Podcasts about mser

Sezon 4, Bölüm 36: Cumhuriyetin 100. Yıl coşkusuyla başladığımız bölüm hiç beklemediğimiz yerlere geldi. Meğer biz ne dolmuşuz, ne şişmişiz be sıkı Lafolacılar. https://instagram.com/lafolapodcast

Gündemin öne çıkan gelişmeleri Demet Bilge Erkasap'ın hazırlayıp sunduğu Kısa Dalga Bülten'de…

Substantiv

Selam fularsızlar. En son yaptığımız e-demokrasi sohbeti hakkında içimde kalanlardan oluşan bir ek bölüm bu. Hatırlarsanız, sohbetin sonunda Taylan Yıldız “gelecekte demokrasiden çok umutlu olduğunu” ifade ediyordu. Ben o kadar iyimser değilim. Yerel ölçek ve ulusal ölçekler hakkında bambaşka şeyler düşünüyorum.Bu podcast, Kidly hakkında reklam içerir.Çocukların sosyal ve duygusal gelişimini destekleyen, eğitici ve çook eğlenceli Kidly kütüphanesini, ücretsiz deneme süresiyle keşfetmek için tıklayın.Bölümler:(00:43) Yerel problemler(05:35) "Derdini seveyim"(07:40) Ulusal problemler: Güven(09:03) Ulusal problemler: Para(11:20) Direkt Demokrasi(14:05) Düşünce kuruluşları(15:20) Tahmin pazarları(16:10) Profilleme ve blockchain (17:35) Çare yapay zeka mı?(19:25) Özet ve Patreon teşekkürleriKaynak:De-identify, re-identify: Anonymised data's dirty little secret See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In this episode, Justin has a conversation with fellow 'MSer' Heba Sudeh-Hyder. She explains how it was in the very beginning of her journey with m.s. through to where she is at today.Heba has been able to keep optimistic,  while also working on a dream project she feels she never would have if not for this illness.Her project and new occupation are being an author of children's books. Books that educate and uplift those in her community and beyond.Heba'a booksMaymunah's Musings 3 Book series:How Much Does Allah Love Me? (1)What Did Allah Create For Me? (2)Does Allah Know I'm Sad? (3)And:Rise, O Child of PalestineHere is a link to access Heba's work:https://linktr.ee/HebaSubehHyder?utm_source=linktree_profile_shareAt the time of the recording, her third book had not yet been released.Unfortunately due to an injury, Justin would sustain the day after the recording, he was not able to release this episode or conduct further interviews. Also, he was affected by the same temperatures of heat in his apartment  that sent him to emergency the following night. While conducting this interview he was dealing withbthis heat issue. Thankfully Heba was able to help steer the conversation properly,  and also help with technical issues behind the scenes.Below you will find more information about her in a short bio.Bio:Heba Subeh-Hyder is a resident of Southern California and a wife to a loving husband, and a mother of three wonderful girls. She has a Bachelor's degree in Management and Human Resources from Cal Poly Pomona, where she was actively involved in the Muslim Student Association, and is currently working on another degree in Islamic Studies from California Islamic University. Heba has worked as an Executive Team Leader, Office Manager, led a few Islamic halaqas (study circles), and has spoken on panels aimed at educating the public regarding different topics on Islam. Her passion for the deen is what inspired her to be an author. She aims to nurture our youth's innate belief and love of Allah at a young age and to encourage reflection by taking them on adventures to discover Allah, subhanahu wa ta'ala through His attributes.Also,  we're happy to say that he is now once again conducting interviews. If you would like to be on The Just MS Show, then apply on our website.The Just MS ShowThe Just MS (Multiple Sclerosis) Show, w host Justin Loizos, is a podcast that connects, educates and tries to uplift others living with multiple sclerosis. It provides real-life stories, interviews, and information about DMTs (disease modification therapies) and updates on research developments.Thank you very much for tuning in :)WWW.JUSTMULTIPLESCLEROSIS.COM Links to Spotify & Apple Podcast can be found above at the websote. IG: https://instagram.com/justmultiplesclerosis?igshid=YmMyMTA2M2Y=FB: https://www.facebook.com/JustMultipleSclerosis/

Brooke Pelczynski's life with Multiple Sclerosis is an inspiring example of someone taking their diagnosis and turning it into something great. Most recently, her varied career has led to her working for Marvel Comics!Brooke was undertaking her BFA in Illustration in New York when the fatigue and clumsiness that resulted in a number of ruined artworks was diagnosed as Multiple Sclerosis - at the age of only 21. Although she now feels that MS had crippled her career, Brooke has since used her disease to build a career as an artist, illustrator, and comic-creating multiple sclerosis fighter! As well as her full-time role providing illustrations for MultipleSclerosis.net, her work - in a variety of forms - has been featured by a variety of clients and publications including Yahoo, Momentum Magazine, Hotel Indigo, Lifewire, and many more. Brooke also worked as a story consultant for Marvel's Darkhawk comic series, using her experiences to inform the title character's own journey toward an MS diagnosis. Topics covered in this episode include:Brooke's life before her diagnosis with MS aged only 21How, after feeling like MS had crippled her life as an artist, Brooke was able to use comic art to build her careerThe way that Brooke's work for MultipleSclerosis.net fits around her "Perfect, shitty situation" - and how she always strives to remain creative, even on her worst MS days (MSiest?)How she got involved as a story advisor for Marvel's Darkhawk comics Full show notes and resources at https://fumsnow.com/fums118/See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

