode, Liz Ann talks about her lifelong love of rock climbing as well as her participation in other outdoor activities such as swimming, snow skiing, and cycling. In Montana, where she’s lived for the past 20+ years, she teaches online and in-person Pilates. Liz Ann has competed in local Triathlon events with the Challenged Athletes Foundation.

In this video Liz Ann demonstrates a few Pilates Breathwork exercises.

To learn more about Liz Ann’s online classes, check her website. You can register for her Seated Pilates class sponsored by BORP.

Glenn Ribotsky, a Board member with the Western Neuropathy Association, shares his dramatic initiation as a patient into the world of peripheral neuropathy. Now, 18 years later he advocates and offers support to others experiencing the often, invisible pain of a neuropathy.

Other organizations focused on research and support for those with a neuropathy include the Foundation for Peripheral Neuropathy and the Neuropathy Action Foundation.

For those of you that came here looking for a photo mentioned in the podcast, it will turn up. Check back in a week. Thanks!


I’m actually one of those people. I’m fortunate in that I can actually distinguish, in my case the symptoms, and I’ll talk about why among different types of neuropathy. But I have problems where I have cervical spine impingement on my spinal cord, but I also have peripheral neuropathy. The impingement from the cord, though, tends to create symptoms that are much more localized because it said certain levels of the spine, in my case from C5 to C 7. In terms of that nomenclature, those symptoms are basically neck backs of shoulders and down the arms, whereas the more systemic peripheral things are body wide and the symptoms also are somewhat different. I mean, I get more typical compressive symptoms out of the cervical spine stuff as opposed to the other small fiber neuropathy. I have and define those terms for people, which is much more of a burning pain.

Maybe you were part of last year’s inaugural May Movement Challenge? Here’s a video showing the highlights from a month-long array of free, accessible online movement classes.

This year we have several of the same movement instructors as well as new instructors — all offering their time and talents to help you get excited about a movement practice. Check out this webpage for class schedules and registration information.

New this year are Nature Sundays. In the Movement Challenge Facebook Group you’ll be introduced to movement practice out in nature, such as Forest Therapy. If you’re on Facebook, just join the group for further details.

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.

I remember years ago when I had a Toyota there was a dealership I’d go to regularly for oil changes and other car repair. You know how you drive into a big open space, like a warehouse? Well, there was a huge banner hanging inside that said SMILE. And maybe it had a smiley face. It kind of pissed me off; like it was a command – come here and spend more money than you need to and dammit, you better have a big fat smile on your face as you wait an inordinate amount of time to be waited on by surly people.

And maybe Bobby McFerrin’s song was popular around that time or isn’t that song always in vogue – DON’T WORRY, BE HAPPY! I’ve liked the song; hey, it got everyone to know who Bobby McFerrin is but people in San Francisco knew of him and his leadership in a 24-hour acapella song event at Grace Cathedral on New Year’s Eve. That was something to be happy about.

But I digress. No one wants to be forced to smile or be happy.

A month or so ago I was on a Zoom chat with one of my new Mendocino friends. We’ve bonded over having chronic health conditions. Hopefully you’ll meet her soon. I can’t recall the context, but she used the term toxic positivity. I’d never heard that term before. But I remember it perfectly described what we were talking about.

And then I started seeing the term in other places. You know how that is, something is unearthed and then all of a sudden, it’s everywhere!

So, skip forward to a week or so ago. I was telling someone about a virtual support group I had facilitated. We were sharing coping tools for the holidays which can often be so bittersweet. Especially when you have a chronic health condition and you’re around friends and/or family that just don’t get your condition and challenges.

It was a good meeting. Several of the people in this group have never attended a support group meeting…and are a little shy about sharing. But it was going well until this one gentleman started saying something like how he didn’t understand why people weren’t happy or joyful. He went on to share how his family and friends help him and he’s just jolly jolly jolly. He, I seem to recall, said something to the effect of DON’T BE NEGATIVE, I don’t like all of this negativity.

