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 for 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 <a title= "Facebook group" href= "https://www.facebook.com/groups/166227591989420" target="_blank" rel="noopener">Movement Challenge Facebook</a> group. If you live near the north coast of California, or plan to visit, check out a new local program – <a title="Leslie's Accessible Walks" href= "https://glasshalffull.online/leslies-accessible-walks/" target= "_blank" rel="noopener">Leslie’s Accessible Walks</a>.

<description>&lt;p class="MsoNormal"&gt;&lt;span style="font-size: 15.0pt;"&gt;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 for reaching all of the goals we’d like to achieve. It takes time to acclimate to a &lt;em&gt;new normal&lt;/em&gt; 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.&lt;/span&gt;&lt;/p&gt; &lt;p class="MsoNormal"&gt;&lt;span style="font-size: 15.0pt;"&gt;The annual &lt;em&gt;May Movement Challenge&lt;/em&gt; I’ve produced for the last three years will change. To stay current, join the &lt;a title= "Facebook group" href= "https://www.facebook.com/groups/166227591989420" target="_blank" rel="noopener"&gt;Movement Challenge Facebook&lt;/a&gt; group. If you live near the north coast of California, or plan to visit, check out a new local program – &lt;a title="Leslie's Accessible Walks" href= "https://glasshalffull.online/leslies-accessible-walks/" target= "_blank" rel="noopener"&gt;&lt;em&gt;Leslie’s Accessible Walks&lt;/em&gt;&lt;/a&gt;.&lt;/span&gt;&lt;/p&gt;</description>

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 for reaching all of the goals we’d like to achieve. It takes time to...

Wuzzup: Growing older with a progressive health condition

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 <a title= "Podcast interview with Pilates instructor" href= "https://glasshalffull.online/uncover-the-stronger-part-of-yourself-%ef%bf%bc/" target="_blank" rel="noopener">Pilates</a>.  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 <a title="Podcast interview with Tina" href= "https://glasshalffull.online/that-is-me-i-still-have-my-hands-positive-energy-during-a-pandemic/" target="_blank" rel="noopener">Rumba with Tina</a> 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.

<description>&lt;p class="MsoNormal" style="line-height: 150%;"&gt;&lt;span style= "font-size: 16.0pt; line-height: 150%; font-family: Roboto;"&gt;My guest for this &lt;em&gt;Glass Half Full&lt;/em&gt; 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 &lt;a title= "Podcast interview with Pilates instructor" href= "https://glasshalffull.online/uncover-the-stronger-part-of-yourself-%ef%bf%bc/" target="_blank" rel="noopener"&gt;Pilates&lt;/a&gt;. &lt;/span&gt;&lt;/p&gt; &lt;p class="MsoNormal" style="line-height: 150%;"&gt;&lt;span style= "font-size: 16.0pt; line-height: 150%; font-family: Roboto;"&gt;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.&lt;/span&gt;&lt;/p&gt; &lt;p class="MsoNormal" style="line-height: 150%;"&gt;&lt;span style= "font-size: 16.0pt; line-height: 150%; font-family: Roboto;"&gt;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 &lt;a title="Podcast interview with Tina" href= "https://glasshalffull.online/that-is-me-i-still-have-my-hands-positive-energy-during-a-pandemic/" target="_blank" rel="noopener"&gt;Rumba with Tina&lt;/a&gt; dance class.&lt;/span&gt;&lt;/p&gt; &lt;p class="MsoNormal" style="line-height: 150%;"&gt;&lt;span style= "font-size: 16.0pt; line-height: 150%; font-family: Roboto;"&gt; &lt;/span&gt;&lt;span style="font-size: 16.0pt; line-height: 150%; font-family: Roboto;"&gt;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.&lt;/span&gt;&lt;/p&gt;</description>

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...

What is AAC (Augmentative and Alternative Communication)?

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 senior adults as well as people with different bodies and abilities. For more information visit the website: <a href= "https://maymovementchallenge.com">https://maymovementchallenge.com</a>,  register for this year’s month of free online movement classes: <a href= "https://us02web.zoom.us/meeting/register/tZMvd-yhrDsrGNB8RbtdI8mhTYG-_BUJ90mB"> https://us02web.zoom.us/meeting/register/tZMvd-yhrDsrGNB8RbtdI8mhTYG-_BUJ90mB</a>,  and join the Facebook group: <a href= "https://www.facebook.com/groups/166227591989420">https://www.facebook.com/groups/166227591989420</a>

<description>&lt;p class="MsoNormal"&gt;&lt;span style="font-size: 16.0pt;"&gt;I don’t know who coined the term &lt;em&gt;movement is medicine,&lt;/em&gt; 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 &lt;em&gt;medicine&lt;/em&gt; for my body and mind.&lt;/span&gt;&lt;/p&gt; &lt;p class="MsoNormal"&gt;&lt;span style="font-size: 16.0pt;"&gt;In this podcast episode I tell my story of what led up to the 2021 launch of the &lt;em&gt;May Movement Challenge&lt;/em&gt; -- a month of free online movement classes that are meant to be accessible and adaptive for anyone and everyone.&lt;/span&gt;&lt;/p&gt; &lt;p class="MsoNormal"&gt;&lt;span style="font-size: 16.0pt;"&gt;You’ll also hear from Natalie Graniela – one of the several movement instructors participating in the annual &lt;em&gt;May Movement Challenge&lt;/em&gt;. Natalie talks about her gyrokinesis movement practice and working with senior adults as well as people with different bodies and abilities.&lt;/span&gt;&lt;/p&gt; &lt;p class="MsoNormal"&gt;&lt;span style="font-size: 16.0pt;"&gt;For more information visit the website: &lt;a href= "https://maymovementchallenge.com"&gt;https://maymovementchallenge.com&lt;/a&gt;, &lt;span style="mso-spacerun: yes;"&gt; &lt;/span&gt;register for this year’s month of free online movement classes: &lt;a href= "https://us02web.zoom.us/meeting/register/tZMvd-yhrDsrGNB8RbtdI8mhTYG-_BUJ90mB"&gt; https://us02web.zoom.us/meeting/register/tZMvd-yhrDsrGNB8RbtdI8mhTYG-_BUJ90mB&lt;/a&gt;, &lt;span style="mso-spacerun: yes;"&gt; &lt;/span&gt;and join the Facebook group: &lt;a href= "https://www.facebook.com/groups/166227591989420"&gt;https://www.facebook.com/groups/166227591989420&lt;/a&gt;&lt;/span&gt;&lt;/p&gt;</description>