If you're connected with Multiple Sclerosis in any way - whether you're a patient, or a caregiver, family member, or loved one of somebody with the disease - it's easy (and NATURAL) to live in the what-ifs. We can all wallow in the negatives - hey, there's a reason why this podcast is called FUMS!But Sue Casey, my guest today, tries to live by a different mantra - "Grab The Happy!"Sue has been living with MS for nearly 50 years. This means that when she was first diagnosed, they didn't have MRIs or any of the procedures that we all experience today. And Disease Modifying Therapies? Forget about it! Even though her neurologist told her to never get married or have children, Sue has lived a full and happy life and as her MS has progressed, she has learned to appreciate the small things. And whenever I speak to her she just exudes kindness and love.As you'll hear, Sue has not had it easy, so her positive attitude is hard-won. And, listening to this, you might not be ready to adopt even the smallest part of this mindset. But at some point, you do have a decision to make, and I hope you'll be inspired by Sue's approach to life with MS.Topics covered in this episode include:Sue's life before MS, her initial symptoms, and the story of her diagnosisHow the diagnostic procedure looked in the time before MRIsSue's limited experience of DMTs The progression of Sue's MS, and how she chooses to look for the positives in her lifeFull show notes and resources at https://fumsnow.com/fums115/ See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Content warning: this episode includes a discussion about Lydia's personal experiences of Primary Progressive MS and her plans with regards to Death with Dignity, aka Suicide.Lydia Emily Archibald is an artist to her core. She was born in Chicago to globe-trotting activist parents, and this laid the foundation for her socially-conscious and politically-motivated artworks, including the creation of large-scale murals. Lydia Emily's work has been featured at gallery shows in Milan, Berlin, Los Angeles, New York, Miami, Washington DC, and San Francisco. After battling cancer, Lydia was diagnosed with Multiple Sclerosis in 2012. She later became a spokesperson for the MS Society, sharing the story of her diagnosis and life with MS and her message of hope for others with the disease.Lydia Emily is the subject of the recent documentary The Art of Rebellion, a feature-length film from Bluprint Films directed by Libby Spears. I think she is an amazing person, living an amazing life, and I'm sure you'll agree.Topics covered in this episode include:How Lydia received her MS diagnosis only TWO YEARS after battling cancer!How she started painting and the different materials she has used instead of canvasesThe political and socially conscious art that Lydia makes, the adaptations that she has made, and the team that supports her in the creation of her large-scale muralsThe symptoms that Lydia and Kathy share, and why Lydia thinks the US Healthcare system is trying to wipe out or "cleanse" the chronically illThe plans that Lydia has in place for her death with dignity, aka suicideInformation about the full-length feature documentary about Lydia, The Art of RebellionFull show notes and resources at https://fumsnow.com/fums114/ See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Böddeker, Michaelwww.deutschlandfunk.de, Forschung aktuellDirekter Link zur Audiodatei

Multiple Sclerosis News Today's multimedia associate, Price Wooldridge reads an article about the portable neuromodulation stimulator (PoNS) device that was approved by the FDA last year to help treat multiple sclerosis gait problems. He also reads “The MSer Who Lay in Bed for 2 Years and Can Now Walk Again”, a column by John Connor. =================================== Are you interested in learning more about multiple sclerosis? If so, please visit: https://multiplesclerosisnewstoday.com/ ===================================== To join in on conversations regarding multiple sclerosis, please visit: https://multiplesclerosisnewstoday.com/forums/

80 li yılların çok az sayıda kadın foto muhabirlerinden Gülümser İşçelebi fotoğraf serüvenini anlattı. Yayının ikinci bölümünde araştırmacı, sosyolog Eda Yiğit'le ​ "Prekaryanın Görünmeyen Özneleri: Pandemi Döneminde Sanatçılar" başlıklı kitabını ve bu çerçevede özellikle fotoğrafçıların konumunu konuştuk.

She's been called "the Maya Angelou of the Millennial generation". Join us for Part 2 of our conversation with the poet, actress, and fellow MSer, Azure Antoinette. We talk about MS, representation, and visibility. Find Azure on Instagram @hello_azureantoinette, Twitter @AzureAntoinette, and her website: azureantoinette.com. Go check out the article to which we refer in the episode: Why Representation Matters When Living with MS You can find us on the web at http://myelinandmelanin.com, Facebook, Instagram, and Twitter @myelinmelanin. You can also subscribe to us on YouTube. Consider supporting us through our Patreon -- http://patreon.com/myelinmelanin. Patrons can gain access to exclusive content, Myelin & Melanin swag & more. Your support helps us offset the cost of maintaining our website, paying for our remote recording technology, music, podcast & merchandise production, and more. As we do not get paid to produce the podcast, these are costs that come out of our pockets. This can often be a struggle. If you enjoy the podcast, please take a minute to leave us a 5-Star rating on Apple Podcasts. Stream the podcast on Apple Podcasts, Spotify, Google Play, and everywhere you listen to podcasts. Peace!

She's been called "the Maya Angelou of the Millennial generation". Join us for Part 1 of our conversation with the poet, actress, and fellow MSer, Azure Antoinette. We talk about MS, representation, and visibility. Find Azure on Instagram @hello_azureantoinette, Twitter @AzureAntoinette, and her website: azureantoinette.com. Go check out the article to which we refer in the episode: Why Representation Matters When Living with MS You can find us on the web at http://myelinandmelanin.com, Facebook, Instagram, and Twitter @myelinmelanin. You can also subscribe to us on YouTube. Consider supporting us through our Patreon -- http://patreon.com/myelinmelanin. Patrons can gain access to exclusive content, Myelin & Melanin swag & more. Your support helps us offset the cost of maintaining our website, paying for our remote recording technology, music, podcast & merchandise production, and more. As we do not get paid to produce the podcast, these are costs that come out of our pockets. This can often be a struggle. If you enjoy the podcast, please take a minute to leave us a 5-Star rating on Apple Podcasts. Stream the podcast on Apple Podcasts, Spotify, Google Play, and everywhere you listen to podcasts. Peace!  

