Profiles in Courage
 
INTRODUCTION

Every day, those with RSD/CRPS soldier on and live their lives despite chronic pain. This page is a tribute to those who are doing something special with their lives such as helping others or spreading the word on this disease. Some have a loved one with RSD/CRPS. Some lost their loved one. We commend them all for their fortitude, perseverance and courage. We salute them for carrying on despite the numerous obstacles they face every day, while living with this disabling disorder.

Recently, the Olympic Torch was the vehicle for bringing about awareness of CRPS in Canada. Thanks to those brave patients who carried the torch in 2010! Read Paula Orecklin's story.

They are a tribute to the breadth and strength of the human spirit. May they uplift us all!


 

Profiles:

 


 


SAVING SARAH

When I was young, everything was at my fingertips. I was a sister, a daughter, a friend. An accomplished athlete, I was seconds away from qualifying for the Canadian National Track and Field Team. I was at the top of class; I was an accomplished pianist for 12 years.
Then, RSD came into my life.
After surgeries on my feet for athletic injuries, I awoke to a wheelchair, two casts on my legs, and pain that was only getting worse.
The casts came off, no relief.
I couldn't walk; my legs were purple and cold as ice. My arms were beginning to change as well. The right side of my face was numb. Then, it started with my eyebrows, the hair fell out. My eyelashes were next, followed by all the hair on my head. It will never grow back.
I was 15.
I'm terrified, I thought. I'm alone. I'm alone and no one can understand what this feels like; my body is disintegrating from the inside out and no one can see that anything is wrong.
But I was wrong.
I was not alone; there were others like me, and doctors who understood that it wasn't a matter of me seeking attention, the need to have more friends, or something that could be cured with psychological counselling. It is something everyone must be diligent with and accept in your own time, because there is life after RSD, a beautiful life with a future. My name is Sarah, and here is how I broke through that dark place to become happy and live a successful, productive, and optimistic life.
1) You are never alone.
For those with the disease, one cannot help but feel a sense of alienation from family, friends, peers. While it is impossible for them to understand your burden, they are there to help you. Confide in them; it will make you stronger. When you feel you're alone, reach out to someone who knows - PARC, a clinic, your community, anyone. In the world at this very moment, there are thousands who feel exactly what you do, who can understand and help you with tips and tricks to get you through the dark times. For me, this was my family, and this was my doctors. I was fortunate enough to be sent to Dr. Hooshmand's Neurological Clinic in Vero Beach, Florida, and the Seattle Children's Hospital RSD Unit. With their help, I got my confidence back. I became strong and able to fight back.
2) RSD does not define you.
You can have a fulfilling life with RSD. You must remember that it is something challenging you; it does not control you or your mind. Keep your mind clear of the negative, stay focused on the tasks you must do to break through that wall of pain, and be diligent. You have the power to control it. Pace yourself, take it minute by minute, task by task, one day at a time. You have the power to do anything you want; never say the words, "I can't". There is always another way to get the job done. RSD changes your life, it does not take your life. The power to live it successfully and peacefully starts with you.
3) You are a new person.
With this disease comes new routines, new challenges. Your life has undoubtedly changed. With RSD, you truly become a new person. Let this person be positive, and accepting of limitations as well as strengths. You have life, choose to live it with wholehearted enthusiasm. When I was able to get out of my wheelchair after two years, I walked slowly, assisted with canes. My therapist took my cane and nailed it to her office wall. Without it, I was forced to stand up straight. Sure, I fell down. Of course it hurt, it was indescribable. But the only thing in my mind was a visual of me walking, unassisted, down that hallway. It likely took me an hour, maybe all afternoon, but I did it. I was 18. Once you change your outlook from a negative place of limitation to that of possibilities, your body becomes a tool to get you there. You will only have success. What I've learned is to never compare yourself to the way you were before RSD. It changes you. I accept I will never compete again, but that will not stop me from living my new life to the fullest, enjoying a walk outside, or appreciating what I have.

I am now 24 years old. I have finished a Bachelor's degree, and am working full time. I am able to live on my own again, unassisted. Sure, I have bad days. We all do. But the most important thing I've learned is to not worry about the little things, and not worry about what could happen in the future. One step at a time, that's all I need.

