CRPS MEDIA - VIDEO AND AUDIO
This sections includes Videos about CRPS; everything from Videotaped Conferences, Doctor Interviews, Patient/Loved One interviews, TV and print News pieces, etc. We will include the links to these videos and in some cases short clips from them.
We also have new video links in our Nerve Block section and treatment areas.
To view any of the videos below click on the Bold Red Type. In addition to the video described you will be able to see many other similar videos on that section of YouTube.
We also have new video links in our Nerve Block section and treatment areas.
To view any of the videos below click on the Bold Red Type. In addition to the video described you will be able to see many other similar videos on that section of YouTube.
CRPS VIDEOS - PATIENT SUBMITTED
Testimonial concerning Hyperbaric Oxygen Therapy for Treatment of CRPS
39 year old female discusses her treatment over the years with SCS and HBOT and how they have helped her.
Helping University Students Be Aware of CRPS! Check out Suzanne Stewart's blog that includes several videos from her recent event educating college students about not only the disease of CRPS but also on how to be a Health Advocate for CRPS as well!
Being a Teenager is Tough! - Having RSD is really tough. Being a teenager with RSD? Not the easiest thing in the world, just ask Lorinda.
Alyssa's Story - If you are a newly diagnosed teen struggling with this disease, not sure how or even IF you can or will beat it be sure to check out Allysa's story. Alleys is an amazing young lady, as is her mom and her physical therapy/medical team. Allysa never gave up and when you watch the video you get to see her transformation from how this disease can seemingly destroy someone's body, any age, and in Allysa's case see how she pushes beyond herself and gets to the other side. We all fall in life, we all get knocked down. We all get told by people, "You can't do that." The special ones among us undergo extreme tests in life and emerge stronger on the other side. May you derive inspiration from her story.
Increasing CRPS Awareness - Excellent video/slide show by 15 year old Emily Jackson showing some "This is what CRPS is all about folks" Facts. Great job Emily! This is one for you to share with your family and friends who don't understand how the disease impacts you.
Girl vs. CRPS My battle against Complex Regional Pain Syndrome - Little shares her story from when she was at the Children's Hospital. She is doing so much better now; skiing, playing tennis, running cross-country even!
Be sure to check out our Physical Therapy Section before starting any new Physical Therapy treatment. The right kind of PT can be a great benefit, the wrong kind can be hurtful. The younger you are, the more likely you are to get rid of this disease IF you get diagnosed quickly, treated correctly, and are careful to avoid the things that can make the disease worse, like using ICE, hot/cold contrast therapy, surgery, or some of the wild treatments out there. Do your due diligence, do your research! Remember, you are in charge!
Barlow Girl Shares Her StruggleWith RSD - "We are often asked at American RSDHope , How can God allow people to suffer such pain?, says Keith Orsini, from American RSDHope. "My best reply is that they should spend some time in the book of Job. Especially towards the end of the book, the last verses (Job 38:1-42 and then Job's reply) when God finally answers much the same question from Job about his own suffering when he had held true faith".
In this video, Alyssa was finally diagnosed with RSD when she was 18. At one point she was unable to walk. Listen to her as she describes her own struggle with faith.
Project Awesome For RSD - This is Ailsa's RSD Awareness Video, great facts, great music as well. Good job Ailsa!
Complex Regional Pain Syndrome Video - From the on-line Support Group of Australia. Very heart-felt piece, well done. Great one to share.
American RSDHope does not endorse/condone any particular therapy, hospital, clinic, therapist, or physician or videos by their posting here or any that are visited through these links. They are posted for your enjoyment and we hope you find them helpful in some way as well. Before you start/stop any new therapy, exercise program, or medication consult with your Doctor. For more information on CRPS and/or Physical Therapy and CRPS please visit our main pages.
Also, check out some patients written stories HERE
39 year old female discusses her treatment over the years with SCS and HBOT and how they have helped her.