Intimacy extends beyond romantic relationships. Today we're joined by Dr. Aaron Boster, MD, and we chat about one of the most intimate relationships an MSer will ever have -- with their MS specialist.  Dr. Aaron Boster, MD is President of The Boster Center for Multiple Sclerosis (bosterms.com). He is a board-certified Neurologist specializing in Multiple Sclerosis and related CNS inflammatory disorders. Find Dr. Boster on Twitter @aaronbostermd and YouTube. You can find us on the web at http://myelinandmelanin.com, Facebook, Instagram, and Twitter @myelinmelanin. You can also subscribe to us on YouTube. Consider supporting us through our Patreon -- http://patreon.com/myelinmelanin. Patrons can gain access to exclusive content, Myelin & Melanin swag & more. Your support helps us offset the cost of maintaining our website, paying for our remote recording technology, music, podcast & merchandise production, and more. As we do not get paid to produce the podcast, these are costs that come out of our pockets. This can often be a struggle. If you enjoy the podcast, please take a minute to leave us a 5-Star rating on Apple Podcasts. Stream the podcast on Apple Podcasts, Spotify, Google Play, and everywhere you listen to podcasts. Peace!

Spirituality and intimacy? We are joined, this week by fellow MSer, Keesha (Kiki) Charles for a discussion of spiritual intimacy. How does spirituality impact life with chronic illness, MS in particular? Find Keesha (Kiki) on Instagram @kikicharles. You can find us on the web at http://myelinandmelanin.com, Facebook, Instagram, and Twitter @myelinmelanin. You can also subscribe to us on YouTube. Consider supporting us through our Patreon -- http://patreon.com/myelinmelanin. Patrons can gain access to exclusive content, Myelin & Melanin swag & more. Your support helps us offset the cost of maintaining our website, paying for our remote recording technology, music, podcast & merchandise production, and more. As we do not get paid to produce the podcast, these are costs that come out of our pockets. This can often be a struggle. If you enjoy the podcast, please take a minute to leave us a 5-Star rating on Apple Podcasts. Peace.

We are happy to be joined by Titianna Ammons -- a newly diagnosed MSer. Tati has an interesting story, and we're honored that she took time out of her busy schedule to chat with us. It was important for us to share as many kinds of stories as possible during MS Awareness Month -- the newly diagnosed journey to the OGs like us. Titianna is an advocate, activist, entrepreneur, beauty queen, student, aspiring politician, mother, wife, and all-around dope human. Find Titianna on her website at, http://titiannaammons.com , Twitter @AmmonsTitianna, Instagram @ony_1_tati, and Facebook under Titianna Ammons. You can find us on the web at http://myelinandmelanin.com, Facebook, Instagram, and Twitter @myelinmelanin. You can also subscribe to us on YouTube. Consider supporting us through our Patreon -- http://patreon.com/myelinmelanin. Patrons can gain access to exclusive content, Myelin & Melanin swag & more. Your support helps us offset the cost of maintaining our website, paying for our remote recording technology, music, podcast & merchandise production, and more. As we do not get paid to produce the podcast, these are costs that come out of our pockets. This can often be a struggle. If you enjoy the podcast, please take a minute to leave us a 5-Star rating on Apple Podcasts. Stream the podcast on Apple Podcasts, Spotify, Google Play, and everywhere you listen to podcasts. Peace!   

Dr. Gretchen Hawley is an MS-specialist Physical Therapist. She began treating people with Multiple Sclerosis during her first year of professional practice. The positive results she saw in her patients propelled her to immerse herself even deeper into the treatment of MS, taking every opportunity to attend workshops and conferences dedicated to improving lives through PT. Gretchen previously appeared on the podcast in 2018 - see FUMS 022 - and is back to share exciting news about her new online MS wellness program, The MSing Link, something she talked about way back in 2018! Topics covered include: A recap of Dr. Hawley's journey to become an MS Specialist Physical Therapist Emerging discoveries in the field of Physical Therapy What is Neuroplasticity? Why Dr. Gretchen thinks that every MSer should have at least one session of Physical Therapy The importance of stretching, exercise and mindfulness practice for all people with MS Details of Dr. Hawley's new MSing Link Online MS Wellness Program Resources for this episode (clickable links): Gretchen's previous appearance on the FUMS Podcast Show: FUMS 022 – Benefits of Physical Therapy for MS with Dr. Gretchen Hawley Hawley's MSinglink website Visit Gretchen on YouTube, Instagram and Facebook Dave Bexfield's Active MSers website Help keep FUMS alive at the FUMS Podcast Patreon page Sign up for the Patients Getting Paid course email waiting list ** Sign up for the FUMS Friday Night 6 Pack here: Friday Night 6-Pack. ~ Special thanks to my podcast editor Steve Woodward. Do you have a podcast or are you interested in starting a pod? **GREAT way for a Patient to get PAID!! I HIGHLY recommend adding Steve to your team. Find him at PodcastingEditor.com

Capital Dergisi'nin podcast kanalı Günümüzün Dünyası'nda, geleceğin iş hayatını şekillendirmeye hazırlanan Z kuşağını ve gençlerin beklentilerini konuştuk.

