Real Love and Good Sex: for Chronic Pain Patients and Their Partners by Ms Barby Allyn Ingle and Mr Ken Ray Taylor

Posted by twinklev

Real Love and Good Sex: for Pain Patients and Their Partners by Ms Barby Allyn Ingle (Author), Mr Ken Ray Taylor (Author)

http://www.amazon.com/Real-Love-Good-Sex-Patients/dp/0615961010/ref=sr_1_1?ie=UTF8&qid=1403059408&sr=8-1&keywords=real+love+and+good+sex

I was honored to write the forward to this book.

Please keep in mind that the Ms Barby has Reflex Sympathetic Dystrophy and the tips she gives is her own, she’s not a sexual professional or expert. But a professional in her own life and sexuality living with a chronic, incurable, neuro autoimmune disease which affects the Central Nervous System, the Limbic System, Autonomic Nervous System, and most of all the Sympathetic Nervous System (also known as Fight or Flight) and multiple other bodily functions. The Autonomic Nervous System consists of both the Sympathetic and the Para Sympathetic. Depression is often a secondary diagnosis to RSD/CRPS, however that is not an issue here.

Barby and Ken attempt to help the reader or partner dealing with pain understand that the sexual component in a relationship is still possible. Perhaps not each and ever moment of the day, but that it is possible. Sex induces endorphin’s which in turn reduces chronic pain.

I am in my 14th year with this same disease.

All things are possible. You won’t know if you don’t try.

Fight for Tomorrow

Posted by twinklev

Always have faith that a better tomorrow will come. We have to or we won’t survive. The life of chronic pain becomes a family disease. In the last few months we have lost over a dozen people in the CRPS/RSD community. At least half to suicide. Most people do not premeditate their suicide. Many do experience suicidal ideations. It has been noted by professionals that “wanting to die or commit suicide” and suicidal ideations are not the same”. If they were more of us would be evaluated and helped before we get to the point of knowing our pain is never going to managed and into the sudden taking of our own lives. When it happens it is often spontaneous. There will have been signals and signs misread. There is always a cause and there will always be an affect. So many are not afforded proper medical care to reduce pain levels. Opioid medications, such as Hydrocodone, continue to be well versed as a gate way drug to harder and heavier medications such as Oxycodone. It has been said a like a broken record over the past decades that Marijuana and narcotic use causes a person to become high risk for Heroin use. I do not believe this to be true. I do believe it’s possible in some personalities. Addictive personalities perhaps, but this does not include our entire population. I am offended for honest chronic pain patients that need pain care who have been dismissed as drug seekers. I am offended by good providers whose practices have been raided for prescribing Opioid medications.

It’s not the Opioid itself that is the epidemic in our society, it is the person who does not take it exactly as prescribed which can lead to abuse and misuse. Re evaluate the patient for possible addiction or consider another pain management plan of action. Either way they need help!

If pain patients aren’t taken care of and the pain cannot be controlled..

The number of deaths continue to rise. The epidemic will be chronic pain related suicides.

Your autopsy report will probably read.. as a result of depression, misus, abuse or other. There will be nothing about really happened. There will be nothing about the fact you couldn’t get pain relief and your last, very last resort was taking your own life.

DEA.. You don’t know pain until you’ve contemplated.

Speak up and speak out!

Let there always be a tomorrow. Fight for your tomorrow!

Power of Pain Gets Ready for September: Pain Awareness Month

Posted by twinklev

Pain Awareness Month is right around the corner. September is always a busy time for most of us. These are just a few of the Power of Pain Foundation’s events and activities during that time. Please feel welcome to join in on the events you are able to. We have other’s we are involved with from State to State. We look forward to all that you are doing for the mutual cause we share as well as the hope and fight for a cure we all work so hard for when raising awareness. If you have an event you would like me to share, please feel free to contact me.

I wish you pain eased days and nights, ~Twinkle V.

September is Pain Awareness Month!