Helping University Students Be Aware of CRPS! Check out Suzanne Stewart's blog that includes several videos from her recent event educating college students about not only the disease of CRPS but also on how to be a Health Advocate for CRPS as well!
Being a Teenager is Tough! - Having RSD is really tough. Being a teenager with RSD? Not the easiest thing in the world, just ask Lorinda.
Alyssa's Story - If you are a newly diagnosed teen struggling with this disease, not sure how or even IF you can or will beat it be sure to check out Allysa's story. Alleys is an amazing young lady, as is her mom and her physical therapy/medical team. Allysa never gave up and when you watch the video you get to see her transformation from how this disease can seemingly destroy someone's body, any age, and in Allysa's case see how she pushes beyond herself and gets to the other side. We all fall in life, we all get knocked down. We all get told by people, "You can't do that." The special ones among us undergo extreme tests in life and emerge stronger on the other side. May you derive inspiration from her story.
Increasing CRPS Awareness - Excellent video/slide show by 15 year old Emily Jackson showing some "This is what CRPS is all about folks" Facts. Great job Emily! This is one for you to share with your family and friends who don't understand how the disease impacts you.
Girl vs. CRPS My battle against Complex Regional Pain Syndrome - Little shares her story from when she was at the Children's Hospital. She is doing so much better now; skiing, playing tennis, running cross-country even!
Be sure to check out our Physical Therapy Section before starting any new Physical Therapy treatment. The right kind of PT can be a great benefit, the wrong kind can be hurtful. The younger you are, the more likely you are to get rid of this disease IF you get diagnosed quickly, treated correctly, and are careful to avoid the things that can make the disease worse, like using ICE, hot/cold contrast therapy, surgery, or some of the wild treatments out there. Do your due diligence, do your research! Remember, you are in charge!
Barlow Girl Shares Her StruggleWith RSD - "We are often asked at American RSDHope , How can God allow people to suffer such pain?, says Keith Orsini, from American RSDHope. "My best reply is that they should spend some time in the book of Job. Especially towards the end of the book, the last verses (Job 38:1-42 and then Job's reply) when God finally answers much the same question from Job about his own suffering when he had held true faith".
In this video, Alyssa was finally diagnosed with RSD when she was 18. At one point she was unable to walk. Listen to her as she describes her own struggle with faith.
Project Awesome For RSD - This is Ailsa's RSD Awareness Video, great facts, great music as well. Good job Ailsa!
Complex Regional Pain Syndrome Video - From the on-line Support Group of Australia. Very heart-felt piece, well done. Great one to share.
American RSDHope does not endorse/condone any particular therapy, hospital, clinic, therapist, or physician or videos by their posting here or any that are visited through these links. They are posted for your enjoyment and we hope you find them helpful in some way as well. Before you start/stop any new therapy, exercise program, or medication consult with your Doctor. For more information on CRPS and/or Physical Therapy and CRPS please visit our main pages.
Also, check out some patients written stories HERE
CRPS VIDEOS - CHECK THESE OUT!
CRPS DESCRIBED - By Ken McKim - What is CRPS? How does it happen, what does it feel like, how does it occur? Check out this excellent video by Ken McKim, one in a series called "
"Ken McKim is an advocate for anyone with a chronic illness, and a WEGO Health Advocate Award Nominee for 2014. He believes that the chronically ill deserve to be treated with respect, and to be able to live their lives in peace
in as little pain as possible." For more information on Ken McKim check out his website DON'T PUNISH PAIN
Be sure to check out his series of videos "DON'T PUNISH PAIN VIDEOS"
By the way, when you visit this video on its YouTube page you will see many, many other videos on CRPS by some of the top physicians in the country, just look to the list on the right hand side of the page, AFTER you watch Ken's video!
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Neuroinflammation Workshop - Just how does it figure in to CRPS? What is the connection? Is there one? Is there a connection between Neuroinflammation and other neurological diseases? If so, what is it?
These are just some of the questions that are being discussed in research circles all over the world right now. Recently, The RSDSA, along with American RSDHope as a co-sponsor, began hosting a series of Workshops led by Doctor Mark Cooper which are endeavoring to answer these questions.