EP62 Comic book talk about the original Marvel Zombies tpb 1, Marvel Zombies resurrection #3, Ghostbusters Funko Universe one-shot, free comic book day issues. In MS talk we talk about the day in the life of an MSer, myself. --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app --- Send in a voice message: https://anchor.fm/kevin-kleinhans/message Support this podcast: https://anchor.fm/kevin-kleinhans/support

What's your love language? How does that relate to intimacy? Today we are joined by intimacy coach and AMFT Sade Ferrier and boudoir photographer, body coach, and fellow MSer Keyonna Renea. Don't miss this dope chat. Sade Ferrier, M.S., is passionate about spiritually-infused intimacy that brings joy instead of shame. Her audio courses and workshops encourage couples to develop an expanded understanding of sexual intimacy in relationships. Sade also practices as an associate marriage and family therapist in Suwanee, Georgia, with a special focus on sex therapy. Find Sade on Instagram @myintimacytherapist. Her website is www.myintimacytherapist.com Keyonna is a portrait and boudoir photographer, coach, and wellness advocate "empowering women to live their one delicious life and thrive." She's also a fellow MSer. You can find Keyonna on IG @keyonnarenea or @diagnosed.determined. You can also find her at www.keyonnarenea.com You can find us on the web at myelinandmelanin.com, Facebook, Instagram, and Twitter @myelinmelanin. You can also subscribe to us on YouTube. Consider supporting us through our Patreon -- patreon.com/myelinmelanin. Patrons can gain access to exclusive content, Myelin & Melanin swag & more. Your support helps us offset the cost of maintaining our website, paying for our remote recording technology, music, podcast & merchandise production, and more. Also, if you enjoy the podcast, please take a minute to leave us a 5-Star rating on Apple Podcasts. Stream the podcast on Apple Podcasts, Spotify, Google Play, and everywhere you listen to podcasts. Peace!    

BDSM, domination, submission, kink -- all the things. Welcome to Realm 8. Today we are joined again by the Dominatrix (and fellow MSer), Mistress Magenta, and writer Sara Youngblood Gregory. How does creativity fit into the world of kink and disability? Let's talk. Mistress Magenta is an American dominatrix living on the Gold Coast of Australia. Find Mistress Magenta on Twitter @MistressMagenta. Check out her website at www.mistress-magenta.com.  Sara Youngblood Gregory is a lesbian poet and culture writer. In addition to serving on the board of the lesbian literary and arts journal Sinister Wisdom, Sara is published in Vice, Jezebel, and The Huffington Post, among others. Find her on Twitter @s_youngblood_g or on Instagram @sinister.spinster. Check out her website: https://saragregory.org/ Patrons have access to a bonus continuing conversation about lifestyle kink relationships, aftercare, subspace, and more.   You can find us on the web at myelinandmelanin.com, Facebook, Instagram, and Twitter @myelinmelanin. You can also subscribe to us on YouTube. Consider supporting us through our Patreon -- patreon.com/myelinmelanin. Patrons can gain access to exclusive content, Myelin & Melanin swag & more. Your support helps us offset the cost of maintaining our website, paying for our remote recording technology, music, podcast & merchandise production, and more. Also, if you enjoy the podcast, please take a minute to leave us a 5-Star rating on Apple Podcasts. Stream the podcast on Apple Podcasts, Spotify, Google Play, and everywhere you listen to podcasts. Peace!

Episode 100! Can you believe it? Join us for Realm 4 of our intimacy series. Today we are joined by our favorite guest co-host, Carlos Kareem Windham. We chat about WAP, intimacy & sexual superpowers. How does shame shape the discourse? Carlos is a frequent Myelin & Melanin guest co-host and the host of Smoke & Mirrors (livestream on YouTube or Facebook). They're also a comic, activist, and fellow MSer. You can find them on Instagram @elcaballonegrito and Twitter @caballonegrito. You can find us on the web at myelinandmelanin.com, Facebook, Instagram, and Twitter @myelinmelanin. You can also subscribe to us on YouTube. Consider supporting us through our Patreon -- patreon.com/myelinmelanin. Patrons can gain access to exclusive content, Myelin & Melanin swag & more. Your support helps us offset the cost of maintaining our website, paying for our remote recording technology, music, podcast & merchandise production, and more. Also, if you enjoy the podcast, please take a minute to leave us a 5-Star rating on Apple Podcasts. Stream the podcast on Apple Podcasts, Spotify, Google Play, and everywhere you listen to podcasts. Peace!

Intimacy. We're taking you on a journey. Join us for Realm 1 -- today we're joined by Keyonna Renea. We chat about access intimacy, vulnerability, agency, and more. We first discovered the term "access intimacy" on a 2011 post on Mia Mingus' (check her out on Instagram @mia.mingus) blog "Leaving Evidence" -- https://leavingevidence.wordpress.com/2011/05/05/access-intimacy-the-missing-link/ We dig right in and chat about what that concept means to us. Keyonna is a portrait and boudoir photographer, coach, and wellness advocate "empowering women to live their one delicious life and thrive." She's also a fellow MSer. Keyonna opened up our first intimacy series "That Part: Intimacy & MS" -- check out Episode 63 to hear her MS story. You can find Keyonna on IG @keyonnarenea or @diagnosed.determined. You can also find her at www.keyonnarenea.com You can find us on the web at myelinandmelanin.com, Facebook, Instagram, and Twitter @myelinmelanin. You can also subscribe to us on YouTube. Consider supporting us through our Patreon -- patreon.com/myelinmelanin. Patrons can gain access to exclusive content, Myelin & Melanin swag & more. Your support helps us offset the cost of maintaining our website, paying for our remote recording technology, music, podcast & merchandise production, and more. Also, if you enjoy the podcast, please take a minute to leave us a 5-Star rating on Apple Podcasts. Stream the podcast on Apple Podcasts, Spotify, Google Play, and everywhere you listen to podcasts. Peace!  

