A seated Tai Chi practice can have both physical and emotional health benefits.

Interview with Ralph Somack, PhD — Tai Chi Instructor

Tai Chi instructor, Ralph Somack, has taught tai chi to seniors, people with dementia, stroke survivors, people using wheelchairs and this week begins to teach a seated tai class to people who are blind or visually impaired. Somack, an octogenarian, continues to take on new challenges of modifying tai practices such as qigong, bagua, and Xing Yi for those who want to alleviate stress. In addition, Somack has seen his students benefit from increased self-esteem, ambidexterity, an Increased awareness of themselves as well as others, and a sense of where they are in time and space. To register for Somack’s online classes sponsored by BORP, visit this webpage for the Tuesday 10 am Pacific Seated Tai Chi class or here for the new Tai Chi class for Blind and Visually Impaired Participants on Wednesdaya at 10:30 am Pacific. You can watch videos of Somack’s classes. Here is an earlier Glass Half Full podcast episode about qigong and a short video about qigong.

Karen Bell, a retired software engineer living in Petaluma, CA has a conversation with Leslie Krongold, Host of the Glass Half Full Podcast, about her cancer journey. Two years since Karen’s cancer diagnosis and experience with cancer treatments and support groups, she knows “everyone’s cancer journey is different.” Together they share their thoughts about facing mortality.

Karen Bell talks about how each person’s cancer journey is different.

Earlier podcast episodes discussed in their conversation are End of life and The Power of Prayer.

Link to Podcast Audio

An episode to catch everyone up on what’s been going on in the life of someone in their early 60s with a progressive health condition. Waning energy prohibits many of us from reaching all of the goals we’d like to achieve. It takes time to acclimate to a new normal and reassess which goals are most important and how best to achieve them dealing with new limitations. Foremost for someone with myotonic dystrophy, like myself, is getting enough sleep so I have energy to maintain a regular movement practice even with shifting mobility.

The annual May Movement Challenge I’ve produced for the last three years will change. To stay current, join the Movement Challenge Facebook group. If you live near the north coast of California, or plan to visit, check out a new local program – Leslie’s Accessible Walks.

If you’re a first-time listener, check out this episode: https://glasshalffull.online/my-first-podcast-001-who-am-i-who-are-you/

My guest for this Glass Half Full podcast episode is Patrick Regan. Patrick is a young man living in Alaska with SMA (spinal muscle atrophy) who uses AAC to communicate. We’ve gotten to know each other through online BORP classes — Tai Chi and Pilates.

Our communication previous to our Zoom podcast recording was through Zoom’s chat. Patrick is not able to speak and uses technology to communicate via text or assisted speech.

Our podcast recording was the first time I actually saw him live since he usually has a photo of himself in the Zoom window. And he varies the photos so I’ve seen him dressed up for different themes especially in the Rumba with Tina dance class.

Anyhow, Patrick has proven himself to be quite tech savvy and I wanted to learn more about the AAC (Augmentative and Alternative Communication) he uses.

To watch this recording on YouTube, click here.

I don’t know who coined the term movement is medicine, but it resonates for me. My early experiences with exercise were not joyful; grade school physical education was bad medicine. But once I started dancing with friends in high school – before carding and ID checks were mandatory – I experienced movement in a positive way. Shortly after college I started a yoga practice which was medicine for my body and mind.

In this podcast episode I tell my story of what led up to the 2021 launch of the May Movement Challenge — a month of free online movement classes that are meant to be accessible and adaptive for anyone and everyone.

You’ll also hear from Natalie Graniela – one of the several movement instructors participating in the annual May Movement Challenge. Natalie talks about her gyrokinesis movement practice and working with seniors as well as people with different bodies and abilities.