While the clinics I attended helped me back on my feet, (literally), I still have RSD and it is still part of my daily routine. Don't get down on yourself because it won't go away. Enjoy what you can do, enjoy your family, your community. Sit outside and look at the beauty surrounding you. Your life is a beautiful gift, make the most of it. Focus on your abilities instead of weaknesses and you will find the key to living life with RSD: this thing does not own you, it does not control you, it does not define you. Only you have the power to choose what your life will be.

by Sarah Ruggins Dec. 2011 reprinted from PARC PEARL WINTER 2011-2012

©Sarah Ruggins 2011

TERRIFIC TEEN

Ayala is a wonderful, resilient young lady living near Ottawa. During the first minute of a floor hockey game at school when she was 10 years old, she was hit with a slapshot of the puck to her knee, which was the trigger to her RSD. Ayala and her family has had a roller coaster ride, like many other children and adults, with finally getting the proper diagnosis, searching for the best available treatment, and in receiving understanding from her peers and relatives.

Aya is rising above her pain, and has dedicated herself to creating a web site with a positive outlook that leaves visitors to her site with a sense of hope and inspiration. Her site, has brought attention to and created a greater awareness of RSD through interviews in major Canadian and local newspapers and CBC Radio.

Ayala plans to update her site and is the midst of compiling and writing a book of poetry and songs (as well as a novel in the works!) and intends on using its proceeds toward RSD research.

UPDATE April 2002: Ayala Ravek will be receiving the Ontario Junior Citizen of the Year Award in April from the Lt. Governor of Ontario .Congratulations Aya!!! We are very proud of you!

UPDATE June 2004: Canadian Living Magazine features "HEARTBEATS" with a photo and article about Ayala and her fight against CRPS.

Toronto Star June 3, 2004 Section G: features Ayala and her story on CRPS. You may be able to find it online at www.thestar.com and search by subject.

As Aya likes to quote, "Positive thinkers feel the intangible, see the invisible, and achieve the impossible."

At the TEEN CORNER, feel free to e-mail her with any questions or ideas. To visit her site, please visit our links page.

OUR POET PHYLLIS

Phyllis has RSD and lives in Oceanside, CA. She is married to an engineer, has 2 sons, 2 grandsons and 1 granddaughter. Her greatest love is interior decorating and she also enjoys floral arranging ie. weddings, parties etc. Since being diagnosed with RSD, her new profession is 'therapy' mental and physical.

" I write now because it helps me to understand myself and it gives me a 'release' of sorts. I can write what I feel, no one has to listen to me complain and you only read my work if you want to. I have recently heard from a few people who have read my work; their comments were the same, "'You wrote just what I am feeling.'" I started keeping a diary at the request of my psychologist, who encouraged me to continue. I began putting short poems into my diaries to him. Before I knew it, I had written 30 poems. Writing seems to give me a purpose."

UPDATE: Two of Phyllis' poems will be published this year. Congratulations, Phyllis!

A CONVERSATION WITH PAIN
by Phyllis Van Wormer

Pain, why do you pierce and poke at my poor body.
You have plagued me for years, I ask you now, go please.
I searched for a palace, tall and proud -- I needed a pristine dwelling
in which to store my power.
Palace, pristine, proud, you must be mistaken? Those words would never
describe me.

Pain, leave me now, for I tire of thee.

Remember, years ago, the very first time you acknowledged my existence.
You were tall and proud, your body a palace of pale pink.
Your soul was pristine.
You were the prize I sought, the palace I conquered.
After all, you were promised to me.
Yes Pain, I remember, with your cruelty you plundered my body and
pillaged my bones.

Life seeped through my pores as my blood flowed like a river, pooling
around body. As I gasped for air, the warm red fluid filled my lungs.

Oh, I struck you hard, I did. I took over your body as you began to
breathe your last breath. It pleasured me so, to conquer one so pure.
I was praised highly for that fete.
I stood over you proudly, each time you grimaced, or when a tear rolled down your cheek.
Your pallor was no longer pink, but shallow, like plaster before being kissed by the sun.
But I fought back, Pain! For prolonged moments you were gone.
I remember floating in a garden of blue; rays of light poured from beyond.

It was then I heard a far away voice, it called out to me.
A pitcher of pure gold appeared; it contained a scant bit of powerful brew. It was all I needed to escape thee, Pain.

Piece by piece, I rebuilt my body and my life.
It was plain to see, I became more powerful than thee.
Yes, you took control-- but remember I returned the next year.
You paid a handsome price for besting me. I pounded and pelted you with sorrow and hurt.
Your prior victory crushed, I proudly preened while my peers bestowed me with their cheers.