When asked what connection neuroinflammation had to CRPS, Dr. Cooper said "The evidence is substantial that CRPS is a neuroinflammatory disease. The evidence that CRPS has an autoimmune component is also substantial. However, the link between autoimmune and neuroinflammation needs to [be] further established." When asked if there was any move underway to change the name of CRPS because of the possibility of neuroinflammation being involved, Dr. Cooper's response was "There is no move to change the name of CRPS".
We wanted to include some of the videos from that Workshop so that you could see exactly what was discussed. You will find them very interesting. Feel free to share these links, or the link to this page, with your physician.
1) Opening Remarks by Mark S. Cooper, PhD, University of Washington - Doctor Cooper, one of the organizers of the Conference, Introduces the Workshop and discusses the Native American Connection to the Venue
2) Judith Kitzes, MD, MPH, Univ. of N.M. discusses a topic of extreme importance to all CRPS/chronic pain patients that has been in the news a great deal lately; Medical Education in Opiods and the Management of Pain.
3) Scientists, Clinicians, and people with CRPS and other pain syndromes discuss the workshop and the next steps.
RoundTable regarding Imaging Neuroinflammation Workshop.
4) Vincent Clark, PhD, Univ. N.M. Department of Neurosciences discusses Neuroimaging, Neuroinflammation, and Neural Information Processing.
5) Peter Moskovitz, MD, Chair of RSDSA Board of Directors, discusses the Importances of a Research Knowledge Consortium for Neuroinflammation.
6) Ralph James, Ph.D, Brookhaven National Laboratory discusses Next Generation of SPECT/PET Imaging Tools.
7) James Giordano, Ph.D, Potomac Institute for Policy Studies, Arlington, VA discusses The Social Dimensions of Pain.
8) Joshua Prager, MD UCLA, Los Angeles, CA discusses Clinical Applications of Neuroinflammation Imaging and Neuropathic Pain: Medical Compensation Issues.
9) Karen Davis, Ph.D, University of Toronto, Canada discusses Central Mechanisms of Pain: fMRI Analysis.
10) There is also an article written by Dr. Cooper on Neuroinflammation you will find interesting that should be included in this section; Imaging Neuroinflammation, An Important Advance for Pain Medicine ; from the American Academy of Pain Management Newsletter.
CRPS VIDEOS - ASSORTED MEDICAL SUBJECTS
AQUA THERAPY AND CRPS - In our Physical Therapy section we discussed the importance to the CRPS patient of keeping the body moving; the old adage "move it or lose it" applies but "no pain no gain" does not. Every time I hear the second one, I remember Dr Hooshang Hooshmand saying "No pain is ALL the gain"!
Here we have three video submissions showing how Aqua Therapy can be used to help CRPS patients. The keys are movement and a warm water pool. You don't have to go to a physical therapist to do exercises in a pool, but you do need to do the exercises in a warm water pool, the water needs to be over 83 degrees and usually no warmer than 88 degrees or fatigue can set in too quickly. For more on the temperature aspect and how cold affects CRPS you can refer to Melanie Swan's article and/or the article regarding Ice and CRPS.
AQUA THERAPY - The RSDSA is pleased to bring you the first of a two-DVD educational program on how to implement a functional restoration treatment program for children and adults with CRPS. They were kind enough to allow us to share the information with us and allow us to share it with you. Here is the LINK to the video. Lee Rosenzweig, DPT, PT, CT, of the Hospital for Special Surgery.
MEDICAL Drs DISCUSSING VARIOUS PAIN TOPICS
Pain Patients Shouldn't Try To "Tough It Out" - Here Dr. Portenoy explains why it is important that patients in chronic pain need to be able to share with their Drs the extent of their pain. If they can't do it themselves then they should bring someone along who can help speak for them and address their pain.
