WHAT'S NEW IN 2020

 
 
 

WELCOME TO THE PARC

 

Thought for the day:

 "Healing doesn't mean the damage never existed.

It means the damage no longer controls our life."

 

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TO  PARC  MEMBERS,  SUPPORTERS  AND  VISITORS:

WELCOME!

We do our best to keep this page updated.

(last updated April 1, 2020.)

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CRPS AND CORONA VIRUS: NOTICE FROM DR. SHULMAN:

Those of you with CRPS already have a weakened immune system and therefore run a higher risk of getting COVID-19. Here are the other risks:

being over 60 years of age, having one of these illnesses: heart disease, diabetes, lung disease, active cancer, or dialysis.

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NOTICE: As of March 20, 2020, PARC is temporarily closed due to the COVID-19 situation. We do monitor e-mails from our Contact US page or EMail Us! 

We will not be using the postal system but e-mail only till the COVID-19 situation has passed.

Nothing to do? Please read the CRPS books below: "Explain Pain" by Butler, D. and Moseley, L PhD and "CRPS: A Patient's Perspective of Living in Chronic Pain" by Dr. A. ElSayed and Eric Phillips.

May you and your family stay safe and well. Please wash your hands and sstay home.  :-)

Sincerely, PARC staff.

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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."

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January 24, 2020. NEW CRPS BOOK!

 

CRPS bookCRPS: 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 docctor has not heard of it.

Further books on CRPS are planned.

Have you read the book? Amazon link

 

 

 

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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/

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January 6, 2020.

TO ALL PATIENTS WITH CRPS IN CANADA:

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.)

PATIENT CRPS SURVEY

If survey is closed, check back later.

2. If you are a doctor (or other health care professional ) with CRPS patients, please email us for the Professional survey.

Thank you. EMail Us!

 

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PARC HELP LINE**

*We are not open during the COVID-19 pandemic. Please EMail Us! Thank you!

PARC HELP  LINE is open Monday-Thursday 7-10 PM. EVENINGS ONLY:

TEL: 905 934 0261 Eastern Time. We are in Ontario. Please be mindful of the time zones when calling. Check time zones in Canada.

Before you call:  Please know that Vancouver is 3 hours earlier than Eastern Time, Alberta is 2 hours earlier and Halifax is one hour later.

You may also leave a message during the day with your name, number and brief message. We do return calls.

PLEASE NOTE: Please abide by our hours. We are not open weekends or holidays. Thank you.

 

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PARC NEWS


  Apple App Store https://itunes.apple.com/us/app/nanolume-pain-tracker-diary/id919172608?ls=1&mt=8
 
  Google Play Store:   https://play.google.com/store/apps/details?id=com.nanolume.nanolumeapp

 

 

 

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.

This app uses a smartphone or iPad. 

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CANADIAN RESEARCH:

News about Montreal CRPS Research posted May 17, 2018.  Please visit: CANADIAN RESEARCH .

DECEMBER 3, 2019. Health Canada has sent the Montreal Research team the NOL letter (No Obstruction Letter) giving their permission for the research to begin .

More details to come.

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THIRD ANNUAL WALK TO CONQUER CRPS  August 29, 2020.

Kristen Cameron held the second annual Walk to Conquer CRPS on August 31, 2019 in Halifax.Did you miss it?

You can attend the 3rd annual walk by registering early.

AUGUST 29, 2020:  Point Pleasant Park, Halifax If you wish to attend or help Kristen with the 3rd Annual "Walk to Conquer CRPS" please: E-MAIL

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FUNDRAISING FOR MONTREAL RESEARCH 2020

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 videos and 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.

We can post a link to your page here.

We thank you for supporting PARC!

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CANADIAN RESEARCH:

NERIDRONATE (Bisphosphonate): Please read NeridronateThis clinical trial has been discontinued due to poor results. We were notified on June 21.2019.

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FALL/WINTER ISSUE 2019-20 

What happened at our Toronto Conference on October 26, 2019?  We had three excellent speakers talk about a variety of topics: cannabis, rehabilitation of CRPS and what is new in CRPS. It also features:

Sandra Woods,"CRPS isn't One Size Fits All". 

Rachel Caplan's "Living in the Light

We thank both of these wonderful CRPS patients for sharing their thoughts with us.

Get your copy! Cost is only $25 for 3 issues per year. Each issue is dedicated to current news on CRPS. So please EMail Us!

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ORANGE CRPS AWARENESS BRACELETS 

 

Bracelets are available from PARC. The cost is $2 each. Proceeds go PARC PROGRAMS for 2020.

BRACELET OFFER: If you purchase 3 bracelets, you receive one free. EMail Us!

 

PARC's Orange Awareness  Bracelet has website listed.

 

 

 

 

 

 

PARC BONUS OFFER:

We have extended our FREE orange bracelet offerwith the purchase of a new PARC Deluxe Membership to  March 31, 2020. 

TO PURCHASE: 

Order some for your friends and family! Major credit cards will be accepted through Paypal.

GIBLE?A
CRPS Awareness Bracelet Quantity

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Neridronate (Bisphosphonate)

Clinical Trial in Toronto


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.

 

 

(Posted on October 22, 2018.)

 

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PAY IT FORWARD PROGRAM

 

If you have received a package, received a HELP LINE call, or a newsletter,

someone has donated to help you. 

If you want to be part of this program you can help!

 

You are welcome to donate! Tax receipts are issued for donations of $20 and over.

To donate to PARC, please click button below.

