- Advocate Spotlight, Jason Wilkes
- POPF response to the movie CAKE
- Celebrity Spotlight, Derek Amato
- Patient Spotlight, Ritchey Family
- Provider Spotlight, DRC/KRC
- Aunt Barby’s Invisible, Endless Owie
- TMJ Connection, Gary Demerjian
- Hart brings Pain to Nascar
- P A Shuffle (Prior Authorization)
- Goals of Pain Therapy
- Report Unwanted Side Effects
“As a patient advocate and also as one who battles with an arduous health condition (Complex Regional Pain Syndrome or Reflex Sympathetic Dystrophy), I have been involved in several conversations regarding the need for a “magical pill” that eliminates all suffering
– J. S. Wilkes, POPF Executive Board Member and affliction. After much deliberation, I am confident that I have found such a pill. I present this P.I.L.L. philosophy only as a Polite Invitation for “Living” Longer. CRPS/RSD has a nasty reputation of taking a person’s life away but leaving them still breathing. By sharing this philosophy, I hope that those suffering can also apply this in their own lives, become empowered and take back control. While it may not solve everything, discovering your P.I.L.L. will help you heal and live a more fulfilling and functional lifestyle.”
WHAT IS YOUR CAKE?
As a leader in the pain community and someone who personally advocates for pain patients on a daily basis, I strongly believe that we can combat the issues of abuse while still giving patients who need pain relief a safe, effective and accountable access to these medications. With many new medications, private and government insurers put limits that make it difficult to access the medicines. With the societal cost of limiting pain management so high, such an approach is penny wise and pound foolish. There are many things we can do to increase access to these treatments, but we need to start with the recognition of their value and the promise they hold for many pain patients who have been denied care due to suspicion.
Read the entire article here… Cake Response by Barby Ingle
Hear “The Script” now and get your copy from ITunes. We hope you love it as much as we do.
Derek Amato Becomes Musical Genius After Brain Injury; becomes advocate for invisible disabilities, homeless, and more!
The amazing musical genius, Derek Amato is not only able to touch us all with his heart and soul, his activism takes his acquired talent to a whole new meaning. Even Derek is still amazed that he acquired musical talent as a result of his traumatic brain injuries. His official diagnosis of acquired savant syndrome, is extremely rare. To the Power of Pain Foundation, we see him as a sort of superhero.
Derek is the only man in the world to have acquired genius-level musical talent after getting a TBI. Mayo Clinic’s Dr. A Reeves said, “Amato has a rare condition called acquired savant syndrome”. Acquired savant syndrome is a condition where “dormant savant skills emerge, sometimes at the prodigious level, after a brain injury or disease…where few such skills were evident before.”
“As I shut my eyes, I found these black and white structures moving from left to right, which in fact would represent in my mind, a fluid and continuous stream of musical notation,” Amato writes in a blog post. “My fingers began to scale the piano keys as if I had played all of my life. I can’t explain the feeling of awe that overcame my entire being, although I can tell you the expression on my friend’s face was enough to put us both in tears”, says Derek.
At the Power of Pain Foundations 8th Annual National PAIN Summit in November 2014, he said that, though he experiences headaches and light sensitivity as a result of the injury, he wouldn’t change his journey for anything. When asked what he would do if he suddenly lost his musical gift, he said that he would still be equally grateful for the experience.
In November 2012 Tiffaney (my wife) moved to Scottsdale, AZ to be a patient in a ketamine trial for her treatment resistant depression. Tiffaney had struggled for years with depression and getting no relief until low dose ketamine infusions from Depression Recovery Centers. We believe the infusions saved Tiffaney’s life and as a family, decided to move to North Scottsdale, AZ to be close for the boosters she would need. We all love Phoenix and were excited about a new beginning for our family. We moved into an apartment in North Scottsdale in April 2013 that had large amounts of water damage. Much of the water damage had just been painted over and repairing water leaks with improper maintenance. After a short time had past we all started getting sick with stomach issues. Our first thought was a bug being passed around. As time went on we became more sick with much fatigue. One day Tiffaney saw mold in the return air plenum when I was changing our air conditioner filter. It was after that, things became more clear. Other health issues were taking place from the mold, but to many to list here. Tiffaney asked the doctor if the mold could be causing our breathing issues. Most mold patients have an average of 18 things going wrong in the body and some can be fatal. The doctor wrote a letter for us to vacate the apartment immediately. The doctor suggested our apartment needed to be professionally tested. Tiffaney hired an environmental hygienist to test the apartment the next day. Environmental test results came back with extreme high levels of toxic molds, including a black mold called Stachybotrys. Stachybotroys produces a powerful mycotoxin which has been used in biological warfare (Agent Orange) called tricothecene. It is this poison that has caused our family so many different illnesses including chronic pain. Our son Garrett, Tiffaney, and myself have struggled with depression and terrible chronic pain in our backs, joints, skin, and muscles since the exposure to toxic black mold. Tiffaney also developed polyneuropathy, her myelin sheath that protects her nerves has been damaged. It was difficult to even apply pain cream on each other because the pain from touching the skin was intolerable. Our son Garrett has been bed bound most of the last 1.5 years. Garrett has even used a walker and we helped get him in and out of bed. A thousand words would not explain the frustration of trying to deal with everything that needs to get done while in severe chronic pain. We have tried everything to deal with this horrible pain and getting no relief from prescribed medications and physical therapy until Ketamine infusion therapy. The pain relief we have found through Ketamine infusions has given us hope of a more enjoyable life. We feel like we have turned a new page in life. Ketamine Recovery Centers saved Tiffaney’s life once and now they are doing it again for our family. Much is owed to the staff at Ketamine Recovery Centers and as patients we recommend Depression Recovery Centers for Ketamine Infusion Therapy. Our goal in life is to help others who deal with chronic pain, depression, or toxic black mold poisoning find answers and medical care.