In my 23+ years of facilitating support groups I have vast experience of dealing with negative people bringing a vibe down but rarely had I experienced this kind of behavior.

It wasn’t a downer meeting…just people honestly sharing what seems to be a difficult time for many people. Like, you don’t have to have a debilitating progressive neuromuscular disease to understand how the holidays are bittersweet for many.

So, as I said, I was sharing this experience with someone in the patient support community, and he said, “you know I think this is an example of toxic positivity.”

According to the Mental Health Association in Delaware:

With toxic positivity, people’s negative emotions and experiences are downplayed and disregarded. Instead, only positive feelings and experiences are encouraged.

Apparently, this has become more of an issue during the pandemic.

The website goes on to say:

Toxic positivity statements can be directed towards others, stated by others, and aimed towards oneself. Some signs of toxic positivity statements may be dismissing emotions, minimizing someone’s experience, giving one’s perspective instead of validating someone’s emotions, shaming someone for expressing frustration, and brushing things off. Some examples include:

  • “Just get on with it.”
  • “It could be worse.”
  • “It is what it is.”
  • “Don’t worry, be happy!”
  • “Positive vibes only!”

Did you hear that one Mr. Bobby McFerrin?

Okay, I am guilty of using the statement “It is what it is.” But in defense, I’ve used this for minor setbacks like when our cat Abner knocked over our tree and some precious ornaments broke. I was mad for a little bit but my partner was sad and cried. I said It is what it is.

A more compassionate response, as I’ve learned, would have been:

  • “I see you, and I’m here for you.”
  • “Describe what you’re feeling, I’m listening.”
  • “This is really hard, I’m thinking of you.”
  • “Failure is a part of growth and success.”
  • “I see that you’re stressed, is there anything I can do?”

But what about the support group? How do I handle the perpetrator of the toxic positivity when it’s not me?

I think I mentioned to Mr. Positive in Your Face how I’m a big proponent of positivity – after all, I have a podcast called Glass Half Full – but it’s also very common to have a difficult time with the holidays. I cut him off too…because…wouldn’t you know, Mr. Positive attempted to dominate the conversation. I wonder if he listens to my podcast. Hmmm.

In addition to the website for the Mental Health Association in Delaware another high ranked Google search result was a podcast on KQED. The episode focuses on teachers who have had a particularly rough time during the pandemic – having to change curriculum for remote learning, having a hybrid setup with in-person teaching on one day and remote the next day as well as having real fears of dying and/or separation from their child if exposed.

In some communities’ teachers were force-fed positive phrases and instructed to do breathing exercises. One woman talks about being shown a TED talk with psychologist Kelly McGonigal talking about making stress your friend. The podcast narrator defines toxic positivity as focusing on the positive and ignoring the negative. This mindset has caused a lot of teachers to feel guilty, stressed, and overwhelmed.

Ironically, McGonigal is one of the psychologists often featured on one of my favorite websites – the Greater Good Science Center at UC-Berkeley. I decided to see what articles The Center had about toxic positivity. The search results displayed one with the entire phrase; there were many results for “toxic” or “positivity.” The one result was a comment from someone in response to a “Finding Silver Linings” practice. The truncated comment included, “I do wonder how this process starts touching on the territory of toxic positivity. When we’re frustrated and discouraged, how can we own the feelings and…”

So, toxic positivity has not yet merited much attention from the Greater Good Science Center. Interesting.

I know how hard it is to hear about someone’s suffering. Even if you are compassionate, you might not know what to say. And often there isn’t any magic phrase to ease their discomfort; maybe they just want to be heard, or witnessed?

But let’s all agree…when we’re hurting there isn’t anyone that can whisper a few words to snap you out of it. DON’T WORRY, BE HAPPY! Wow, if that worked we’d have no need for psychologists, therapists, counselors, alcohol….You get the point.

I’m still all about tools and resources to help manage difficult physical and emotional issues. But sometimes you need to sit with something and wait and find the right path out.

So during this holiday time, please be gentle with yourself as well as others. If someone is hurting, ask them if you can help but don’t assume that what works for you will work for them like a magic pill.