I remember how you pierced my heart and punctured my soul.
My sweet child was sacrificed to give you pleasure.
You plucked her from my womb --alas, that was the price I paid for besting you.
Yes-- I saw you weeping-- you cried from the punishment I bestowed upon you. Your heart pined for the pretty babe.

But once again I rose up, I found more power; I fought you off. As long as I could keep you from your pleasure -- I found peace. I've proclaimed you my palace. There is no part of you strong enough to fight me now.
My pleasure is your plight; I will see you undone.

Please pain, I've suffered enough. You are constant now, never ending
in your pursuit to punish me. Your power has plainly out done me. I've
protection from your wrath.

And oh, the pleasure! You are my prize. So proud am I now that your
future is mine.
Pierce through my body if you must, pound on me with all your might.
I promise you now --you will not take my life --you cannot have my soul.

Struggle if you must --but like a pest, I shall remain.

Is there no compromise, Pain? I need purpose in my life. You have
pillaged me so; must you now devour all that I am? Have you no passion,
why must I plead for a moment of peace?
I offer you a challenge --- ignore me if you can. You claim to have
power--use it, push me away.

I accept your challenge, Pain. My life will be rebuilt --I will ignore
you. Each breath I take will inhale power --and exhale Pain.

 

UNSUNG HERO

For many years, Eric has been a well known crusader for RSD/CRPS. Based in Massachusetts, Eric has sent out information, contacted, and arranged for medical assistance for countless people around the globe. At the International RSD Foundation, he quietly works behind the scenes to help those with RSD get the help they need.

His tireless efforts have resulted in three excellent RSD conferences in 1995, 1997 and 2000. He coordinated the Winter Medical Conference (Nov.30-Dec.2,2000) in Orlando, Florida. A year and a half in preparation, the conference was well attended by 160 patients and 68 professionals. It was well organized, informative and of great benefit to both doctors and patients. Eric is also assistant to Dr Hooshmand, a well known neurologist who treats RSD/CRPS patients. Dr Hooshmand has since retired but Eric continues to help patients.

We wish to acknowledge Eric's many years of hard work to promote awareness, educate the medical community, assist patients and promote research even though he has longstanding RSD. Eric is proof that having RSD means one can still accomplish great things. He continues to be an inspiration to us all.

UPDATE: 2010

Eric is walking again after a long road of rehabilitation. Your dream came true, Eric!

Please visit the International RSD Foundation at our links page.

MY DAD: TONY

This wonderful letter was written by Tony's son and received by PARC in May 2001:

I would like to nominate my Dad. Since I was 6 years old I been living with my dad. He has rsd in his arm and now in his leg .He has had it for over ten years now. My dad is the best dad. He is the coach of my soccer team. He also is a member of the parents association at my boys and girls club in London. My dad is the person that started single fathers rights groups in London and has helped lots of dads get custody of their children. My dad is always in pain and can't do lots of things he wants to but he does not let me know how bad it hurts and he is always here for me when I need him. My dad has information on his web site to help other people with rsd and single fathers learn all they can. My dad is the best dad in the world. He helps all people that need his help and never asks for anything back. He just wants to help people learn.

Jacob McPhee I am 10

Editor's Note: Tony has been the mastermind behind the PARC Awareness Campaign to educate Canadian doctors about RSD. We thank him for contributing countless hours to the CD project which is currently in Phase 1. Way to go Tony!

LISA SHORE

A memorial site for 10-year-old Lisa Shore, whose death at the Hospital for Sick Children in Toronto, Canada on October 22, 1998, was found to be a homicide by a coroner's inquest jury. Lisa died hours after going to hospital in severe pain from a flare-up of RSD. The web site is an effort by Lisa's family to seek justice for Lisa's wrongful death.

UPDATE Nov. 2004: Read about the struggle by the Shore family to find out the truth about Lisa's death in a new book written by Sharon Shore, mother of Lisa. An excerpt from the book: NO MORAL CONSCIENCE.

LIFE BEFORE AND AFTER SPINAL CORD STIMULATOR

by Bryant Frazer

I had my Dorsal Column Stimulator (DCS) implant surgery and this is how my journey started…...

