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Eileen's Amazing Story of how " Healing Can Happen."
PARC NEWS 2020
CRPS research 2020: What is going on?
Book Reviews: "CRPS: Patients' Perspective of Living in Chronic Pain" by Eric Phillips and "Explain Pain" by Butler and Moseley
What is PEA?
*THIS ISSUE HAS BEEN PUBLISHED! (Next issue in August.)
Get your copy! Cost is only $25 for 3 issues per year. Each issue is dedicated to current news on CRPS. Our PARC PEARL is a unique, original publication written by PARC and dedicated exclusively to CRPS topics.
So pleaseE-mail Us or donate online to receive your copy. Thank you!
Thank you for supporting PARC with a donation. Proceeds support our CRPS programs. For example we can support more newly diagnosed patients.
PARC receives no government grants.We rely on donations and the generosity of our supporters.
We are a registered charity in Canada and we are able to issue tax receipts for $20 and over.
April 22, 2020. What is a DRG (Dorsal Root Ganglion)Stimulator?
DRG is a smaller, newer version of the old spinal cord stimulator, which emits a mild electrical pulse to change pain signals as they travel up the spinal cord to the brain. Danger signals come from the body. They travel from the periphery (arms or legs) into the "relay station" (DRG) in the spine. From there, signals travel up the spinal cord to the brain.
A DRG stimulator is suitable for lower extremity CRPS, ONLY.The machine targets a specific area e.g. the pelvis, groin, hip, knee, ankle, or foot. A trial version can be implanted in the body for 5-7 days to see how much it reduces pain. It is proven safe and effective.
For more information please see: AboutYourPain.com
(NOTE: video #2 may not be suitable for young children, adults please watch first)
Estabilshed in 2002 by two patients, PARC is a non-profit charity which helps those diagnosed with CRPS.We are not a "support group" per se, we are a charity whose mission is to advise, support,encourage and improve the lives of patients with CRPS. We also promote awareness and sponsor research.
PARC has a Canada wide network of patients who help patients.
February 24, 2020. Explain Pain by Assoc. Prof. David Butler and Prof. G. Lorimer Moseley PhD. Noigroup Publication (2013)133 pages, 90+ illustrations and diagrams. ISBN: 978-0-97342-6-9 To purchase: Explain Pain (Noigroup) and available on Amazon.ca.
This book aims to give people in pain the power to challenge pain and to consider new models for viewing what happens to your body and brain during pain.Why Can pain persist after tissues have had plenty of time to heal? Illustrations help people understand how the brain plays a role in pain.
Butler says," it is no longer acceptable that pain be just managed; we must expect that it can be treated, and sufferers can alter it themselves through education."
CRPS: Patients' Perspective of Living in Chronic Pain: This is a book by our friend Eric Phillips in USA.
Amazon Review: "Complex Regional Pain Syndrome (CRPS) affects millions of people worldwide. The disease causes patients to suffer from constant chronic pain after minor trauma or surgery. The purpose of this book is to share the stories of how CRPS impacts the lives of patients. We hope that these stories will enlighten how CRPS disrupts the patient's life on many levels, from having family issues, social issues, financial distress, and how the medical community treats these patients. It is our hope this book will help educate the public, the medical community, and promote more awareness about CRPS."
PARC's Review: Having read the book, we know the patient stories are quite accurate.They depict the suffering that goes on due to disbelief and enormous ignorance about the intensity of CRPS pain. CRPS pain is rated 42 out of 50 on the McGill Pain Index. These patients are truthful; they try desperately to communicate their pain and suffering in hopes that they get the help they need. Patients have waited years for a diagnosis because a doctor has not heard of it.
February 17, 2020 LIVING WITH CRPS: To find out what it is like to live with CRPS daily, here is a blog by Kristen, a lady with CRPS in Nova Scotia. Despite her pain and disability, she forges on and helps others with CRPS.https://hippierays.wordpress.com/blog/
1. Lorimer Moseley PhD (University of South Australia) is well known for studying CRPS. He and his task force have a CRPS survey which will help researchers see what problems CRPS patients face. This group needs to collect as much data as possible through a Delphi questionnaire.. Can you help?
PATIENTS ARE INCLUDED IF:
you are over 18 years old
you have symptoms for 4 months and over
PATIENTS ARE NOT INCLUDED:
If you are under 18 years old, you may not participate.
If you have CRPS for less than 4 months, you may not take part.
Just follow the link below and complete the survey. It will take about 15 minutes. (Please click on the link below.)
NANOLUME: Invented by a pain doctor, Nanolume is a useful device for keeping track of your pain.
PAIN IS LIFE-CHANGING. HELP IS HERE. The interactive pain-tracking diary by Nanolume® helps you remember exactly what you feel every day. By keeping a record of the textures, intensities and locations of what you feel everyday, you and your doctor can better understand what you are suffering with and how your pain responds to treatment.