PAINWeek 2013

WHEN:
September 4, 2013 – September 7, 2013

WHERE:
Cosmopolitan of Las Vegas
Las Vegas
NV
USA

CONTACT:
PAINWeek 973-415-5100
info@painweek.org
Event website: www.painweek.org

EDUCATION
Lyme MS Neuropathy Pain RSD
Audience: physicians, physician assistants, nurse practitioners, nurses, pharmacists, psychologists, hospitalists, dentists, social workers, and podiatrists

The PAINWeek 2014 Schedule at a Glance is now available! Debuting this year will be two new course formats to broaden the educational experience for our attendees:

Frontline Practitioner Focus will delve into the practice challenges that are particular to provider types and practice settings, including hospitalists, nurses, pharmacists and physician assistants
Clinical Conundrums will present case-based examinations of assessment and diagnosis, and criteria for specialist referral in the pursuit of better treatment outcomes

info@painweek.org

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Chronic Pain Solutions Webinar Series
Online
CONTACT:
Power of Pain Foundation

480-882-1342

Please register for Chronic Pain Solutions on Jul 24, 2013 5:00 PM PDT at:

https://attendee.gotowebinar.com/register/7262827706450704128

Dr. Daniel Twogood, D.C., has been practicing chiropractic medicine in Southern California for 30 years. The doctor will describe 10 steps necessary to lower or eliminate chronic pain. This program does not work for everyone, but is noninvasive and we hope that attendees take away a few good pointers from it. This webinar not a cure, it is a tool to help people manage their chronic pain.

Dr. Twogood will discuss that chronic pain is caused by ongoing inflammation which is caused by specific substances in the diet, food additives & medication. He was also on the blogtalk show Living with Hope, sponsored by the Power of Pain Foundation in May 2013.

Over 100 million Americans suffer with some form of chronic pain such as back pain, fibromyalgia, migraines and arthritis. His book is easy to read and lists the ten steps necessary to eliminate chronic conditions fibromyalgia, headaches, psoriasis, Crohn’s disease and more, based on this doctors findings over all the years he has been practicing medicine.

Where conventional medicine isn’t always effective, Dr. Daniel reports that relief is available by following these 10 steps outlined in his book. Most patients he works with recover well before 90 days.

After registering, you will receive a confirmation email containing information about joining the webinar.

The Power of Pain does not endorse the presenter or their products. This is being offered as a tool that people in pain and their caregivers can listen to, ask questions, and start a discussion.

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POPF’s P.A.I.N. Summit 2013

WHEN:
September 14, 2013 @ 8:00 am – 4:00 pm

WHERE:
Scottsdale Healthcare Shea Conference Center
9003 East Shea Boulevard
Scottsdale,AZ 85260
USA
COST:
Free

ONLINE and in PERSON

CONTACT:
Power of Pain Foundation info@powerofpain.org

The 7th Annual P.A.I.N. Summit hosted by the Power of Pain Foundation provides a great avenue for pain education for providers, patients and their caregivers. This year’s conference consists of an exhibit area and educational sessions that focus on better diagnosis and treatment options for pain patients, chronic pain issues (as a whole), prescription monitoring programs, and Proper Opioid Management. There will be breakfast, lunch and afternoon snack provided to attendees.

The event will be hosted by Brittany Brannon, Miss Arizona USA 2011, model, and RSD patient. The event will also feature two celebrity speakers, Dr. Natalie Stand, MD winner of the Amazing Race, and WWE star and professional wrestler, Raven.

The day will consist of two sessions.
8am – 1:00pm The morning sessions are focused for healthcare providers. This includes all areas of expertise; anesthesiologists, complementary medicine specialists, emergency room, general practitioners, internal medicine, neurologists, nurses, orthopedics, pharmacists, physiatrists, physician assistants, primary care physicians, psychiatrists, surgeons, and therapists. Any clinician who practices, or is interested in practicing, pain management from an integrative perspective, will benefit from the meeting. HCP’s will be introduced to the rapidly expanding field of diagnosis and treatment. This conference will proved attendees a greater awareness and understanding of the need to appropriately identify, diagnose (HCPs only) and treat/seek treatment of common types of pain, including fibromyalgia, painful diabetic peripheral neuropathy and other chronic pain conditions.
1:30pm – 4:30pm The afternoon sessions will be filled with patients and their family/ caregivers. This portion of the conference will provide attendees a greater awareness and understanding of the need to appropriately identify, and treat/seek treatment of common types of pain.