TED - IDEAS WORTH SPREADING - Elliot Crane - The Mystery of Chronic Pain
We think of pain as a symptom, but there are cases where the nervous system develops feedback loops and pain becomes a terrifying disease in itself. Starting with the story of a girl whose sprained wrist turned into a nightmare, Elliot Krane talks about the complex mystery of chronic pain, and reviews the facts we're just learning about how it works and how to treat it.
BTW, if you have never been to the "Ted - Ideas Worth Spreading" website, I urge you to visit. We use them on our website, in talks at conferences, and at our local schools and churches even. There is a wide variety of subjects and an even wider variety of speakers!
American RSDHope does not endorse/condone any particular therapy, hospital, clinic, therapist, or physician or videos by their posting here or any that are visited through these links. They are posted for your enjoyment and we hope you find them helpful in some way as well.
CRPS AUDIO SUBMISSIONS - Radio Interviews
You can hear Keith Orsini's 2011 Radio interview by reading the information below and clicking on this link.
Here is the first in a series of Audio submissions;
CRPS AWARENESS 2012 RADIO INTERVIEW - KEITH ORSINI
1) BlogTalk Radio Interview with KEITH ORSINI, one of the Founders of American RSDHope - November 2012
Keith Orsini, one of three co-founders of American RSDHope, was a guest on Blog-Talk Radio for National CRPS Awareness Month 2012. Keith co-founded the organization with his parents Robert and Lynne Orsini, known to most in the CRPS community as Mom & Dad O., back in 1995, though they had been working before that as the Maine RSDS Patient Advocacy Group as well as helping patients and their families for more than a year.
The date was November 28, 2012 at 2 pm EST, 1 pm CST, and 11 am on the west coast.
If you would like to listen to KEITH'S INTERVIEW CLICK HERE
If you have any questions on anything you hear on during the interview please take notes and then visit American RSDHope.
BTW, if you have not visited Blog Talk Radio I urge you to drop by the website by clicking on the link. Marla has interviewed some fascinating and very helpful people on a wide variety of topics, a very wide variety. There absolutely is something for everyone and not just the typical pain topics but also Motherhood, Surviving Suicide, Fibromyalgia, Migraines, Autism, Rehabilitation, and much more.
Peace, Keith Orsini
American RSDHope
PS - If you would like to learn more about the Orsini's and/or how American RSDHope got started be sure to check out the About US Drop-down Menu.
2) BlogTalk Radio Interview with KEITH ORSINI, one of the Founders Of American RSDHope - November 2011
This is an interview that was done on November 17, 2011 by Coach Marla on Blog Talk Radio. She interviewed Keith Orsini, one of the Founders of American RSDHope Organization and a long-term CRPS patient. Keith and his family founded the National non-profit organization to benefit CRPS patients and their families. To hear the interview click here!
American RSDHope works with the other national non-profit CRPS organization, the RSDSA based in CT, to further research into the cause of the disease, possible connections to other diseases, and bring together top researchers from around the world. Their efforts to raise awareness of not only CRPS but chronic pain in general, as well as their work with SSD and Legislatures across the country, the families of the patients, and CRPS support groups and Pain Support groups across the United States have gone a long way to changing the face of this disease.
Keith gives credit to the many, many thousands of patients and loved ones who have given their time and money over the years to try and alleviate the pain and suffering of so many. When you add in some of the most amazing physicians and researchers in the medical community to the mix, you have an unbeatable combination. We may not have a cure yet but compared to where we were ten or even five years ago, the difference is amazing. Who knows what the next decade will bring!
3) We also added the BlogTalk Radio interviews for Diane Sanor, former Nurse and current five decade plus CRPS survivor, here in about a week as well. BUT, if you want to listen to her interview LIVE you can hear in January. (it was due to run on December 6th but due to illness was postponed). If you would like to listen in, go to BLOGTALK RADIO where you can either just listen in, call in, sign into facebook, etc. You just have to be there about five minutes before the show starts. It is an Internet radio show so you need to go to the website listed above for details on listening to the interview, or come back here afterwards to listed to it and we will have the link. You cannot tune it in on your radio ;-D