PERSONAL FUNDRAISING PAGES FOR MEMBERS OR NON-MEMBERS
PARC has teamed up with Canada Helps (www.canadahelps.org) to offer personal fundraising pages where you tell your story, add some photos or videosand designate PARC as the charity which receives the funds for research in Montreal. Here is an example:
BEAT CRPS! Andy's page. Proceeds to Montreal Research.
If you would like to do your own fundraising page please call us or go to: Canada Helps. TEL: 1 877 755 1595. There is no cost involved. Please let us know.
June 21, THIS STUDY HAS BEEN DISCONTINUED DUE TO POOR INTERIM RESULTS.
A study of Neridronate for reduction of pain and improvement in bone density in patients with CRPS is being undertaken at the Wilderman Medical Clinic in Toronto. Neridronate is a safe medication that has been used for decades in other areas of medicine and only recently has found a role in CRPS.
OR DESIGN Glassworks has utilized breathtaking colors and brilliant textures of stained glass for the luminous glass art that they create. These radiant cards are awesome photos of the art glass that Pam and Oded Ravek have so lovingly created. This set of 8 original cards are blank and suitable for any occasion.
Your contribution is used to help others with CRPS who have lost their way. According to our HELP LINE calls, many do not know where to turn, others are not diagnosed early enough nor do they receive the proper treatment. It is devastating to a pain patient when the doctor does not believe them. Others are in so much pain they cannot function well. You can help us to help them!
DOING YOUR OWN RESEARCH vs OUR NEWSLETTER
The Internet may give you the research on CRPS but it is confusing and hard to interpret. It is a puzzle. How does this paper fit into the current research on CRPS?
When reading a research paper, please ask yourself these questions:
1. Who authored it and what is their reputation?
2. Is the paper's hypothesis valid? Do they prove the hypothesis?
3. Does it measure what it says it measures?
4. Is the conclusion valid? Are there any flaws in the data?
5. In the long run, is this paper important? What does it contribute to the general knowledge of CRPS?
6. Will this drug or treatment be available? Where? When? Neridronate is now in clinical trials but was cancelled June 21. US trials were also unsuccessful.
CRPS is very complicated and hard to research unless the authors completely understand the many elements involved in CRPS.
Who is doing what element of CRPS research? There are many lines of research to pursue i.e. inflammation, blood flow, nerve damage and brain issues. The hot new research lines are the immune system factors and brain issues.
Our newsletter draws the big picture for you and brings together all the elements of CRPS research and important conclusions. We are very well connected with several excellent researchers.
OPTION 1: Deluxe membership ($35 per year) includes PARC PEARL, 3 issues per year, PARC Alert, Ongoing Support, CRPS Self Management Program(CRPS SMP). For the price you receive a lot of services.
Ongoing support is crucial to coping and managing CRPS.We are the only CRPS charity which provides this valuable service (CRPS/SMP).
Your funds are also helping another CRPS patient get the help he/she needs and they benefit from our excellent services as well.
The PARC Forum: "PARC PLACE", is at no extra cost. It is a way of thanking our members and supporters for their onging help.
PARC PLACE is a new online forum available to deluxe members. You must be a member to take part in the forum.
OPTION 2:Newsletter only: ($25 per year). The newsletter is published 3 times per year. (There are no services with this option.)
OPTION 1 and 2 are tax deductible and a tax receipt will be issued.
You will receive a free CRPS awareness bracelet with the purchase of a NEW deluxe membership.
WHAT'S IN YOUR WALLET?
This card is the size of a credit card easily stored in a purse, wallet or pocket.
DO YOU HAVE BURNING PAIN?
HAS IT LASTED LONGER THAN THE EXPECTED HEALING TIME?
WHEN TO SUSPECT CRPS...
Signs and symptoms of CRPS.
PROFESSIONALS: Do you have patients recently diagnosed? Do you need cards for your patients, nurses, hospital or clinic staff?
This sleek 4"x 3 3/8"pocket card has concise CRPS information called the Budapest Criteria which is the way to diagnose CRPS.
PATIENTS:Are you tired of explaining what RSD/CRPS is? Do your family and friends understand? Does your doctor know about it? Does the ER staff, specialist, local hospital, nurse, or physiotherapist know? Probably not.
Now there is no need to explain--let the Pocket Card do it for you. Why not keep one in your wallet? Cost is $1.00 each.
Q: HOW CAN I GET A FREE CARD?
A: Sign up as a new member with PARC. Please send your mailing address and membership fee ($35 CDN ) deluxe membership or $25 CDN (for newsletter only ) to the address below. (US and International rates available on request.)
Q: WHAT IF I ONLY WANT CARDS ?
A: You can click the Add To Cart button below to order cards: Cards are $1.00 each.
Proceeds go to our "Pay It Forward", Conference (Education Programs) for 2020.