There is no charge to attend this conference.
Schedule (tentative)
HCP Sessions
8:00 am – 4:00 pm Ongoing Registration Breakfast served Hosted by Brittany Brannon
8:15 am – 9:00 am Keynote address: Preventing complications that arise from diabetes such as peripheral neuropathy (pain)
Dr. Natalie Stand, MD, Amazing Race Winner, USC Pain Clinic
9:10 am – 9:55 am An Integrative Approach to Chronic Pain Dr. Philip Getson, DO, Drexel University, Philadelphia, PA
9:55 am – 10:40 am Cultural Competency and the Patient in Pain Dr. Maged Hamza, Virginia Commonwealth University
Pain Clinic Director, Richmond, VA
10:40 am – 11:20 Evidence Based Chronic Pain Care Linda Watkins, PhD, University of Colorado
11:20 am – 12:00 Complementary Medicine and its role in Chronic Pain Management (TBD)
12:00 pm – 1:00 Open Discussion with the Speakers and Attendees Lunch is served, Exhibitors

Patient/ Caregiver Sessions
1:30 pm – 2:30pm An Integrative Approach to Chronic Pain Dr. Philip Getson, DO, Drexel University, NJ
2:30 pm – 3:15 pm Prescription Drug Monitor program Explained Rob Kronenberg, PharmD
3:15 pm – 4:00pm The Patients Perspective; At Home Pain Coping Skills Raven WWE Wrestler, Barby Ingle Power of Pain
Foundation, and Diane Kennelly AZ Fibromyalgia Group Leader

If you are unable to attend in person, you can attend by watching our UStream Channel
http://www.ustream.tv/channel/power-of-pain-foundation

——————–
AANEM 60th Annual Meeting
WHEN:
September 17, 2013 – September 20, 2013

WHERE:
Montreal
QC
Canada

Event Website- http://www.aanem.org/Home.aspx

American Association of Neuromuscular & Electrodiagnostic Medicine

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American Academy of Pain Management

WHEN:
September 26, 2013 – September 29, 2013

WHERE:
JW Marriott Orlando
4040 Central Florida Parkway
Orlando,FL 32837
USA
CONTACT:
209-533-9744

Event Website-

http://www.aapainmanage.org/conference/annual-clinical-meeting/register.html

The American Academy of Pain Management’s 24th Annual Clinical Meeting

Come for the education, the experience, and the pure enjoyment!

Join us at the Academy’s 2013 Annual Meeting, Exploring the Science, Practicing the Art and expand your knowledge and understanding about pain management, meet some of the most forward-thinking experts in the field, gain practical hands-on experiences, and have a great time!

Who Should Attend – Any clinician who practices, or is interested in practicing, pain management from an integrative perspective, will benefit from the meeting.

—————

Institute on Psychiatric Services

WHEN:
October 10, 2013 – October 13, 2013

WHERE:
Philadelphia
PA
USA

Event Website- http://www.psych.org/

—————-

ASA Annual Meeting

WHEN:
October 12, 2013 – October 16, 2013

WHERE:
San Francisco
CA
USA

American Society of Anesthesiologists

847-825-5586

Event Website- http://www.asahq.org/

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NERVEmber

2013 Scottsdale Headache Symposium

WHEN:
November 13, 2013 – November 17, 2013

WHERE:
Scottsdale
AZ
USA

CONTACT:
American Headache Society
Event Website- http://www.achenet.org

——————-

Comic Pain Relief

WHEN:
November 8, 2013

WHERE:
Chandler Center for the Arts
250 North Arizona Avenue
Chandler,AZ 85225
USA

CONTACT:
Power of Pain Foundation 480-882-1342
info@powerofpain.org

Event Website: http://powerofpain.org/
Comic Pain Relief 2013 presented by the Power of Pain Foundation for NERVEmber. More Info to come!

Comic Pain Relief is a charity show to help raise awareness of chronic pain issues through a great social event using comedy. The event is open the public.

The Comic Pain Relief show will take place to help raise proceeds and support for low income and under-insured patients who are affected by chronic pain conditions such as Post Cancer Neuropathy, MS, Lyme Disease, Diabetic Neuropathy and Reflex Sympathetic Dystrophy.

Neuropathy pain conditions affect people of all ages, and races. There are over 100 million Americans with Chronic Pain.

Ken Taylor
Ken is the Executive Director of the Power of Pain Foundation, and an expert on several neuropathy conditions. Ken@powerofpain.org

Through Our Motivation For a Cure, We Turn Pain Into Power! ©powerofpain

2013 CRPS/RSD Awareness Walk hosted by Dr. Philip Getson, DO

Posted by twinklev

2013 CRPS/RSD Awareness Walk

This year’s walk is hosted by Dr. Philip Getson, DO and the Chairman is Dawn Hesser.

