dystrophy

In this week’s podcast, Neurology Today’s editor-in-chief discusses data suggesting vamorolone as an alternative to corticosteroids for Duchenne muscular dystrophy, how an aquaporin protein promotes amyloid clearance, and neurologic events associated with monkeypox virus.

Today I welcome Keisha Greaves. At 24 years-of-age, Keisha was diagnosed with Limb-Girdle Muscular Dystrophy; she later started the Girls Chronically Rock clothing line to inspire others with chronic illnesses to have confidence and not let their disability define who they are. Keshia is a motivational speaker, has a Master’s in Business Management, and is the Massachusetts State Ambassador for the Muscular Dystrophy Association.

Time for some detective work - can you diagnose the cause of this man’s shoulder pain? Listen out for the clues in this interesting case study.

When your shoulder pain patient has bilateral shoulder pain after starting a gym program, difficulty lifting their arms overhead due to weakness, significant bilateral scapular winging and muscle atrophy, what are your potential diagnoses?

Find out in this case study with Jo Gibson (Clinical Physiotherapy Specialist), and discover:

• When patients have uncommon shoulder pain presentations, what potential diagnoses can you keep in mind?
• How does it impact your diagnosis if your patient has difficulty smiling, whistling and drinking through a straw?
• What’s this patients’ diagnosis?
• What tests can be performed to confirm the diagnosis?
• Which muscles are commonly affected?
• How much muscle weakness commonly occurs?
• What is the long term prognosis for this condition?
• What treatment is supported by the evidence?
• Are braces helpful?
• Which medical specialists are important to include in diagnosis & management?

Accurately assess, diagnose & treat stiff shoulders, including frozen shoulder, with this free videos series from Jo Gibson (Clinical Physiotherapy Specialist) at clinicaledge.co/shoulder

The handout for this podcast consists of articles referenced in the podcast. There is no additional transcript or handout available.

Links associated with this episode:

• Accurately assess, diagnose & treat stiff shoulders, including frozen shoulder, with this free videos series from Jo Gibson (Clinical Physiotherapy Specialist)
• Improve your acute shoulder pain diagnosis with 3 free videos from Jo Gibson
• The Facioscapulohumeral Muscular Dystrophy (FSHD) Society
• Improve your confidence and clinical reasoning with a free trial Clinical Edge membership
• Join Jo Gibson live on Facebook & ask your shoulder related questions every Monday
• Download and subscribe to the podcast on iTunes
• Download the podcast now using the best podcast app currently in existence - Overcast
• Listen to the podcast on Spotify
• Jo Gibson on Twitter
• Let David know what you liked about this podcast on Twitter
• Review the podcast on iTunes
• Infographics by Clinical Edge

Articles associated with this episode:

• CLICK HERE to download the articles associated with this podcast

• Hamel J, Tawil R. Case Studies on the Genetic and Clinical Diagnosis of Facioscapulohumeral Muscular Dystrophy. Neurologic Clinics. 2020 Aug 1;38(3):529-40.

• Mul K, Lassche S, Voermans NC, Padberg GW, Horlings CG, van Engelen BG. What's in a name? The clinical features of facioscapulohumeral muscular dystrophy. Practical neurology. 2016 Jun 1;16(3):201-7.

Being diagnosed with a chronic, debilitating disease can certainly bring stress to one's life. In fact, that stress can be significant enough to be called trauma.

How one handles this stress varies. Some people have amazing coping capacity and are hard-wired for resilience while others have more difficulty. None of it is easy.

How one handles this stress varies. Some people have amazing coping capacity and are hard-wired for resilience while others have more difficulty. None of it is easy.

Mary Holt, a Registered Nurse with a Master's Degree in Counseling Psychology, shares her journey of loss and recovery and the profound impact a mindfulness meditation practice has had on her life and work. She brings this practice to the clinics where she helps patients and their families with neuromuscular and Parkinson's disease.

What is a Patient Advocate? A patient advocate can be an actual patient with a mental and/or physical health condition, a caregiver for someone with a health condition, or a paid professional advocating on behalf of others with a health condition.

Andrea L. Klein, of Cleveland, Tennessee, has collagen six intermediate congenital muscular dystrophy. She started a Facebook group, Breathe with MD Support Group, for people with a neuromuscular disease who struggle with respiratory health. Recently, she established a nonprofit organization with the same name.

Melissa Talwar, of Pasadena, California, has struggled with fibromyalgia since she was 14 years old. Her experiences with different medications and their alarming side effects catapulted her into focused research on the condition and potential treatments. After volunteering with a patient advocacy organization, and  traveling around the U.S. to meet others with fibromyalgia, Melissa also established a nonprofit organization.

Hundreds of studies prove that the millennium-old practice of mindfulness positively impacts one’s health, specifically for those with illnesses or caregiving responsibilities. In this episode, three guests share stories of how they turned to mindfulness to find peace with chronic migraine, chronic fatigue syndrome, and being a parent of a child with muscular dystrophy. Later you’ll hear from a Mindfulness-Based Stress Reduction teacher who explains how mindfulness works, the importance for those with health challenges, and how to incorporate it into your daily life.

Dan gambles $50 on a harry potter bet. Andy avoids a sexual assault in a hotel. Tyler jumps off a ski lift. Nam bangs a young woman with an old lady name. Alex introduces the concept of ethically slutty. All our guests have TV Credits.

try not 2 cum.