Natalie in chair doing gyrokinesis
Natalie Graniela and Gyrokinesis

For more information visit the website: https://maymovementchallenge.com,  register for this year’s month of free online movement classes: https://us02web.zoom.us/meeting/register/tZMvd-yhrDsrGNB8RbtdI8mhTYG-_BUJ90mB,  and join the Facebook group: https://www.facebook.com/groups/166227591989420

Most of the episode’s transcription:

If you don’t know my story, the short version is that I discovered, I have a rare genetic condition called myotonic dystrophy when I was 36 years old. Discovered because my family – on my mother’s side – didn’t realize that the reason several of the 9 offspring of Albert and Victoria Tarallo died from sudden heart failure in their 50s was due to a condition originally called Steinert’s disease – after some German scientist who identified the genetics – and at some point was inaccurately re-named myotonic dystrophy because of the what most of us consider to be one of the minor symptoms of a multi-systemic disorder. The more major symptoms are debilitating weakness and fatigue which eventually progresses to respiratory problems, heart electrical problems, GI problems, and the use of mobility devices.

         Right now, there is no treatment for the overall condition but there’s the use of a plethora of drugs to treat some of the symptoms. I’ve chosen to limit my pharmaceutical intake and have for much of the last 25 years relied on lifestyle choices – things that are within my control – to mitigate my symptoms. Those lifestyle choices include my diet, my exercise, and my attitude.

         Just for the record, I use a nebulizer daily with albuterol to help my respiratory system. But that’s it for western modalities of medicine.

         My early experiences with EXERCISE, were not joyful. Physical education in elementary school was torture. I grew up in South Florida where I never quite acclimated to the subtropical climate. The PE Teacher – Mr. Stockweather – may have been a Marine although he did drive a mustard-colored VW van so maybe he had a little hippy dippy in him. Everything seemed very competitive, and I was often one of the last kids chosen to be on a team. I was chubby until 4th grade when I went on a self-imposed diet of cottage cheese and yogurt and gave up my love for Chips Ahoy.

         We had Mr. Stockweather from 1st to 6th grade. There were lots of running around a track field, box ball, volleyball, climbing ropes, high jump, long jump, and other modified Olympics events but I don’t think the potato sack racing originated in ancient Greece. The only PE class I enjoyed was the square dancing…and even Mr. Stockweather seemed to enjoy it with his straw hat making the calls…dotsey doe and swing that girl around

         PE classes didn’t improve in middle school with the horrific gym clothes requirement of a white polyester one-piece jumper and having to undress in a crowded locker room. I grew hip to the trick of saying I was having a bad period that lasted for days just to avoid the misery of being out in the hot sun playing softball. None of it was joyful.

         Coming out as gay in high school was hard but the silver lining was getting into discos in the 70s and dancing with friends. Oh my God…it was fun. No one cared how you danced, and it was so good to move to fun music and feel joy. I continued a steady diet of dancing with friends in college and shortly after I graduated, I was introduced to yoga.

         I was maybe 23 years old and took a yoga class at night at a local school. I wasn’t immediately captured but over the years I kept returning to different yoga classes and eventually yoga workshops and conferences. Maybe 15 or so years ago I was in a longitudinal research study at the U of Rochester Neurology department and the Physical Therapist was impressed that my range of movement was remaining steady during my visits over the four years. it was due to my yoga practice. I started telling…anyone who would listen…that yoga was my main treatment modality. Up until COVID, yoga and walking were my main forms of movement. I tried other types of movement too. I worked with a Pilates trainer for a few years, and I remember a tai chi class I tried for a few months but found the arm movement and balance a bit too challenging to derive much enjoyment.

         Gradually my yoga practice had changed. It was challenging to go from a standing pose to reclining on the mat. One teacher made a practice of bringing a chair into the studio for me to use. I wasn’t necessarily embarrassed, but I was starting to realize that even gentle yoga classes were no longer appropriate for me.

         In 2017 I attended my first Accessible Yoga conference and then another one the following year. And then in early 2019, much to my surprise, I took the Accessible Yoga Teacher Training and was delighted to learn all types of modifications for most of the yoga poses I had been able to do earlier in my life. several of the class participants also had some type of health condition that precluded them from regular yoga classes.