My name is Bryant, I’m 43 and, I was rudely introduced to the world of Reflex Sympathetic Dystrophy (RSD) back in January of 2000. My RSD was a result of Thoracic Outlet Syndrome surgery (TOS). I had the top rib removed on my right side, to repair the effects of TOS, and that is the day my life changed. I awoke from the surgery in severe pain thinking that it was the result of the surgery. I spent 3 days in intensive care and then was released from the hospital, to recuperate at home.
I live in Northern Saskatchewan, just over 500 kilometers (one way) from Saskatoon where the surgery was performed. So one can imagine my trip home after a few days stay in Saskatoon was quite the ordeal.
So after three months of sleeping on the couch, (I couldn’t sleep flat at all,), a complication from the surgery, I returned to see the surgeon. The surgeon took one look at my hand and then after a “little” complaining on my part about still having severe pain, and seeing the swelling of my hand, figured it might be RSD and sent me to another doctor who had knowledge of RSD. This surgeon set me up with an appointment in the pain clinic that day.
That is when I had my first of 6 sympathetic nerve blocks using Guanethidine, one per week, for 6 weeks. The first few had some effect and relief, but only lasted for a day or so, and didn’t totally relieve the pain. But any relief at all is welcome, even if one has to travel for the treatment.

During this time I started physiotherapy. No one had heard of RSD in town where I live. The therapist called the pain clinic and finally came up with a program that might work for me. In between the trips to Saskatoon for treatments, there was the daily physiotherapy routine.
I was off work for about 8 months doing physiotherapy, I decided to go back to work in the modified work department at my company. At least I could make an income for all the trips I had to take. On the final trip to Saskatoon the stellate ganglion block worked for a while, but in the end I was back to where I was before with the pain.

By this time, the effects of RSD were starting to show in my right hand. Clawing of the hand had started and the muscle and tendons were shrinking. To this day my hand is still clawed and I have lost all fine manipulation and strength in this hand, but I haven’t lost all use.
During this time the doctors were also trying different pain medications to find me some relief. The drugs either didn't work or I had drug reactions. This was also the time (2002) that I had another change in my family doctor, the second one since this began. Living in the north this happens quite often since most of our doctors are from out of country and are only here on contract.

During that time, I just gave up, and went on with the way I was. So here I was still with no pain medication and no real treatment plan. There is no one to blame for this, it is the way I felt at the time. By the fall of 2002, I realized that I had to get back to seeking treatment, and saw my doctor who set up appointments for treatments again.

In the spring of 2003, the specialist suggested that I had an ulnar nerve entrapment and should consider surgery. I was hesitant about returning to the operating table, ( and so was he), so he wanted to try a few stellate ganglion blocks first to reduce pain. At first, there was some relief and the block worked for about a week.
After a few more trips back to have more blocks, the decision was made to have the surgery. Now of course this just didn’t happen over a couple of months, and during this time I was also working so my treatments were scheduled around work. I was on the waiting list for the surgery, in October 2004.
Before surgery, I had a block and the ulnar nerve release, (wrist., elbow) was a success. In my hand, some of the pain was gone, I had more movement and also a little less clawing of the hand.
Afterwards, over time, I had about 8 blocks but they stopped working. Then the pain clinic doctor suggested that I see a neurosurgeon about a Dorsal Column Stimulator (DCS). I was put on the wait list for surgery which would take until spring of 2005.

NOTE: Bryant tells how the DCS changed his life in part 2 next issue.
©PARC PEARL June 2006 issue.
=========================================================

Part Two: LIFE AFTER SCS(DCS)

INTRODUCTION
Before the DCS surgery, I had issues to deal with: depression, medications and anger. During the past 3 years, I was battling depression. It took time to realize that I was depressed and to really accept it. There were also problems finding a medication that would work. I tried 3 medications and finally found one which helped..
Just as important were the issues of anger. Before all of this happened I was the happy go lucky type, but somewhere along the way I turned into the angry "go fly off the handle type."
The meds did settle me down but I needed a higher dosage. I was also going through counseling with a psychiatrist. Having someone to talk to who was non-judgmental was very helpful. (Not that my family or friends weren’t sympathetic, but after a while it was hard on them too). I also had a reaction to meds. I was having a bad day, and somehow lost control of myself.
This all took place about a week before my implant surgery. It was my lowest point throughout this whole experience. I guess that is what happens when one feels like there is no way out, even though there is relief just around the corner. It shows you my state of mind at the time.
During the second year of the RSD, while surfing the net, I found RSD Canada (PARC) and the web site. I am grateful for all your help and support.