Registered Nurse and proud septuagenarian, Barbara Blaser, was the guest speaker at my Northern California myotonic dystrophy support group. With her healthcare background and deep knowledge of medicinal herbs, she spoke about the use of herbal tinctures, edibles, and lotions to help relieve muscle pain, anxiety, insomnia, gastrointestinal problems, and more.

Barbara's nursing career was predominantly in the mental health field. But at some point in her 60s she had an esophagectomy and due to complications, she developed septicemia. She turned to natural herbal healing to help her pain, anxiety, and GI problems.

Handouts that Barbara provided at the support group meeting are culled from this website.

Whitney Powell's art is something you have to see to believe. Is it a photo? Is it a drawing? It's almost impossible to tell the difference. But what is perhaps even more incredible is Whitney's absolute zest for life and her refusal to let challenges - even a progressively debilitating disease - dampen that. Don't pity Whitney. Respect her, her talent and her resilience. 

Part 1: Director, Reggie Groff, and Suzan Roberts Norton join me to discuss the documentary film The Brothers.  This movie shares the story of Terry & Suzan’s two sons, JT and Michael.  JT was a vibrant, energetic child who was diagnosed with schizophrenia in his early adult years which ultimately led to him committing suicide.  Michael was diagnosed and is living with Muscular Dystrophy and was super close with JT.  To honor his brother, he wanted to make a movie about him.  Enter Reggie Groff, who worked with Michael to share this inspiring story of a family that fights through tremendous hardship and loss with creativity and a zest for life.

Part 2: Weekly Words of Wisdom - Lynda shares a DailyOM email about Quality vs. Quantity.

Two friends from grade school share their stories of a diagnosis of a neurological condition. Marc has Multiple Sclerosis and Steve has Parkinson's disease. I have a form of muscular dystrophy called myotonic dystrophy. It's purely coincidental we all went to the same synagogue; there is no correlation between being Jewish and having a neurological condition.

Both Marc and Steve maintain positive attitudes. Marc has educated himself thoroughly about MS. Steve has tried different exercise programs customized for people with Parkinson's and now facilitates a support group.

Practicing Pilates can be done on a mat or with any number of devices such as the Reformer. Shannon Knorr, a yoga and Pilates instructor, talks about therapeutic Pilates to help with body alignment, pain relief, and more. Julia Carver, a Pilates and Movement Therapist, works with veterans who have experienced PTSD and other trauma to help them with neural reconnection.

For people with muscle weakening conditions, like muscular dystrophy, Pilates can help strengthen core muscles.

Diana DeGarmo & Ace Young met in the Broadway production of "HAIR" in 2010, connecting over their shared experience as American Idol contestants. Diana has a new album out, "GEMINI," a country big band record available digitally and on vinyl. Ace is working on his new solo project, too! And next year they'll be touring together in the national tour of Broadway's "First Date." 

In this episode we will discuss Complex Regional Pain.  Our Guest, Barby Ingle returns from a previous episode on Endometriosis. 

​Complex regional pain syndrome (CRPS) is a chronic (lasting greater than six months) pain condition that most often affects one limb (arm, leg, hand, or foot) usually after an injury.  CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems.  The central nervous system is composed of the brain and spinal cord; the peripheral nervous system involves nerve signaling from the brain and spinal cord to the rest of the body.  CRPS is characterized by prolonged or excessive pain and changes in skin color, temperature, and/or swelling in the affected area.

CRPS is divided into two types:  CRPS-I and CRPS-II. Individuals without a confirmed nerve injury are classified as having CRPS-I (previously known as reflex sympathetic dystrophy syndrome).  CRPS-II (previously known as causalgia) is when there is an associated, confirmed nerve injury.  As some research has identified evidence of nerve injury in CRPS-I, it is unclear if this disorders will always be divided into two types.  Nonetheless, the treatment is similar.

CRPS symptoms vary in severity and duration, although some cases are mild and eventually go away.  In more severe cases, individuals may not recover and may have long-term disability.

Four women with different physical abilities talk about what fashion means to them and how they deal with fashion challenges.

Cheryl and Lainie both have Charcot Marie Tooth (CMT) and wear AFO leg braces. Lainie explores fashion hacks and DIY solutions in her blog, Trend-Able.

Keisha has Limb Girdle Muscular Dystrophy, studied fashion, and launched her company, Girls Chronically Rock.

Kirsten Passmore has Cerebral Palsy and has been enjoying CosPlay for the past five years. Learn more about her organization, CosAbility, and see which conventions they'll attend by liking their Facebook page.

If you have a physical or mental health condition that has altered the way you look or behave, it may scare people. Have you had friends or family members change how they interact with you or perhaps distance themselves?

A recent incident with an old friend got me thinking about this topic. In the Glass Half Full Facebook group some have shared their stories. I invite you to share your experiences either in Facebook or in the podcast notes on the Glass Half Full website.

Vocal problems can occur for people with all types of conditions -- Parkinson's disease, muscular dystrophy, stroke. Acute laryngitis is very common while chronic laryngitis affects over 20% of the population.

Christine received a diagnosis of spasmodic dysphonia and now experiences some relief with botox shots. Hanna, who has SMA type 1, uses assistive technology to help her communicate. Check out her website to watch a video demonstrating how she uses the technology.