         At the time COVID hit I was attending 2 or 3 in-person movement classes each week. I loved these for the physical and emotional benefits as well as for the sense of community they provided for me. Not having access to them was devastating to me because I knew my physical and emotional homeostasis depended on these movement practices.

         I can’t recall which came first but the organization BORP – Bay Area Outreach for Recreational Programs – jumped to the internet with classes like Rumba with Tina or Strength Training with Raye Kahn. Through other class participants I was introduced to Dance for all bodies and the Wheelchair Dancers Organization – all three organizations providing accessible and adaptive online movement classes taught by differently-abled instructors. It was incredible and made COVID bearable.

         One of my annual traditions had been attending the Abilities Expo in Northern California – which is a national event showcasing vendors and resources of interest to the disability community. I saw that they were going virtual, so I pitched the idea of a presentation about my exercise journey. You can view that presentation. The Expo organizers told me the recorded presentation was well-received and viewed by many. From that experience was the genesis for the May Movement Challenge in 2021.

         What is the May Movement Challenge, you ask? It’s a month of free online movement classes that are meant to be accessible and adaptive for anyone and everyone. Many of the instructors are familiar with teaching students with varying levels of abilities while some are new to our community.

         I have a few goals with this project – (1) introduce fun movement practices to people who might not otherwise know about adaptive exercise programs; (2) help instructors who are teaching online find a new audience; and (3) expose movement instructors to ways of providing modifications to their movement instructions so that others may benefit as well.

         I’ve been impressed with what organizations like BORP, WDO, and Dance for all bodies has done. I know there are other organizations like them but are they online, are they marketing to the larger community outside of their city, region, or country? With Zoom you can adjust the language in the scrolling captions and this feature has really improved through COVID. Although instructors will speak English – since it’s the only language I speak – their words can be simultaneously translated on the screen for any user. That is cool!

         I forgot to mention…I intentionally use the word MOVEMENT rather than exercise. Maybe it’s semantics…but…I had a negative experience with exercise in my youth. Movement encompasses more than exercise. Working in your garden, using the vacuum in your home, folding the laundry…these are all types of movement…and they’re all good for you.

         Early on in COVID I was introduced to a movement practice called Gyrokinesis. In an email from the Alameda Senior Center there was an announcement for a free gyrokinesis class. I registered, loved the class, and was surprised to find out the instructor, Natalie Graniela, lives in New York City. Who knew how long COVID would last and how the whole idea of online movement classes would continue? I’m grateful that the major scourge has dissipated but thrilled that online movement classes are here to stay. And I continue taking weekly gyrokinesis classes with Natalie.

         Natalie participated in the first two May Movement Challenges and I recently met her in person for the second time. Natalie was a professional dancer with the Erich Hawkins Dance Company and is a trainer in gyrokinesis and gyrotonics. She also has years of experience teaching balance, postural therapy, and exercise workshops for the Arthritis Foundation, NYC dept for the Aging, and a variety of senior centers. Here is our conversation:


         Are you ready to participate in this year’s May Movement Challenge? You can register as a participant, or fill out a form to be an instructor, at the website.

         As a participant you’re registering to attend Saturday sessions. When the weekly class schedule is ready, you’ll receive it through email. Both the Saturday sessions and weekly classes are free; just register with your name and email address.

         Movement classes will cover a wide range employing all types of exercise – flexibility, balance, strength, and endurance, or cardiovascular. Each class is 45-minutes long.

         Saturday sessions are one hour and include an interactive presentation by a movement instructor on a specific topic, sharing of someone’s personal journey with movement and how it’s helped them physically or emotionally or both. And there will be a random drawing for a prize. In the past prizes have included tickets to online comedy shows, gift certificate with a movement trainer, and a food package from Daily Harvest. You must be present to win.

         I hope you’ll spread the word about the May Movement Challenge, join our Facebook group, and move with us through the month of May.

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

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

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

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

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.