Date: Saturday, September 21, 2013
Location: Cooper River Park, Pennsauken Twp., New Jersey
Time: 8 am Registration, 9 am Walk starts
Registration: Click Here to register for the walk
Contact: Jim Broatch jwbroatch@rsds.org or 877.662.7737
Questions please email: crpsrsdwalk@gmail.com

Executive Vice President and Director
The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)
99 Cherry Street
Milford, CT 06460
www.rsds.org
877-662-7737
203-882-8362 (f)

RSDSA :: Reflex Sympathetic Dystrophy Syndrome Association

www.rsds.org

Macy’s Shop for a Cause Saturday, August 24, 2013 Please help RSDSA provide education, support, and hope to all http://www.rsds.org/index2.html

Macy’s Shop for a Cause at RSDSA

The above walk is hosted during Pain Awareness Month. Please be supportive!

~Twinkle V.

A New Beginning: My Life with RSD

Posted by twinklev

A New Beginning: My Life with RSD.

The above blog belongs to featured Blog Talk Radio Host Trudy Thomas.

The Living with HOPE Radio Show is Sponsored by the Power of Pain Foundation.

Living with HOPE began in 2007 under the original title Living with RSD. It was Trudy’s hope to learn more information about her own health issue, the debilitating and painful illness RSD/Reflex Sympathetic Dystrophy and with that a show was born. Trudy interviews doctors, therapists, caregivers, and patients; both traditional and alternative practitioners with expertise that runs from prevention to cutting edge technology.

Trudy empowers, informs and educates her listeners with information that may not be readily available in their local area. Through the power of the internet she has the ability to communicate with and speak to some of the most knowledgeable doctors and researchers in the world.

Some Topics have included: Meditation, Biofeedback, Guided imagery, Relaxation techniques, Breathing exercises, Holistic healing, Coping strategies, Distraction, Depression, Spinal Cord Stimulation (SCS), Pain Management, Medications, Chronic Pain Treatments, Ketamine, Calmare (Scrambler Therapy), Cortical Integrative Therapy (CIT®), Mirror therapy (Mirror Box), DMSO, Low Light Laser Treatment Therapy (LLLT), Functional Restoration, IVIG, Neuropathies, RSD/CRPS, Neuro Inflammatory Disease (NID) and much more.

For more information on how you can listen or even call in please click HERE.

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Listeners are encouraged to call in to ask questions of the guests during the show 1-347-884-9691, and if you miss the show you can listen later by clicking on the play button or downloading the shows archive. If you are on the go, you can call into the show through your home phone or cell phone at the above number and listen live. To speak with the host or ask the guest a question press 1, you can still listen to the show while waiting to go on the air, don’t hang up! Your questions and comments are important! A chat room is also available during the live show.

Living With Hope is broadcast live on Monday’s 4:00 p.m pacific and Friday’s 9:oo a.m pacific.

You can post your questions in the chat room to be answered on air. If the time is not convenient to stop by the live shows, you can listen to the archives at any time on the radio page.

Savy Seniors, Trudy’s newest show is live on Wednesdays 3:00 p.m PST. with co-host, Sharon Rowell covering all the latest news about health, medicine, safety, care taking and programs that are available to help seniors live a fun, productive and long life.

And, for fun of course Trudy does a Saturday show, 3:00 p.m PST, with readings from spirit given by Seers of the Soul and lots of fun music from the 50′s-80′s. Oldies but goodies.

If you are interested in being a guest on any of these shows, please email Trudy at goldfield_nv@hotmail.com.

Gall Bladder Fiasco Continued and hopefully the Final Chapter!

Posted by twinklev

The first part of this story can be found here https://rsdadvisory.com/2013/05/18/endoscopic-retrograde-cholangiopancreatography-52113-due-to-gall-bladder-removal-fiasco/ shared May 18th. I had my ERCP that showed I had Gall Stones hanging out over by the piece of Gall Bladder that was adhered to my liver since March of 2012 when I originally had it removed. The test also showed the lining of my stomach and surrounding areas were severely inflamed. I was given another diagnosis of Gastritis. So of course I waited to see the surgeon again and get my surgery date scheduled. It was scheduled for July 10th, 2013. 1 week ago today!

The surgeon told me that he would try to remove it first like the last time. I would have 4 small incisions. If he couldn’t get it he would have to do a larger cut. I was scheduled for a Laparoscopic Completion, Cholecystectomy, Possible Open, Possible Cholangiagrams. I signed the forms! I had to arrive at Mercy General Hospital at 5:30 a.m that morning for 7:30 a.m surgery. The surgeon told my husband to give him 4 hours, but that he could be done in an hour and a half, but not to worry until the 4th hour. I headed into the OR.

