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.

When you’re told you have a tumor the size of a grapefruit growing in your brain, and you have it removed, and you live to tell the story about it without experiencing profound disability, then you have a lot to be grateful for.

That’s what happened to Amy. Learn more about Amy’s health story in this podcast episode. She had no idea about a brain tumor until family members made an intervention and tests revealed the source of her various symptoms which taken individually caused no alarm for Amy.

‘Tis the season to be grateful. And Amy is grateful for much. What are you grateful for?

In the latest AARP magazine Michael J. Fox talks about how gratitude is a source for his continued optimism in spite of having to give up acting because of unreliable speech.

The UC-Berkeley Center for the Greater Good explores the concept of gratitude with evidence-based research. Check out articles and video clips here.

An earlier podcast episode, Gratitude & Thinking Small, includes an interview with noted author and Buddhist practitioner, Toni Bernhard.

Traditionally the month of October is the time to become aware of people with disabilities — either a visible or invisible disability — but here we’re drawing attention to all those who face physical and mental health challenges. With 1 in 10 Americans diagnosed with a rare disorder (whether it’s a visible or invisible disability) and all of the others making up ~ 25% of Americans with chronic health conditions, let’s practice an awareness on a daily basis.

Sunny Ammerman, NORD Ambassador for Indiana, talks about spoon theory, her role as a Patient Advocate for NORD and the Pituitary Network Association, and her blog, Insomnia Doodles.

Earlier podcast episodes have explored Disability Awareness — The D Word and The Pirate as a Disability Action Figure. To learn more about Rare Disease, listen to this podcast episode, It’s Not That Easy Being Rare.

Sunny is an avid gamer and Virtual Reality enthusiast; stay tuned for a future episode where she shares her love of VR.

What is that growing on me — could it be skin cancer? Have you asked yourself this question? During the pandemic I ignored a couple of what I thought were pimples because I was terrified to go inside a building. According to Wikipedia…

Squamous cell carcinoma of the skin is usually not life-threatening, though it can be aggressive. Although the nonmelanoma skin cancer basal cell carcinoma (BCC) is rarely life-threatening, it can be troublesome, especially because 80 percent of BCCs develop on highly visible areas of the head and neck.

Mayo Clinic

Apparently I have, or had, both. After a few biopsies, a topical chemotherapy treatment, and now Mohs surgery, I hope this closes a chapter. Yet it seems nearly inevitable that there will be a recurrence. And thus my education on this topic is in its genesis.

A few takeaways from this experience — don’t leave the house without sunscreen protection and learn more to successfully advocate for myself.

Here’s an entry from a chronic illness blogger about her ordeal with skin cancer.

Falls don’t always happen when you’re standing. Although balance and fall prevention classes help increase your odds of preventing a near fall, some falls are just unusual accidents. Like sitting in a chair where the seat gives way and your derriere hits the ground. That’s one unusual fall.

Fortunately, movement and flexibility classes improve your chances of diminishing the impact of the fall.

For more information on Balance and Fall Prevention, listen to this podcast episode with UCSF Physical Therapy Professor, Erica Pitsch.

The Mat Pilates class offered by BORP is described as: Designed by and for people with spinal cord injuries but open and beneficial to all, the Adaptive Pilates Mat Class is a unique class essential for those that sit in a chair all day and are able to get  up and down off of the floor or have access to a raised mat.  Liz Ann will lead the class through the basic principles of Pilates, helping you to get stronger, more flexible and even to have improved coordination. Pilates also uses specific sequential breathing methods combined with intense concentration on a specific body part to create an effective exercise routine.

To find out about other adaptive/accessible online movement classes, join the Facebook group: Movement Challenge.