Neuro Note #4: A List of Interesting & Important Resources!
In no particular order, I have provided some podcasts, videos, articles, and social media accounts for learning more about people and conditions with which occupational therapists may work! I chose to make this list for my final Neuro Note because I couldn't pick just one condition or one individual to share- there are so many interesting resources! Enjoy
1) Getting Curios with Jonathan Van Ness Podcast, Episode: What Are Strokes? with Dr. Lina Nih
Description: Jonathan Van Ness is a hairdresser, podcast host, and TV personality who stars in "Queer Eye" an amazing make over documentary series on Netflix. On his podcast, Jonathan has quests for 30 minutes each week to answer questions that he is curious about. The episodes range from " What's Going on in the Middle East Right Now?" to " How Can We Be Less Rude to Bees?".
In the episode "What Are Strokes?" Dr. Lina Nih discusses her research as a Post Doc at UCLA in which she studies how vessels function in the brain, specifically brain tissue regeneration and how to promote vessel formation after strokes.
Link: https://itunes.apple.com/us/podcast/getting-curious-with-jonathan-van-ness/id1068563276?mt=2&i=1000366305941
2) "A Real Life Earth Angel (Avery's Story)" by the YouTube Series Special Books by Special Kids
Description: Special Books by Special Kids is a nonprofit organization with the following mission, "Founded in 2016, Special Books by Special Kids, Inc. is a 501(c)3 organization that seeks to normalize the diversity of the human condition under the pillars of honesty, respect, mindfulness, positivity and collaboration. This multi-media movement supports the acceptance and celebration of all members of the neurodiverse community regardless of diagnosis, age, race, religion, income, sexual orientation, gender or gender expression. "
In this video, the founder of Special Books by Special kids interviews Avery, a 14-year old girl with Cerebral Palsy. Avery and her family discuss how she likes to Snapchat, make new friends, and that other's should know that she is verbal and understands what's going on around her even if she is quiet when out in public.
Link: https://www.youtube.com/watch?v=0UCB04gnHEI
3) From high school to nursing home: 20-year-old learns to cope with fatal disease
Description: "Desiree Buettner was diagnosed with Huntington's disease when she was 18. Huntington's is an inherited disease that causes degeneration of nerve cells in the brain. There is no cure for it."
Link: https://siouxcityjournal.com/lifestyles/health-med-fit/from-high-school-to-nursing-home--year-old-learns/article_06dd5b66-dd55-52ee-864d-c54b7be8d324.html
4) "What Happens When You Have a Disease Doctors Can't Diagnose? a TEDTalk by Jennifer Brea
Description: This is a video that we saw in class, and I had to include it because Jennifer gives such an honest and touching recount of her personal experience.
"Five years ago, TED Fellow Jennifer Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. In this poignant talk, Brea describes the obstacles she's encountered in seeking treatment for her condition, whose root causes and physical effects we don't fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat."
Link: https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose
5) Instagram account of Laura Browning Grant
Description: Jonathan Grant, a Navy Seal, was in a car accident in which he suffered a traumatic brain injury. A video of Jonathan standing during therapy went viral because he began kissing his wife's neck. You can see the video here: https://www.facebook.com/ktvu/videos/10154855013022061/
Jonathan Grant's wife Laura posts pictures and videos of her husbands progress and set backs which is now over a year after his accident.
Another video compilation can be seen here: https://www.facebook.com/Cody.B.Sperber/videos/1490209524401583/
Link to Laura's Instagram: https://www.instagram.com/laurabpilates/
6) "Dillan's Voice" a YouTube video by Apple
Description: Warning, this video may make you cry! This is a video created by Apple about how their product (the iPad) helped Dillan, a teenage boy with Autism, to communicate with others. In the video, Dillan's mom states, "Not being able to speak is not the same as not having something to say." Dillan describes using the iPad to communicate as being freed. Assistive technology can really transform an individual's life!