MOST people who are depressed or in pain, settle for a limited life with symptoms that continue and medications that cause side-effects like weight gain and sexual dysfunction. When you or your loved ones are ready to try something better, help is just a phone call or email away.
“Ketamine powerfully reverses structural changes in the brain that occur when someone is depressed. In a sense, the treatment is repairing or reversing those changes.”
Aunt Barby’s Invisible, Endless Owie
Sometimes, explaining chronic pain to children is difficult, especially when the cause of the pain isn’t clearly visible.
This hardcover book helps kids understand that people with chronic pain conditions often need special care, but that doesn’t mean they don’t like to have a good time. It talks about ‘Aunt Barby’ coming for a visit and how to get the house ready for a special kind of guest.
E-mail: firstname.lastname@example.org Burbank Office: (818) 238 9865 Glendora Office: (626) 852 1865 www.tmjconnection.com
TMJ disorders have been called the “Great Impostors” because many of the symptoms have overlapping characteristics, which often mimic other conditions. Indeed, it is quite common for people to seek the care of a medical doctor or medical specialist in search of a cure or answer. Most, however, never think to contact a dentist trained in TMD since the symptoms are primarily medical in nature.
Do you suffer from any of these?
|• Headaches||• Jaw joint clicking or popping|
|• Facial Pain||• Neck pain or stiffness|
|• Jaw joint pain||• Worn, loose or sensitive teeth|
|• Limited ability to open and close your mouth||• Difficulty eating, chewing or swallowing|
|• Dizziness or vertigo||• Pain whenever you talk or smile|
|• Earaches (or ear congestion)||• Poor posture|
Donate to help Hart bring pain awareness to future Nascar races.
The Power of Pain Foundation works to develop a standardized prior authorization form for prescription drugs, not to exceed two pages in length, and to make the form electronically available and transmissible in every state. The bill would also allow for the electronic notification of the approval or denial of the authorization request.
The Power of Pain Foundation, strongly supports legislation which will streamline the prior authorization process, benefiting physicians (and their staff), pharmacists, and, most importantly, patients.
Pain management is an ongoing process, not just a one-time concern. Finding the right combination of therapies may take time, but often makes the critical difference in your care.
Your pain management team will work with you to map out a treatment plan tailored to your specific needs. Successful pain management aims to:
- Lessen the pain
- Improve functioning
- Enhance your quality of life
These are considered the hallmarks of pain management and “best practices.”In some cases, pain is best managed using a combination of treatments. This is referred to as a “multi-modality” approach. For example, your healthcare provider may prescribe a medication along with activities to reduce stress (e.g., yoga, deep-breathing exercises). To improve daily functioning, specific therapies may be suggested to increase muscle strength and flexibility, enhance sleep and reduce fatigue, and assist you in performing usual activities and work related tasks.
Tips to Help Cope With Chronic Pain
- Don’t smoke. It can worsen chronic pain.
- Learn deep breathing or meditation to help with chronic pain.
- Reduce stress in your life. Stress intensifies chronic pain.
- Boost chronic pain relief with the natural endorphins from exercise.
- Cut back on alcohol, which can worsen sleep problems.
- Join a support group. Meet others living with chronic pain.
- Track your pain level and activities every day.
- Learn biofeedback to decrease pain severity.
- Eat a healthy diet if you’re living with chronic pain.
- Find ways to distract yourself from pain so you enjoy life more.
Name: Thomas L SanNicolas, CIV USA IMCOM aka Santa
Dates of Service: active duty service dates 2/1996 – 2/2006 and civilian service to the US Army from 2006 – present
Branch of Service: United States Army
Pain Condition: Multiple Injuries, Post Surgical Pain
This month’s recipient of the #POPFHOV project is being honored for his 15 years of active duty service dates 2/1996 – 2/2006 and civilian service to the US Army from 2006 – present. Santa sustained multiple injuries during his active duty service for our country. He underwent 6 surgeries on his left ankle, leaving no cartilage. The German doctors tried to incubate his cartilage by sending it to Italy but with no luck. This led to Thomas being Med Boarded out the Military. He still serves as a civilian for the US Army at Ft. Belvoir, Virginia Army base. Santa passes on this advice to service members, “if you are hurt, go to sick call. I was very HOOAH HOOAH and did what I was taught to do in the military – suck it up and drive on. You have to take care of number 1 – Yourself because when it’s all said and done your just a number.”