 

 

DVD 2013* PARC PEARL 2020 POCKET CARD SUPPORT GROUP NIAGARA

2019 EVENT

WISH LIST

 

 

UPDATES 2020

 

If anyone has a CRPS story in the media, please forward it to PARC for posting. Thank you!

DRG Stimulator Implanted: November 26,2019.

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Canada's Second Opioid Crisis

Opioid Crisis

https://www.ctvnews.ca/health/the-other-opioid-crisis-doctors-weaning-patients-off-much-needed-painkillers-1.3837163

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2018 Stories

Congratulations to Dr. Jeff Ennis, a caring, compassionate doctor

who wrote an excellent opinion article in the Toronto Star:

February 6, 2018.

Toronto Star

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Thank you to all the courageous patients who promoted awareness of CRPS.

You are all awesome!

 

October 19, 2017. Fern (CRPS Survivor) and Bella have been featured on a

 Collar of Duty episode on Animal Planet. Here is the link:

www.animalplanet.ca

Search for Collar of Duty Episode 6.

 

June 17, 2017: 16 year old Lauren Seabrook's struggle:

http://www.cbc.ca/news/canada/north/yellowknife-teen-lauren-seabrook-1.4165439

 

June 1, 2017. Alicia Ellis is telling her story about CRPS through Alberta Health Services..

https://www.youtube.com/playlist?list=PLi1tOF1I5ZoWY3hfrrwu15NTWz8e9amO

 

May 21: Read about CRPS and the devastating effect it has on Rachel Caplan. 

Global News May 21,2017 by Emanuela Campanella

Then read her "LIVING IN THE LIGHT "2020 story in our November 2019 issue! 

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May 17, 2017: The FIGHT Project by Lauren Seabrook, a teen with CRPS:

https://youtu.be/xd6AlLmwK10

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Please watch Krista Spence's encouraging video first played at PARC's Nov. 12/16 event:

https://www.youtube.com/watch?v=-12lCBT-EQY

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April 18, 2017: Rachel Caplan Toronto Star:

Toronto Star April 18, 2017

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Please view Yolande Clement's successful battle with CRPS at: 

CRPS: A Success Story

Yolande is also a PARC coach.

 

PARC's WISH LIST

 

 

  • help us raise $30,000 for research: every dollar counts!
  • volunteers to help with PARC's next event in 2020.
  • volunteers to start support groups (support group kit)
  • gift cards for Staples
  • volunteers to promote awareness on "Colour the World Orange Day"  in November 2020.

EMail Us!

 


 

WHAT IS RESTORATIVE YOGA?  

It calms the mind and body. It is easy poses on the floor and deep breathing.

1. Try Jillian Pransky's Restorative Poses on You Tube. www.youtube.com

2. Rodney Yee's DVD: COMPLETE YOGA for Beginners.  

Out of the 4 practices, the last one is Restorative Yoga which is very effective.

For more please visit: Gaiam

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LDN: LOW DOSE NALTREXONE

Low dose naltrexone has been studied for CRPS and offers hope.

LDN lowers the inflammation levels in CRPS. (Please note that high dose naltrexone is for treating alcoholics.)

Low dose naltrexone lowers inflammation.

Weinstock, L.MD and Chopra P. MD: Identification and Treatment of New

Inflammatory Triggers for CRPS International Anesthesia Research Society 2015.

(Ask us for a copy.)

 

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INTENSE PAIN SOON AFTER WRIST FRACTURE

STRONGLY PREDICTS WHO WILL DEVELOP CRPS

http://www.jhandtherapy.org/article/S0894-1130(16)30196-X/fulltext

Recent research has found that

1 in 26 with a wrist fracture

can develop into CRPS.

The "red flag is pain greater than 5 out of 10".

Also if the patient has pain more than (or equal to) 5/10

for 3 days after surgery, suspect CRPS.

Early diagnosis is crucial.

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DVD: LIVING A LIFE IN PAIN:

THE STORY OF RSD/CRPS

by Sarah Panas

The film features four CRPS patients, a CRPS doctor,

a psychologist and PARC's Executive Director.

You Tube Trailer:

Living a Life in Pain

 

Cost is $10 plus shipping = $13.50 in Canada

Please ask us about US and International rates.

EMail Us!

 

Major credit cards will be accepted through Paypal.

 

CHRONIC PAIN

SUPPORT GROUP OF NIAGARA(CPSN)

 

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For further information:

please contact PARC: E-Mail Us!

 


 

ORIGINAL STAINED GLASS ART CARDS!

WATER (Design 2 of 8)

 

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.

 

MORE STAINED GLASS ART CARDS

 
 

(Design 3 of 8)

 

OPTION 1:

To download an order form, click here:

DVD/CARD FORM

 

OPTION 2:

We are accepting online payment.

It is a secure site.

Major credit cards are accepted.


 

 

PARC PEARL: November 2019

Topics indude:

Living in the Light

CRPS: One size does not Fit All

New research on PDRN.

What is Kineret?

Summary of Toronto Conference October 26, 2019.

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Copies of our previous issues are still available! EMail Us!

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Why subscribe to our newsletter?

"PAYING IT FORWARD" Program

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.

Besides, your support is very much appreciated!

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MEMBERSHIP

OPTION 1: Deluxe membership ($35 per year) includes PARC PEARL, 3 issues per year, PARC Alert, Ongoing Support, CRPS Self Management Program(CRPS SMP)  and Forum. 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.

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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. 

PARC's Orange Awareness  Bracelet has website listed.

 

 

 

 

 

 

 

 


WHAT'S IN YOUR WALLET?

 

PARC pocket card
 

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...

INSIDE TEXT:

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.

 

 

 

 

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