Link: https://www.youtube.com/watch?v=UTx12y42Xv4
7) "ALS: It's My Story Too" an article by MDA/ ALS News Magazine Online
Description: "ALS doesn’t just affect the person with the disease — it has a profound impact on those who care about that person, too. On MDA’s website during May, an interactive feature, "ALS: It's My Story, Too," provides an outlet for spouses and partners, children, friends, relatives and co-workers to describe how the disease has impacted their lives. Below are several postings from MDA’s 2011 "It's My Story, Too." Sadness and loss are common themes, but so too are inspiration and hope."
As occupational therapists, it is always important to keep the experiences of family members and caregivers in mind.
Link: http://alsn.mda.org/article/als-it%E2%80%99s-my-story-too
8) Fletcher Cleaves
Description: Fletcher Cleaves is a Memphian who was in a car accident in his first year of college. A distracted driver swerved into his lane and Fletcher's car flipped. He was left with a cervical spinal cord injury. Today, he is an inspiration to others as he goes around speaking to audiences (such as my class!) about the dangers of distracted driving and the importance of a positive attitude!
You can check out his website here: https://www.fletchercleaves.com
And a video about his story here: https://vimeo.com/140022562
9) Moving Forward After Guillian-Barre' Syndrome (GBS)
Description: "'Madonna is where miracles happen,' says Karen Guyll. The Sulphur Springs, Arkansas woman is thankful to have her life back after being stricken with Guillain-Barre’ syndrome or GBS. Karen shares her story of recovery at Madonna Rehabilitation Hospital and why she wouldn't take any of her experience with GBS back."
Link: https://www.madonna.org/videos/moving-forward-after-guillain-barre-syndrome-gbs
10) Life as a Quadriplegic: Sophia Malthus
Description: "Sophia Malthus became a quadriplegic after being thrown off her horse just over a year ago. She’s a young woman with sass, and we follow Sophia and her family on a journey to acceptance, and back to independence."
In this video, Sophia discusses some interesting therapies such as neuro rehab, and she references the universal cuff (which she calls palmar bands) and the ASIA rating scale. She also talks about how working on her balance and using her hands during every day tasks like doing her make up is "obviously therapeutic" which is such OT talk!
Link: https://www.youtube.com/watch?v=voPlqTOdVU8
1) Getting Curios with Jonathan Van Ness Podcast, Episode: What Are Strokes? with Dr. Lina Nih
Description: Jonathan Van Ness is a hairdresser, podcast host, and TV personality who stars in "Queer Eye" an amazing make over documentary series on Netflix. On his podcast, Jonathan has quests for 30 minutes each week to answer questions that he is curious about. The episodes range from " What's Going on in the Middle East Right Now?" to " How Can We Be Less Rude to Bees?".
In the episode "What Are Strokes?" Dr. Lina Nih discusses her research as a Post Doc at UCLA in which she studies how vessels function in the brain, specifically brain tissue regeneration and how to promote vessel formation after strokes.
Link: https://itunes.apple.com/us/podcast/getting-curious-with-jonathan-van-ness/id1068563276?mt=2&i=1000366305941
2) "A Real Life Earth Angel (Avery's Story)" by the YouTube Series Special Books by Special Kids
Description: Special Books by Special Kids is a nonprofit organization with the following mission, "Founded in 2016, Special Books by Special Kids, Inc. is a 501(c)3 organization that seeks to normalize the diversity of the human condition under the pillars of honesty, respect, mindfulness, positivity and collaboration. This multi-media movement supports the acceptance and celebration of all members of the neurodiverse community regardless of diagnosis, age, race, religion, income, sexual orientation, gender or gender expression. "
In this video, the founder of Special Books by Special kids interviews Avery, a 14-year old girl with Cerebral Palsy. Avery and her family discuss how she likes to Snapchat, make new friends, and that other's should know that she is verbal and understands what's going on around her even if she is quiet when out in public.
Link: https://www.youtube.com/watch?v=0UCB04gnHEI
3) From high school to nursing home: 20-year-old learns to cope with fatal disease
Description: "Desiree Buettner was diagnosed with Huntington's disease when she was 18. Huntington's is an inherited disease that causes degeneration of nerve cells in the brain. There is no cure for it."