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...

Why is Movement my Medicine?

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 <a href= "https://rarediseases.org/" target="_blank" rel= "noreferrer noopener">website</a>. 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, <a href= "https://glasshalffull.online/its-not-that-easy-being-rare/" target="_blank" rel="noreferrer noopener">It’s not that easy being rare</a>, <a href= "https://glasshalffull.online/rare-disease-and-the-need-for-research/" target="_blank" rel="noreferrer noopener">Rare disease and the need for research</a>, and <a href= "https://glasshalffull.online/rare-and-invisible-disability-spoon-theory/" target="_blank" rel="noreferrer noopener">Rare and invisible disability + spoon theory</a>. Check this <a href= "https://raredisease.powellcenter.med.ufl.edu/about-us/helpful-links/podcasts/#:~:text=Rare%20in%20Common%20is%20a,%2C%20healthcare%20professionals%2C%20and%20researchers" target="_blank" rel="noreferrer noopener">webpage</a> for a list of other podcast programs related to rare disease.

<description>&lt;p&gt;&lt;!-- wp:paragraph --&gt;&lt;/p&gt; &lt;p&gt;February 28&lt;sup&gt;th&lt;/sup&gt; 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 &lt;a href= "https://rarediseases.org/" target="_blank" rel= "noreferrer noopener"&gt;website&lt;/a&gt;.&lt;/p&gt; &lt;p&gt;&lt;!-- /wp:paragraph --&gt; &lt;!-- wp:paragraph --&gt;&lt;/p&gt; &lt;p&gt;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.&lt;/p&gt; &lt;p&gt;&lt;!-- /wp:paragraph --&gt; &lt;!-- wp:paragraph --&gt;&lt;/p&gt; &lt;p&gt;For earlier podcast episodes related to rare disease, &lt;a href= "https://glasshalffull.online/its-not-that-easy-being-rare/" target="_blank" rel="noreferrer noopener"&gt;It’s not that easy being rare&lt;/a&gt;, &lt;a href= "https://glasshalffull.online/rare-disease-and-the-need-for-research/" target="_blank" rel="noreferrer noopener"&gt;Rare disease and the need for research&lt;/a&gt;, and &lt;a href= "https://glasshalffull.online/rare-and-invisible-disability-spoon-theory/" target="_blank" rel="noreferrer noopener"&gt;Rare and invisible disability + spoon theory&lt;/a&gt;.&lt;/p&gt; &lt;p&gt;&lt;!-- /wp:paragraph --&gt; &lt;!-- wp:paragraph --&gt;&lt;/p&gt; &lt;p&gt;Check this &lt;a href= "https://raredisease.powellcenter.med.ufl.edu/about-us/helpful-links/podcasts/#:~:text=Rare%20in%20Common%20is%20a,%2C%20healthcare%20professionals%2C%20and%20researchers" target="_blank" rel="noreferrer noopener"&gt;webpage&lt;/a&gt; for a list of other podcast programs related to rare disease.&lt;/p&gt; &lt;p&gt;&lt;!-- /wp:paragraph --&gt;&lt;/p&gt;</description>

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 .   This podcast episode catches up with Aditi Kantipuly, a physician and advocate,...

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

The holidays can be difficult for most anyone but if you live with a chronic health condition and/or physical disability, the barriers to joy and festivity may increase. Four women engage in conversation about coping with the holidays -- Leslie Krongold with myotonic muscular dystrophy, 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 they discuss issues related to #dysphagia #celiacdisease #incontinence #osteoporosis #singlelife #disability #myotonic #musculardystrophy #respiratoryproblems #stroke #adaptivefitness #dance #glutenfree #ableism #gifting #mobility and, of course, #coping

<description>&lt;p&gt;The holidays can be difficult for most anyone but if you live with a chronic health condition and/or physical disability, the barriers to joy and festivity may increase. Four women engage in conversation about coping with the holidays -- Leslie Krongold with myotonic muscular dystrophy, 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 they discuss issues related to #dysphagia #celiacdisease #incontinence #osteoporosis #singlelife #disability #myotonic #musculardystrophy #respiratoryproblems #stroke #adaptivefitness #dance #glutenfree #ableism #gifting #mobility and, of course, #coping&lt;/p&gt; &lt;p&gt; &lt;/p&gt;</description>

The holidays can be difficult for most anyone but if you live with a chronic health condition and/or physical disability, the barriers to joy and festivity may increase. Four women engage in conversation about coping with the holidays -- Leslie...

Coping with the Holidays

This podcast features people with chronic health conditions as they share their positive coping tools and practitioners of mind-body and/or alternative health who have helped people with a chronic health condition.

Glass Half Full with Leslie Krongold, Ed.D.

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