Now I have to laugh about this because I felt my hand zing and then zing again. They were putting me to sleep! But I didn’t go to sleep. So the Anesthesiologist ask me what I did for a living and I went on to babble about RSD/CRPS awareness, educating, working for the Power of Pain, I just chatted them right up and I know they were waiting for me to go down, even gave me more a few seconds or so before, I felt it. I remember looking off and thinking I’m going to go to sleep now and started to say it, but then I woke up in recovery with worse pain than the first time.

I still have swelling, a lump above my top incision that hasn’t gone down yet. When my doc called me the day after my surgery to check up on me, I told him about it, he said it was because that’s where he beat me up the worse. Funny! I laughed! That is where he had to use the tools and manipulate inside me to peel that piece off my liver, he said it should go down in a few days. I hasn’t yet though. I tried to drop the pain medication yesterday and switch to OTC NSAIDS but when I woke this morning I was hurting so bad from the top incision/lump to the side ones. A feeling of being inner bruised. Understandable really. So I’ve switching back and forth from Norco 10/325 to 4 OTC Ibuprofen. The Ibuprofen will help the inflammatory more than Norco will. Tylenol doesn’t touch that type of pain for me.

I was also mentioned to me that I have Crohn’s Disease. It’s a lot to process. My Gastrointestinal problems have become so bad that it seems the likelihood of internal CRPS is more my situation. I’m not going to mention all the symptoms right now, I’ve mentioned some of them in my group, on my facebook timeline, I just really need to find a doctor, a GI or Internal Medicine that is educated in RSD/CRPS, not one who has only heard of it. That was my experience with this surgery, a few heard of it, no one “knew” about it. My own primary doesn’t know “about” it. I had to educated him with just pieces as there is never enough time for it all.

I’m lucky to keep food down, even things to drink, I have to pick and choose carefully, the doc did also send me home with the generic for Prilosec to take a half hour before I eat anything first time each day. I either have diarrhea or can’t potty at all for weeks.

It seems the surgery has eased the pain over under my ribs on the right, but so far the mid back pain and other pain is still here. I had my SCS checked 2 days before my surgery by my Medtronic Specialist. It’s fine!

When the surgeon removed that piece of Gall Bladder it was full of fluid and was growing new tissue. He was able to remove several stones from that same area. The pathology is already back and it was negative for any cancerous cells.

On Monday when I had a follow up to my OBGYN due to inflammation found on my Uterus and the cyst(s) found on my right ovary which is larger than my left side and includes scar tissue as does my lower belly from left side to the entire right from an ectopic and exploratory surgery many moons ago. I opted for what I believe is called Nexplanon. I could have also tried the Depo or an IUD. Never again to an IUD for that is how I conceived my Ectopic twins. And I’ve tried Depo Provera and didn’t believe since these were my only options it was right for me. Normally the implant with is a small flexible tube is used as a form of birth control which can last up to 3 years and it stops the menstrual cycle. Yay! It was implanted beneath my inner left arm. The reason I opted for this was that my other option was a full Hysterectomy. This option buys me some time. I am not ready for more surgery yet. If at all. First of all it’s not safe for those of us with RSD/CRPS and secondly repetitive surgeries just aren’t safe for any of us. We always have to decide in the end what is best for us by weighing the pros and cons to it all.

If your doctors aren’t aware of your RSD/CRPS, please educate them. I do in pieces and portions but we only have so much time in each appointment. If need be take information and have it put in your file. In fact, that is exactly what I’m doing for my 24th follow-up with my surgeon and when I see the other’s next, same for them. My surgeon seems really great and caring. To call my husband at home to check on me and then asked to speak with me for a few moments even though I was resting, I respect that. You don’t get that much now a days. I think he will be appreciative, not upset or offended. Not the people should be, yet sometimes they are, especially when the info comes from no medical degree persons like myself. Some become quite offensive, also. They assume we think we’re know it all’s! Farthest from the truth! So I’ll hand off the info which will include more than 1 source and see which one actually has a broader perspective the next time I see him.

While I’m sure it’s happened before, no one from my surgical team had heard of it and no one from my doctor’s offices had heard of it…

Nor from my own communities online and off, family or friends.

I actually gave birth to a Gall Bladder twice! Just different sizes!

So glad it’s over and I’m on the path to healing again.

One down!

~Twinkle VanFleet

CRPS Survivor

Seeking Photos for the Video Slide Show Presentation “People Striving to Make a Difference in the Lives of Those Suffering and Surviving CRPS/RSD”

Posted by twinklev

People Striving to Make a Difference in the Lives of Those Suffering and Surviving CRPS/RSD.