SURGERY AT LAST
My surgery for the DCS was performed in May of 2006. The surgery was done in two parts. The first part, the trial, and then the unit is then implanted into your body. The surgery is done while you are awake; a local anesthetic is used to freeze the area around the surgery site. This is done so that when all the leads are in, the unit can be turned on and then adjusted. A wire protruded from your back for the trial period; it connects to the trial DCS unit. The trial DCS is disconnected at bedtime and re-connected in the morning. This trial period lasts 1 week and then the actual DCS is implanted. The operation for the trial lasted about 2 hours. I was released from the hospital the same day.
Once the wires were in place, the unit was turned on. I felt instant relief immediately. There were a few minor adjustments, but it worked successfully. There is no feeling like the one you get after battling pain for 6 years then as fast as a button being pushed, the pain is gone. The DCS worked so well that I only had it on for 5 to 6 hours one day, and the relief lasted well into the next day.

DCS IMPLANT
The actual DCS was implanted exactly one week later. This operation, under local anesthetic, lasted about one hour.
The unit is then turned on, and checks are done again to ensure it is working. There is an 8-week period after this surgery where no twisting, bending, or movements can be done or leads will move. I can feel the unit under my skin, and it took a little time to adjust to it being there. To turn the machine on and off there is a remote. The remote is held over the unit (touching the skin), and can be either turned on or off, or the intensity can be raised or lowered. No other adjustments can be done.

POST SURGERY
After the surgery, I was a different person. Gone was the grumpy highly aggravated person, out went the pain meds and I slowly weaned off the anti-depressants. I still have to be aware of the leads inside and the unit. I use the unit now almost everyday as I’m becoming more active. There still are days when pain can be an issue, but the pain is much less than it used to be.
There are places to be aware of now. Any store with a theft detector, all airport security, or any place with a large magnetic field around it. These types of devices can cause problems. All of this information is in the book that you are given before surgery and in the DCS manual.
Since the surgery, I have had my post op check up, and so far all is going well. I will return again in September. As far as recommending this for someone else, all I can say is that it worked for me. My problem now is in taking it easy, I feel so good that I believe I can do things that I could do before, however, when reality sets in the RSD lets me know that I overdid it. At least there is relief now.

IN APPRECIATION
I would like to thank all who were involved with my DCS surgery; I couldn’t have asked for better treatment. I would like to thank Dr. Cowie at the St. Paul’s Pain Clinic in Saskatoon for his great medical care and setting the surgery in motion.
It is so important to have someone to talk with. Without family and friends, I wouldn’t have done as well as I did. Along the way friends will be lost, (some people just can’t understand what happens to a person with RSD, and they are not to be blamed for their ignorance), friends will be made, maybe old ones found, and life will go on. Even family will have trouble understanding, but being family they will eventually understand in their own way and, in their own time.
My final thank you is for my wife Donna. Without her support I know I would have not made it through this whole journey. She has been there since the beginning, has been my shoulder to cry on, my sense of reason, and my strength throughout. It takes a special kind of person to be there for you.
THANK YOU !!
Bryant Frazer

Editor’s Note: PARC thanks Bryant for sharing his DCS story with us. We hope that people will benefit from his experience. ©2006 PARC.


THE CAREGIVER'S ROLE

by Daphne Demarell

HOW DO YOU DEAL WITH THE FRUSTRATION AND HELPLESSNESS (OR OTHER EMOTIONS) THAT MANY CAREGIVERS FEEL?:

WOW! THAT IS A LOADED QUESTION!!!!!!!!!



How many times have we both felt helpless and frustrated..............I sometime think it was a case of trial and error, what will work for some will not work for others.

When you both get depressed because there doesn't seem to be an answer, I think one of the things that I really concentrated on was not getting depressed about it (especially at the same time).......this was not going to beat us.....we were going to get answers to our problems and understanding RSD/CRPS was the key.

One of the most frustrating things for us was the fact that Herman was not diagnosed with RSD/CRPS until 2 years after his accident, we found out that many things like cortisone injections, etc were not the treatment that he should have had

We had our shouting matches, when Herman became depressed (as is normal) because of the pain, frustration with doctors, medications and probably even ME I became a good listener, you do not always have the answers, but, just being there and listening was the key to knowing exactly how he felt.

As time progressed and we understood why he was having more and more symptoms that were natural with RSD..................I went to his doctors' appointments with him and the RSD articles in hand, sometimes it went over well, at other times I think some doctors would have liked to have thrown me out, but, at least his regular Dr. became sympathetic and understanding about it and did admit that we knew more than he did, this was reassuring as it was only him that could make sure that Herman did get the treatments and medications that he needed.