We're joined by Lauren Butterly – environmental lawyer, proud MSer, and ignorer of conventions.

On September 5, 2020, our series "This Part: Intimacy & MS" starts. We're taking you on a journey. Our first intimacy series "That Part: Intimacy & MS" peeled back the layers -- helping us reflect on all of the elements that help one frame intimacy (especially as it relates to MS). In this series -- we're going deeper. Kink, bondage, pleasure, surrender, communication, connection, liberation, trust, disability, empowerment, CONSENT, control -- all the things. What you're listening to today is part of a longer conversation we had with Mistress Magenta -- a dominatrix and fellow MSer. Don't miss this engaging discussion. And get ready for an exciting ride. You can find us on the web at myelinandmelanin.com, Facebook, Instagram, and Twitter @myelinmelanin. You can also subscribe to us on YouTube. Consider supporting us through our Patreon -- patreon.com/myelinmelanin. Patrons can gain access to exclusive content, Myelin & Melanin swag & more. Your support helps us offset the cost of maintaining our website, paying for our remote recording technology, music, podcast & merchandise production, and more. Also, if you enjoy the podcast, please take a minute to leave us a 5-Star rating on Apple Podcasts. Stream the podcast on Apple Podcasts, Spotify, Google Play, and everywhere you listen to podcasts. Peace!    

Join us as we welcome back vlogger, fellow MSer, and HSCT recipient, Tanya-Marie Paul to the show. We chat, today, about her MS and HSCT journeys. Tanya-Marie was diagnosed with MS in June of 2003 although devastated at the time, she fought ahead. Since then she has raised 2 children, graduated from college and became a MS ambassador traveling the country speaking to our community this is what she calls her passion job. Recently, she underwent HSCT after multiple DMTs failed her and she vlogs about it. Tanya-Marie currently lives in NJ and is single but accepting applications. When not working at her day job or her passion job, she is always plotting to get to the beach. Find Tanya-Marie on IG and Twitter @tanyamarie_p. Her YouTube vlog is http://youtube/TanyaMarieP You can find us on the web at myelinandmelanin.com, Facebook, Instagram, and Twitter @myelinmelanin. You can also subscribe to us on YouTube. Consider supporting us through our Patreon -- patreon.com/myelinmelanin. Patrons can gain access to exclusive content, Myelin & Melanin swag & more. Your support helps us offset the cost of maintaining our website, paying for our remote recording technology, music, podcast & merchandise production, and more. Also, if you enjoy the podcast, please take a minute to leave us a 5-Star rating on Apple Podcasts. Stream the podcast on Apple Podcasts, Spotify, Google Play, and everywhere you listen to podcasts. Peace!    

Today we are joined by noted contemporary artist, art professor, and fellow MSer, Marcia Jones. We chat about MS and art as a spiritual practice. Marcia Jones received her Bachelor of Art in Fashion Design from Clark Atlanta University, completed studies at the Art Student League NY, and earned her Master of Fine Art in painting from the University of North Carolina at Greensboro. and is currently seeking programs to pursue her Doctorate in Education.   Jones served as a W.E.B Dubois Faculty Fellow at Clark Atlanta University where she was a Lecturing Professor of Art. Jones was selected by Fulton County Arts to attend The Caversham Printmaking Fellowship in South Africa, serving as a Visiting Artist at the University of Kwazulu Natal.    In 2006, she received an invitation to attend the Spelman College Taller Portobello Artist Colony in Taller Portobello, Panama. Jones was awarded by the Historical Auburn Ave. Creative Council a 9 month Artist Residency at the Studioplex Arts Complex Atlanta, GA, and conducted her Visual Emotion workshops at the SE Woman Herbalist Conference.     In 2011 Jones was selected as The Mc Coll Center for Visual Arts Harvey B Gantt Winter Resident, Charlotte NC. She worked as an Adjunct Professor of Art at Central Piedmont Community College, Charlotte NC where she was an Adjunct Professor at The Art Institute Charlotte, Johnson C Smith University. Find Marcia on IG at @marciajonesart You can find us on the web at myelinandmelanin.com, Facebook, Instagram, and Twitter @myelinmelanin. You can also subscribe to us on YouTube. Consider supporting us through our Patreon -- patreon.com/myelinmelanin. Patrons can gain access to exclusive content, Myelin & Melanin swag & more. Your support helps us offset the cost of maintaining our website, paying for our remote recording technology, music, podcast & merchandise production, and more. Also, if you enjoy the podcast, please take a minute to leave us a 5-Star rating on Apple Podcasts. Stream the podcast on Apple Podcasts, Spotify, Google Play, and everywhere you listen to podcasts. Peace!    