Hi everyone!

I’m seeking Photos for a future video that will feature those of you who strive to make a difference in the lives of those with Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy.

Once all photos are in it will be fairly decided who will be featured in the video. Space will be shared with other’s who work just as hard yet has either never been or has rarely been recognized for their efforts. September is Pain Awareness Month and if all goes well this video will debut during that month.

Your photo can either be a head shot or a body shot. Send up to 2 photos, if you like!

Along with your photo, in the email body, please include:

1. Name, Foundation, Organization, Website Name, Blog Name, Radio Station, Etc. (You can also list all of the above)
2. City and State. (Or Province/ Country) (This video is not limited to the United States)
3. A brief bio on what you do (or have done) to make a difference in the lives of those suffering to survive CRPS/RSD. If the bio is too long it may be edited for space.

If you are a Mother or Father taking care of your CRPS/RSD diagnosed child, you are making a difference in the life of someone. If you are a child (adult or minor) of someone with CRPS/RSD and you are caring for your parent, you are making a difference, too.

In your email please add that you are giving me permission to use your photo and info. (I, (your name/organization), hereby give my permission to Twinkle VanFleet and RSD(S)-CRPS Advisory to use my photo and enclosed information for the Video Slide Show Presentation People Striving to Make a Difference in the Lives of Those Suffering to Survive CRPS/RSD that will be made public via YouTube.

I have personally invited a few people to be featured. If you do not get a personal invite from me this does not at all mean that I would not love to feature you. Please don’t feel shy or as if you aren’t good enough or haven’t done enough. You are just as important! This will be an annual project! No one will know from me if I’ve contacted you or if you sent on your own. That will be your business to disclose or not! ~smiles

Deadline– August 15, 2013. If you need a few day extension due to pain, please let me know before the deadline.

Please send to: submissions@crpsadvisory.com

If you have any questions, don’t hesitate to ask. 🙂

Thank you!
~Twinkle VanFleet

Independent RSD/CRPS Patient Advocate, Spokesperson, and Educator.

California Ambassador at the Power of Pain Foundation

Cortical Integrative Therapy with Dr. Victor M. Pedro on Living with HOPE Radio Show with Featured Host Trudy Thomas

Posted by twinklev

The following information has been taken from notes as a listener to the show and research, nearly all the words themselves belong to Dr. Victor M. Pedro. I take no credit for these. My goal is to get this non invasive seemingly promising information out so that other’s may find it a hopeful treatment program in their journey with CRPS/RSD, Chronic Pain, TBI’s and other illnesses and conditions.

Yesterday on the Living with Hope Radio show with Featured Host Trudy Thomas and Co Host Barby Ingle . Dr. Victor M. Pedro discussed Cortical Integrative Therapy (CIT®) a technique he uses and developed.

The entire show can be listened to here: http://www.blogtalkradio.com/thebodymindandspiritnetwork/2013/05/29/living-with-hope-with-host-trudy-thomas The Living with HOPE Show is Sponsored by the Power of Pain Foundation.

Dr. Victor M. Pedro’s career began as a Chiropractor and continued on with a Post Graduate in Functional Neurology. He says ” it was a very good starting point for brain function and innovative treatments that could begin to make a difference in peoples lives. He was fortunate enough to receive grant funding from the Rhode Island Legislature which permitted him to do a variety of studies and to study with significant people to get a more in depth and cutting edge picture of what was available in Neurology and how the brain functioned.

Trudy asked ” Does this therapy work for other conditions other than RSD? Dr. Pedro stated Yes! What he wanted his contribution to be is the person credited with creating an algorithm for understanding where in the nervous system to intervene.”

There are plenty of resources that will explain what a brain dysfunction is or pathology is, disease process or diagnostic procedure to figure out what folks are complaining about.

The rehabilitative model is where the challenge for the future lies.

Barby ask’s “Does every patient have a different algorithm? Or do you find they are similar with the same condition? The doctors answer’s ” By algorithm I mean a process we go about to evaluate what the affliction is or what’s wrong with the patient.”

Reflex Sympathetic Dystrophy or Dysautonomias in general are a condition Dr. Pedro has a particular interest in. With this condition he tries to find out how the autonomic system is dis-regulated or not working well and then his team tries to decipher in the patients does this person have Reflex Sympathetic Dystrophy (RSD) because the Sympathetic Nervous System is too high and not being inhibited or is it the Parasympathetic System that’s undergone demise and not effective.

“The treatment is actually different and makes all the difference in the world to the patients outcome, Dr. Pedro say’s.”