Link: https://siouxcityjournal.com/lifestyles/health-med-fit/from-high-school-to-nursing-home--year-old-learns/article_06dd5b66-dd55-52ee-864d-c54b7be8d324.html
4) "What Happens When You Have a Disease Doctors Can't Diagnose? a TEDTalk by Jennifer Brea
Description: This is a video that we saw in class, and I had to include it because Jennifer gives such an honest and touching recount of her personal experience.
"Five years ago, TED Fellow Jennifer Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. In this poignant talk, Brea describes the obstacles she's encountered in seeking treatment for her condition, whose root causes and physical effects we don't fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat."
Link: https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose
5) Instagram account of Laura Browning Grant
Description: Jonathan Grant, a Navy Seal, was in a car accident in which he suffered a traumatic brain injury. A video of Jonathan standing during therapy went viral because he began kissing his wife's neck. You can see the video here: https://www.facebook.com/ktvu/videos/10154855013022061/
Jonathan Grant's wife Laura posts pictures and videos of her husbands progress and set backs which is now over a year after his accident.
Another video compilation can be seen here: https://www.facebook.com/Cody.B.Sperber/videos/1490209524401583/
Link to Laura's Instagram: https://www.instagram.com/laurabpilates/
6) "Dillan's Voice" a YouTube video by Apple
Description: Warning, this video may make you cry! This is a video created by Apple about how their product (the iPad) helped Dillan, a teenage boy with Autism, to communicate with others. In the video, Dillan's mom states, "Not being able to speak is not the same as not having something to say." Dillan describes using the iPad to communicate as being freed. Assistive technology can really transform an individual's life!
Link: https://www.youtube.com/watch?v=UTx12y42Xv4
7) "ALS: It's My Story Too" an article by MDA/ ALS News Magazine Online
Description: "ALS doesn’t just affect the person with the disease — it has a profound impact on those who care about that person, too. On MDA’s website during May, an interactive feature, "ALS: It's My Story, Too," provides an outlet for spouses and partners, children, friends, relatives and co-workers to describe how the disease has impacted their lives. Below are several postings from MDA’s 2011 "It's My Story, Too." Sadness and loss are common themes, but so too are inspiration and hope."
As occupational therapists, it is always important to keep the experiences of family members and caregivers in mind.
Link: http://alsn.mda.org/article/als-it%E2%80%99s-my-story-too
8) Fletcher Cleaves
Description: Fletcher Cleaves is a Memphian who was in a car accident in his first year of college. A distracted driver swerved into his lane and Fletcher's car flipped. He was left with a cervical spinal cord injury. Today, he is an inspiration to others as he goes around speaking to audiences (such as my class!) about the dangers of distracted driving and the importance of a positive attitude!
You can check out his website here: https://www.fletchercleaves.com
And a video about his story here: https://vimeo.com/140022562
9) Moving Forward After Guillian-Barre' Syndrome (GBS)
Description: "'Madonna is where miracles happen,' says Karen Guyll. The Sulphur Springs, Arkansas woman is thankful to have her life back after being stricken with Guillain-Barre’ syndrome or GBS. Karen shares her story of recovery at Madonna Rehabilitation Hospital and why she wouldn't take any of her experience with GBS back."
Link: https://www.madonna.org/videos/moving-forward-after-guillain-barre-syndrome-gbs
10) Life as a Quadriplegic: Sophia Malthus
Description: "Sophia Malthus became a quadriplegic after being thrown off her horse just over a year ago. She’s a young woman with sass, and we follow Sophia and her family on a journey to acceptance, and back to independence."
In this video, Sophia discusses some interesting therapies such as neuro rehab, and she references the universal cuff (which she calls palmar bands) and the ASIA rating scale. She also talks about how working on her balance and using her hands during every day tasks like doing her make up is "obviously therapeutic" which is such OT talk!
Link: https://www.youtube.com/watch?v=voPlqTOdVU8
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