Today we are joined by Dr. Linda Chavers, Ph.D. We chat about her MS story, racial "healing" in 2020, and a recent article she wrote in the Boston Globe on race, racism, and white people.  Linda Chavers is a Lecturer in the Department of African and African American Studies at Harvard. She completed her Ph.D. in African American Studies with a focus on literature in 2013 from Harvard University. She writes essays and memoir for various publications such as Gawker, Dame, Elle, The Offing, and Rumpus. She's also a fellow MSer. Find Linda online at her website: www.lindachaverswrites.com; find her socials there. The article we discuss in the episode can be found here: https://www.bostonglobe.com/2020/06/09/magazine/what-too-many-white-people-still-dont-understand-about-racism/  You can find us on the web at http://myelinandmelanin.com, Facebook, Instagram, and Twitter @myelinmelanin. You can also subscribe to us on YouTube. Consider supporting us through our Patreon -- http://patreon.com/myelinmelanin. Patrons can gain access to exclusive content, Myelin & Melanin swag & more. Your support helps us offset the cost of maintaining our website, paying for our remote recording technology, music, podcast & merchandise production, and more. As we do not get paid to produce the podcast, these are costs that come out of our pockets. This can often be a struggle. If you enjoy the podcast, please take a minute to leave us a 5-Star rating on Apple Podcasts. Stream the podcast on Apple Podcasts, Spotify, Google Play, and everywhere you listen to podcasts. Peace!     

Today we are joined by MS advocate, white ally (we don't use that word frivolously) and fellow MSer, Meggie Young. We chat about white privilege, representation, and being a good human. Find Meggie on Instagram and Twitter @meggieandms. Check her out. Side note: She posts the most creative Instagram "Stories"... You can find us on the web at http://myelinandmelanin.com, Facebook, Instagram, and Twitter @myelinmelanin. You can also subscribe to us on YouTube. Consider supporting us through our Patreon -- http://patreon.com/myelinmelanin. Patrons can gain access to exclusive content, Myelin & Melanin swag & more. Your support helps us offset the cost of maintaining our website, paying for our remote recording technology, music, podcast & merchandise production, and more. As we do not get paid to produce the podcast, these are costs that come out of our pockets. This can often be a struggle. If you enjoy the podcast, please take a minute to leave us a 5-Star rating on Apple Podcasts. Stream the podcast on Apple Podcasts, Spotify, Google Play, and everywhere you listen to podcasts. Peace!   

Join us as we continue the intimacy conversation with YouTuber and fellow MSer, Tanya-Marie Paul. We discuss dating, cringe-worthy reflections, and the fear that accompanies all of it. Find Tanya-Marie on Instagram and Twitter @tanyamarie_p. Check her YouTube channel -- just search "Tanya-Marie P" You can find us on the web at http://myelinandmelanin.com, Facebook, Instagram, and Twitter @myelinmelanin. You can also subscribe to us on YouTube. Consider supporting us through our Patreon -- http://patreon.com/myelinmelanin. Patrons can gain access to exclusive content, Myelin & Melanin swag & more. Your support helps us offset the cost of maintaining our website, paying for our remote recording technology, music, podcast & merchandise production, and more. As we do not get paid to produce the podcast, these are costs that come out of our pockets. This can often be a struggle. If you enjoy the podcast, please take a minute to leave us a 5-Star rating on Apple Podcasts. Stream the podcast on Apple Podcasts, Spotify, Google Play, and everywhere you listen to podcasts. Peace!   

We know that self-love is the genesis of any intimate relationship -- its power cannot be overstated. Join us for Layer 1 of "That Part: Intimacy and MS" -- our first-ever multi-part series on intimacy and MS. This week, we are joined by boudoir photographer, body coach, and fellow MSer, Keyonna Renea. She talks about what self-love means to her. Stay tuned for an exciting few weeks! You can find her on IG @keyonna.renea as well as her website http://keyonnarenea.com You can find us on the web at myelinandmelanin.com, Facebook, Instagram, and Twitter @myelinmelanin. You can also subscribe to us on YouTube. Consider supporting us through our Patreon -- patreon.com/myelinmelanin. Patrons can gain access to exclusive content, Myelin & Melanin swag & more. Your support helps us offset the cost of maintaining our website, paying for our remote recording technology, music, podcast & merchandise production and more. As we do not get paid to produce the podcast, these are costs that come out of our pockets. This can often be a struggle. Also, if you enjoy the podcast, please take a minute to leave us a 5-Star rating on Apple Podcasts. Stream the podcast on Apple Podcasts, Spotify, Google Play and everywhere you listen to podcasts. Peace!  

Being asked "what you do" when you're on SSDI can be triggering for many MSers. Join us for a conversation with fellow MSer and content creator Kiki Charles as we grapple with this topic. Please forgive the sound quality of this episode. You can find Kiki on Instagram and Twitter @kikicharles. You can find us on the web at myelinandmelanin.com, Facebook, Instagram, and Twitter @myelinmelanin. You can also subscribe to us on YouTube. Consider supporting us through our Patreon -- patreon.com/myelinmelanin. Patrons can gain access to exclusive content, Myelin & Melanin swag & more. Your support helps us offset the cost of maintaining our website, paying for our remote recording technology, music, podcast & merchandise production and more. As we do not get paid to produce the podcast, these are costs that come out of our pockets. This can often be a struggle. Also, if you enjoy the podcast, please take a minute to leave us a 5-Star rating on Apple Podcasts. Stream the podcast on Apple Podcasts, Spotify, Google Play and everywhere you listen to podcasts. Peace!    