If you have been selected to be a part of the HOV program and would like to be a guest on Burning For A Cure radio show, please complete this form.
- Jerry Mathers (DPN) PSA
- Depression Recovery Center
- Body Parts on a Chip
- Small Revolution in Medicine
- Mystery of Chronic Pain
- Look Inside the Brain in Real Time
- Meet Your Microbes
- Is the obesity crisis hiding a bigger problem?
- P.A. Shuffle
- Faces of Pain 6, (Bilingual)
At Depression Recovery Centers, we believe in taking a holistic approach for treating depression. After our initial evaluations, our multidisciplinary team will assist you in developing a personalized plan of action for treating your depression, including: Ketamine IV Treatments, psychotherapy sessions with your personal therapist, and development of a wellness plan.
It’s relatively easy to imagine a new medicine, a better cure for some disease. The hard part, though, is testing it, and that can delay promising new cures for years. In this well-explained talk, Geraldine Hamilton shows how her lab creates organs and body parts on a chip, simple structures with all the pieces essential to testing new medications — even custom cures for one specific person.
Vince’s passion is to understand the human brain. He has spent the past three decades focusing on brain research. He is the founding Director of the newly built Clinical Neuroscience Center in the Department of Psychology at the University of New Mexico (psych.unm.edu), and is an Editor for NeuroImage, the most highly cited journal in the field of neuroimaging. Vince’s most important occupation is caring for his children. His 11 year old son was diagnosed with a pain syndrome two years ago. This started him on a journey to find and validate new methods to alleviate suffering in people with brain and mental illnesses. He hopes to help begin a “small” revolution in medicine, finding more practical methods of diagnosis and treatment that are also safer, cheaper and more effective than what is currently available.
Chronic pain is pain that has lasted for a long time. In medicine, the distinction between acute and chronic pain has traditionally been determined by an arbitrary interval of time since onset; the two most commonly used markers being 3 months and 6 months since onset, though some theorists and researchers have placed the transition from acute to chronic pain at 12 months. Others apply acute to pain that lasts less than 30 days, chronic to pain of more than six months duration, and acute pain that lasts from one to six months. A popular alternative definition of chronic pain, involving no arbitrarily fixed duration is “pain that extends beyond the expected period of healing”.
Neuroscientist and inventor Christopher deCharms demos an amazing new way to use fMRI to show brain activity while it is happening — emotion, body movement, pain. (In other words, you can literally see how you feel.) The applications for real-time fMRIs start with chronic pain control and range into the realm of science fiction, but this technology is very real.
Not all microbes are pathogens. As Jonathan Eisen of the University of California of Davis points out, the health of our microbiome is vital to protecting us from disease.
As a young surgeon, Peter Attia felt contempt for a patient with diabetes. She was overweight, he thought, and thus responsible for the fact that she needed a foot amputation. But years later, Attia received an unpleasant medical surprise that led him to wonder: is our understanding of diabetes right? Could the precursors to diabetes cause obesity, and not the other way around? A look at how assumptions may be leading us to wage the wrong medical war.
Special thanks to Executive Board Member Twinkle VanFleet. Twinkle has dedicated her time to making this video bilingual. Making a difference together helps us all.
Power of Pain Foundation (POPF) provides community based support services that address needs of chronic pain patients with Neuropathy conditions such as RSD/CRPS, Post Cancer Pain, Fibromyalgia, Diabetic Neuropathy, and many more. Accordingly, beneficiaries include patients who are economically and socially affected by these invisible diseases. Whether you have Neuropathy pain or a caregiver, family member, or friend of someone diagnosed, we’ll help you face the challenges and life changes of chronic nerve pain, head on.
The RSD Quilt is dedicated to ALL patients and loved ones everywhere who has ever worked to spread awareness or to raise money for RSD. Doctors and Nurses, the support group leaders; all the fighters out there; this is for everyone who ever raised a hand against the monster called RSD. Most of all this is dedicated to all of those we have lost along the way who fought until they could fight no more.
Because of the amazing reviews we got from all of you, we’ve won another Top-Rated Award from GreatNonprofits. Check out our profile! We’ll be highlighted on the Top-Rated Page. The Huffington Post, TakePart and Parade Magazine will be referring their readers to check out Top-Rated Nonprofits in November. We also received this award in 2010, 2011, 2012, 2013 and now 2014. Congrats to everyone who helps make Power of Pain Foundation a success and have helped us grow over the past 7 years.