Barby ask’s ” Similar to Traumatic Brain Injuries (TBI’s) Would there be a different protocol for that?

Dr. Pedro answer’s “A different protocol in terms of how we’re going to add on different diagnostic pieces to the evaluation. Then we begin to identify precisely which modalities the patient needs. A TBI patient may have a similar pathology of an RSD/CRPS patient, may have similar findings, however we may go about the treatment process slightly differently.”

One of Dr. Pedro’s patients and a good friend of Barby Ingle’s just did an interview which will be released in this Saturday’s (June 1, 2013) edition of Pain Pathway’s Magazine. Please look for it!

Physical, emotional and nutritional needs are also taught this during treatment.

The autonomic nervous system delivers fuel to the body and brain. The autonomic nervous system is the automatic part of the nervous system that controls your heart rate, size of arteries delivering blood or fuel to the body and into our brain itself. This part of the body can be evaluated through a series of tests.

Someone with a compromise in their sympathetic nervous system may not have as much profusion as should be present. The long term consequences are considered regarding how this is effecting the tissue and that’s why the trophic changes present in this pathology.

Barby ask’s “Is maintenance treatment required or is this a one time process?”

Dr. Pedro states “The evaluation process takes 2 to 4 hours depending on the patient.” Based not only on tests, but the patients ability to participate.”

At the end of the evaluation we attempt to draw for them what we believe is wrong in the nervous system and make an educated hypothesis as to where the dysfunction is and what can potentially be done to correct it. A series of windows of observation, sympathetic, autonomic windows of observation more appropriately. We identify these at the end of the initial observation and we give the patient a treatment to see if their pain level comes down significantly or at least appreciatively.

That signals to us they are a good candidate for our program.

Dr. Victor M. Pedro is founder and president of Rhode Island Integrated Medicine, located in Cranston, RI. An accomplished, Board Certified Chiropractic Neurologist, Dr. Pedro pioneered the development of Cortical Integrative Therapy (CIT®)—a breakthrough, research-based treatment designed to address brain and neurological dysfunction in both children and adults.

After remarkable success using CIT® to treat school-age students diagnosed with speech, attention and learning disabilities, Dr. Pedro applied the treatment for use in patients with Reflex Sympathetic Dystrophy or CRPS, dysautonomias, and traumatic brain injury (TBI).

Over the years, Dr. Pedro has lectured extensively on CIT® as a non-invasive, cost-effective treatment for TBI, pain syndromes, dysautonomias, and other brain-related disorders.

Cortical Integrative Therapy (CIT®) has been successful in treating a wide range of painful and debilitating conditions including: ADD/ADHD; apraxia; ataxia; chronic pain; dystonia; dysautonomias; hypotonia; memory difficulties; movement disorders; Parkinson’s disease; Reflex Sympathetic Dystrophy (RSD)/Chronic Regional Pain Syndrome (CRPS); RLS; sciatica; traumatic brain injury; tremors; and vertigo, balance, and gait problems. ©Rhode Island Integrated Medicine

Other keywords in the interview- Inhibitory system, Renshaw cells, Autonomics, Small diameter fibers, Dysautonomias, Limbic system, Antonio DeMazio

http://corticalintegrativetherapy.com/ Cortical Integrative Therapy Rhode Island Integrated Medicine- The Brain Rehabilitative Specialists

http://corticalintegrativetherapy.com/blog/ NBC 10 Health Check Special Report: TBI & CIT® March 04, 2013

~Twinkle VanFleet, California State Ambassador Power of Pain Foundation

If I have mis stated any facts or quotes please contact me at: caambassador@powerofpain.org I will make any corrections immediately. Thank you!

Now I Lay Me Down… (An RSD/CRPS Poem)

Posted by twinklev

This poem is dedicated to all my RSD/CRPS brothers and sisters. It was written only a few months ago. For many years I had a popular poetry site called Golden Rainbow Poetry and became Golden Rainbow Poetry Creations as it evolved. I had a small business license back then under the same name.

Many of my poems have been lost, some have been found and others are hopefully backed up on a drive I have not located yet. From my earlier years of writing there is a journal type book somewhere that has dozens hand written in. I am hoping it is in the garage in a box.

Soon I will begin to share the ones I do have available. Some have been published in both hard print and audio, in hard bound compilations of 100’s of poets together in 1 book, 4 of my poems live inside those, others on various internet sites. I wrote a poem for 911 that is on audio. The project was published as both hard bound book with an audio CD, mine made it to the audio part.