Language is powerful. With a chronic and incurable disease as variable and as misunderstood as MS, you'll often stumble upon confusing slogans that paint trite and problematic pictures of what MS looks like (or should look like). Join us as we talk with Lydia Guillory, a writer, an advocate and fellow MSer, about the troublesome (and sometimes triggering) language of MS. Find Lydia on Instagram @love.laugh.lydia  You can find US on the web at http://myelinandmelanin.com , Facebook, Instagram and Twitter @myelinmelanin. You can also check us out on  YouTube (https://www.youtube.com/channel/UCJ0XzvBpSJKqm9b-aaY6pZg?). Peace!                                                                                                                                                                                                                                                                                                                                                                                                                                                    

In this episode Justice talks about the warning he received early on in his MS diagnosis from a fellow MSer which still haunts him years later. "Do not get comfortable in that wheelchair! It will keep you from getting better". At the time, shrugging this off as a "that will never happen to me" moment, Justice found himself years later doing just that. Becoming completely comfortable and accustomed to getting around in a wheelchair without spending the same amount of time on learning to walk again. Justice chose not to listen to someone who had been where he was going and knew what was ahead, but you don't have to do the same!

In this episode Justice talks about the warning he received early on in his MS diagnosis from a fellow MSer which still haunts him years later. "Do not get comfortable in that wheelchair! It will keep you from getting better". At the time, shrugging this off as a "that will never happen to me" moment, Justice found himself years later doing just that. Becoming completely comfortable and accustomed to getting around in a wheelchair without spending the same amount of time on learning to walk again. Justice chose not to listen to someone who had been where he was going and knew what was ahead, but you don't have to do the same!

Today we got to speak to an all action MSer, if there is a fitness class then chances are Vicky will be in it! Welcome to City 8, Coventry! #MS #multiplesclerosis #Coventry

[intro music]   Hello, and welcome to Episode Twenty-four of Multiple Sclerosis Discovery, the podcast of the MS Discovery Forum. I’m your host, Dan Keller.   This week’s podcast features an interview with Professor Aksel Siva about asymptomatic MS. But to begin, here’s a brief summary of some of the latest developments on the MS Discovery Forum at msdiscovery.org.   We just uploaded a new data visualization to our website. This one breaks down the design of MRI-related clinical trials in MS. It combines 88 trials conducted between 1998 and 2013 in a colorful, interactive dot plot. Each dot represents a point in time for a particular measurement, such as brain volume. You can sort trials by phase, and you can look at trials in aggregate or one at a time. To view this new visualization, go to the Data Viz section under the “Research Resources” tab and click on the top link.   Magnetic resonance imaging is a source of anxiety for many people with MS. Just getting into the machine is nerve-wracking, and waiting for the results is even scarier, says a recent study from PLOS One. The researchers conducting the study suggested that educating patients about MRIs might alleviate some of the dread. Even though MSer’s typically know a great deal about MRIs, understanding how to interpret their own results may help increase the bond of trust with their physicians, the researchers said. To read more about the study, visit our “News and Future Directions” section, and under “News Briefs” click on the article, “MRI Education May Benefit MSers.”   Have a burning question? A bone to pick? Something you want to get off your chest? Start a discussion! We invite you to participate in our discussion forums by making your own threads and commenting on others. Just click on the “Discussions” option under the “Forums” tab on our website to get started.   [transition music]   Now to the interview. Last week, we spoke with Professor Aksel Siva about radiologically isolated syndrome. This week he’ll be speaking to us about asymptomatic MS and approaches to medicine in Turkey.   Interviewer – Dan Keller Professor Siva, first of all, why is it MS if it’s asymptomatic?   Interviewee – Aksel Siva Well, that’s a very good question and very difficult. But now with the tools that we have in medicine, we probably diagnose people without developing the disease. And, again, if we look to some other neurological diseases, today we are now discussing whether we can really diagnose Alzheimer prior that the individual develop the disease with imaging, with biomarkers, and so on. So to see the same thing in MS, I think it’s not really something very different. The thing is that not all these people will develop the disease, so the way we have been trained as clinicians, to us it’s important to see clinical signs and symptoms.    But now we have to start seeing that not everybody will develop the disease even if they do have it biologically, morphologically, or whatever you name it, however you name it. And then when they develop, we know well that all people are not going to have the same course. So these individual differences based on genetic background, maybe environmental influence, or whatever, should put a light in the way we see individuals – not a disease, but the individual with the disease rather let’s to say than the disease affecting the individuals. So I think this concept of subclinical disease, which is not only for MS, should influence our practice or our approach to our patients, and also in understanding the diseases and how to manage them.    MSDF Can you tell me a little bit about some of the studies that show heightened susceptibility and that possibly invoke the idea of genetics or environment?   Professor Siva I don’t think that I am in a state of responding to this question, because this is not really my area of interest. But from the genetic studies, we know there are some people who have the susceptibility genes, some who have the protective genes, and also some genes that may probably affect the course and prognosis of the patients. But, again, to my knowledge, what we have today, the information we have, is not really unique for everybody. It’s also very heterogeneous. So we need more time, and I think that this time it’s not too far, and especially the Genetic Consortium in the US, their findings are going to bring a lot of new information in the very near future.     MSDF What about studies on twins or just siblings. Although it doesn’t really nail down whether it’s genetic or environmental, it does speak to heightened risk. What did those show? Who looked at them and what did they find?   Professor Siva Well, again, I’m not aware of really very new studies on twins; identical and non-identical twins, the risk is very different, it’s maybe 2 to 3% up to 5%, depending like if it’s Canada or France it changes. But when it is identical, it’s 25 to 30. To my knowledge, the Canada cohort went up to 37%, although this number, I guess, was not published, but we know this. So it’s about only one-third even in the highest identical twin studies. So the question is what happens to the two-thirds? Maybe some of them do have incidental lesions, but they don’t have the disease. What is the present state in this genetics or others, I’m not aware of.   MSDF Even siblings who show oligoclonal bands don’t necessarily have or get the disease, is that correct?   Professor Siva No, that’s correct. According to the Swedish study, these people did not have the disease. Maybe more important, there was a subsequent paper reported in the same cohort, they have looked in the CSF of these asymptomatic, or let’s say of these siblings with positive oligoclonal bands, and what they called immunopathic trait. They looked in some other issues, but let’s put it these people with positive oligoclonal bands and the immunopathic trait, and they have looked in some neuronal degeneration markers. And the sibling who had the disease had high levels, which shows that there was a CNS damage, and asymptomatic case it was normal. So that is very clear that, yes, if you get the disease you might have some, let’s say, the biological evidence of it together with CNS damage, whereas if you don’t get… you may have the same trait but not the disease, because you will not have CNS damage. And there might be some underlying mechanisms – immunogenetic, whatever – which controls the disease spread and clinical expression. So I think this is a major issue.    And in the Steffano study when he had studied, again, the relatives of people with MS who had lesions – these 4% or 10% of asymptomatic cases – he also looked in the normal-appearing white matter. And in the diseased individuals it was abnormal; whereas in the people who had just those, let’s say, T2 changes, the normal-appearing white matter was completely normal, which again shows us that the CNS damage is very, very limited in people who don’t get the disease. And from the early autopsy studies, again the people in whom the autopsy had shown brain lesions, they were mostly periventricular and probably in silent areas, and there was not widespread damage as we see in people who get the clinical disease.    MSDF It seems Turkey is a very good setting for looking at a lot of this, because people get a lot of MRIs.   Professor Siva That’s correct, that’s very correct, and that’s why we have so many cases. Today with contribution of another medical school from Ankara, Hacettepe Medical School, together now we have more than 86 RIS cases that we continue to follow up, some of who have converted now.    MSDF And RIS is radiological isolated syndrome. Do people pay for their MRIs, or why are they so apt to come in and get so many?   Professor Siva Not really, it’s reimbursed, mostly it’s reimbursed, or if they have their private insurance because, let’s say, physician is suspecting something. And I should also confess that in some hospitals – mainly state hospitals – there is an overload of patients. Let’s say neurologists in those institutions may not find time to listen and examine the patient as they should do. So in order not to miss something, even a patient who comes with a headache may get an MRI.   MSDF Is there a difference in Turkey of how you approach MS patients, or treat them, or follow them from in other countries that you’ve noticed?   Professor Siva Not really. It’s, I would say, very much the same. I have started our MS clinic in 1987 here, and today we have more than 7,000 registered patients, which is really quite a very large population. This doesn’t mean that we follow all the 7,000 and more patients because many of them had been referred for second opinions, but I would say we continue to see at least half of these people. And the way the practice is here is not any different than most major European and US centers. I had spent some time at Mayo many years ago and I had some of my other colleagues now who had spent some time. So it’s more or less the same. We have all the same drugs, most of them are reimbursed. So we have many alternatives for our MS patients, although there are some restrictions for reimbursement. We need to at least try the so-called injectables in order to go to orals, or, let’s say, the monoclonal antibody therapies, but almost all are available. And according to some rules, they are also reimbursed.    MSDF Are there good patient support services, psychosocial and other?   Professor Siva Not maybe so strong. That we may differ a bit from Europe and US. We do have Turkish MS Society where such services are tried to be provided, but that is not enough. We do have some MS Society chapters in some cities but not everywhere. But mostly the problem, I would say, is economical. All these services mostly are based on voluntary basis.   MSDF Do you think that patients react the same to their disease?   Professor Siva We do have some studies – psychologically, physically – and it’s at very similar to western theories. So actually Turks are Caucasians mostly, and therefore it’s what if we are going to call the western-type MS, that’s what we see here too.   MSDF Are there cultural differences in various parts of Turkey how people view their disease, or is it all about the same? I mean, Istanbul is really Europe, as you move farther east you get into more Asian and Middle Eastern.   Professor Siva I may say not really, because we get referrals from all around Turkey, and the behavior is not really much different. I should say either whether the patient is from Istanbul or from the east part of the country or the Mediterranean, it’s more or less the same.   MSDF  Anything important to add that we’ve missed or interesting topic points?   Professor Siva We have a large number of MS people in Turkey, probably prevalence rate is around 50 per 100,000 or more. There have been a number of prevalence studies, and this is about what we can really derive from all the studies – 50 or more even. But I have the impression that we are getting more and more MS in Turkey today, and more familial cases, which was not the case maybe 15 to 20 years ago.   MSDF Very good. Thanks a lot.   Professor Siva Thank you.   [transition music]   Thank you for listening to Episode Twenty-four of Multiple Sclerosis Discovery. This podcast was produced by the MS Discovery Forum, MSDF, the premier source of independent news and information on MS research. MSDF’s executive editor is Robert Finn. Msdiscovery.org is part of the non-profit Accelerated Cure Project for Multiple Sclerosis. Robert McBurney is our President and CEO, and Hollie Schmidt is vice president of scientific operations.    Msdiscovery.org aims to focus attention on what is known and not yet known about the causes of MS and related conditions, their pathological mechanisms, and potential ways to intervene. By communicating this information in a way that builds bridges among different disciplines, we hope to open new routes toward significant clinical advances.   We’re interested in your opinions. Please join the discussion on one of our online forums or send comments, criticisms, and suggestions to editor@msdiscovery.org.    [outro music]