Each of my poems have a mood, some in imagery that leaves the reader to wonder the meaning and also to connect with the words themselves.

Some of these poems could come from the reader themselves. It could be anyone, anywhere and at anytime.

It is still Nervember (November) National RSD/CRPS Awareness Month. I hope the poem above brings a bit of awareness to those who can’t seem to grasp the meaning of RSD/CRPS. Or… What it feels like.

A special thanks to Barby Ingle, Trudy Thomas, Chris Greulich, and the Power of Pain Foundation.

Thanksgiving is less than 2 days away. I have much thanks to celebrate. Especially for the having the very best husband in the world, my children, grandson and the fire in my flesh and bones I survive however hard.

I am thankful for those friends mentioned above. I am thankful for my mom, sister and extended family. I am thankful for being here to help others, I am thankful for those who help me.

Happy Thanksgiving!

Always be as well as you can be

Wishing each of you pain eased days and nights…

Help Make It Happen! Aunt Barby Hurts – A Children’s Book about Chronic Pain

Posted by twinklev

Please, Help fund this project in NERVEmber! 2012

Aunt Barby Hurts – A Children’s Book about Chronic Pain
A full-color story book that will improve the daily lives of families that deal with the struggles associated with Chronic Pain.

To understand the importance of this book, Watch the Video!

Go to http://www.indiegogo.com/aunt-barby-hurts to make a contribution to this great project.

Please make a contribution no matter how small, every dollar helps us reach the goal. This is a unique and worthy project to help our young population understand how to interact with those who experience some kind of chronic pain. Contributions can be as small as $1.00 and gifts will be given to the higher donations starting at only $10.00. Click on the image and see what its all about.

What we’re hoping to do, with your help, is create a children’s story book that deals with the topic of chronic pain. It will be a fully illustrated story; not merely an instructional handbook. And the goals of the book will be to introduce the idea of chronic pain, comfort children who know someone with chronic pain, and to help them learn ways of playing with, showing affection for and caring for that person.

What?

Why?

I was watching my son and his cousins interacting with their aunt Barby, who suffers with chronic pain. It was difficult for them to understand why they couldn’t give her hugs, or make loud noises. Looking at her, she doesn’t seem hurt; she doesn’t have a cast or even a band-aid. Chronic pain is often invisible, which makes it difficult for children to understand.

They would forget and sometimes play too rough with her. Sometimes that would hurt her and she would cry out; then they would feel guilty, as if they are the one that caused her to be in pain. They even started to think the best thing was to leave her alone and play somewhere out of her way. But Barby wanted to play with them, talk with them and show them how much she loved them.

Seeing this, I wondered how this might be playing out in other homes with family members who suffer from chronic pain. Over 116 million people in America have chronic pain. I thought there must be a good way to teach the children in these families all about it, how to help the family member cope, and how to play and have a great time with them: to have a normal full relationship. In talking with Barby, we agreed that a children’s story book would be the best way of dealing with this type of need.

How?

Tim and Barby will work together to create an engaging story that directly addresses many of the daily challenges of living with Chronic pain and presents them to children in a gentle and natural way. Once the story is complete, Tim will develop the artwork to bring the story to life. Tim is a fully digital artist, who works in Photoshop with a Wacom tablet.

After the story and art are complete, they will be laid out for high-quality printing as well as developed into a digital app for phones and tablets.

November is “NERVEmber!”

We’d like to dedicate this project in honor of NERVEmber 2012, the month for Neuropathy Awareness.

Tim Ingle- Co Author and Illustrator

Barby Ingle- Co Author

www.powerofpain.org

www.facebook.com/powerofpain

www.twitter.com/powerofpain

www.linkedin.com/powerofpain

Fixed Funding campaign

This campaign will only receive funds if at least $13,999 is raised by Fri Nov 30 at 11:59PM PT.

It’s crucial that this project receives it’s funding by the deadline in order to proceed.

Most people don’t realize how far a dollar with go. If all of my friends, Barby Ingle’s friends, the Power of Pain Foundation’s friends, supporter’s of the Power of Pain Foundation, supporters of chronic pain and RSD/CRPS awareness can give a gift of $2 we could reach our goal.

I say “we” and “our’ because this project has the potential of changing lives. Making happier lives. Teaching children how to interact with those of us in pain and helping us care for them while hurting.

If you are a group, an organization, a business, please start a donation jar and donate no later than November 30th.

Please go to http://www.indiegogo.com/aunt-barby-hurts

I gave, will you give with me?