There is no perfect answer, but, this is how I handled it and it has worked for us!

©PARC PEARL 2006

Sadly, Daphne Demarell passed away in 2008. She left us with a marvellous story and her love for Herman.

 


 

MY RSD STORY

by Herman Demarell

In 1991 I had the index finger of my left hand crushed at work on the Diamond Drills.

I was seen at a hospital in Quebec, where a bone specialist was contacted to look at the X-rays. He said there was no immediate problem, so I went home and was to see my own doctor in about 10 days. When my finger was x-rayed he noticed that the bone of my middle finger was split, so I was referred to a bone specialist, where I was told that he would have to remove the tip of the finger so that the rest of it would heal. It was removed just below the finger nail.

This operation was done in April of 1991 and immediately after it I was experiencing excruciating pain. He could not understand why I was having so much pain and administered Demerol and gave me Tylenol 3 to help ease it.

This pain continued and I noticed that my shoulder was getting stiff. Within a month my shoulder was frozen and he injected cortisone, which did not help this condition. I was referred to physiotherapy and had a TENS machine, which I used every day at home.

I found the nights the worse, I would be up most of the night walking the floor and could only sleep for a period of a couple of hours at a time.

After each physio treatment I was in agony for days and the pain was unbearable. By this time I was also seeing my compensation doctor and he stated that I should have had a nerve block, but, that it was too late now and that I should
discontinue physio as it was not helping me to regain any use of my hand and for me to continue trying to use it and doing exercises as my hand was now frozen into a claw. I had little use of my hand and the pain radiated from the middle finger up my arm and to my shoulder. I was told that I had what was known as shoulder, arm, hand syndrome.

Over the period of the next few years I was sent to a pain clinic and other specialists, which all stated that it was too late for a nerve block, but “hopefully the pain would go away.” They now confirmed that I had RSD/CRPS which was irreversible.

My skin got very sensitive to the touch and I found that loud noises could trigger my pain. I started wearing a glove on my left hand at this time, as it seemed the movement of air would also start my arm paining and this seemed to keep the air off of it. I still wear this glove.

I was still on Tylenol 3, but, was also prescribed other drugs which had no effect on the pain. I was a firm believer in trying to keep busy to keep my mind off of the pain, but, it was getting harder all the time.

In April of 1999 I started experiencing a jabbing pain in my left rib and the pain would radiate around the waist and down my left leg which made it difficult to walk any distance.

I also found that the pain would spread across my shoulders and into my right arm, also causing headaches.

Cold sensations started in late July and I was in constant pain, I found I had to wear a polar fleece jacket and wrap myself in blankets to try to get warm.

I broke my rib in September of that year and was prescribed Oxycocet, it seemed to help the pain some, but, I found that I was having to take more and more all the time to relieve the pain. It was then that I realized that I was addicted to them. I had to go through a dependency withdrawal and it was not pleasant. I went back on Tylenol 3, but, the pain was much worse now.

I was taking a drive one day to commit suicide, I did not know where I was going, but, I couldn’t live like this anymore in such pain. As it happened, my wife saw me driving from where she worked and stopped me and told me that she had called our family doctor to ask him if he would prescribe some Percocet for me, which I am still on and seem to be able to keep taking about 5 to 6 a day to control the worst of the pain. I guess I was not meant to die at that time!

I went to London to a nerve specialist that stated he didn’t know if operating on my finger to fix the neuroroma would relieve my pain or make it worse, which if that happened I would have to go on stronger medication.

I have been very lucky because I have a wife that stands by me and listens to me WHINE!

We moved to British Columbia in August of 2001 and I have been seeing a doctor here that has treated RSD/CRPS and has been monitoring my situation. He prescribed Gabapentin. It did not work for me, but, it has been tried very successfully on some other RSD/CRPS patients.

SOME HELPFUL HINTS THAT WORK FOR ME:
* When I have spasms in my hand and arm the pain is unbearable and I find that if my wife applies wet, hot towels with Epsom Salts, I can get relief from it. I cannot even think to get them myself because the pain is so intense.

* I have a “Blanket with a Brain” and cannot sleep at night without it, as I get so cold.

* I wear micro tech fleece underwear that is so soft and warm it also helps me to get through the night.


 

My Story: Yolande Clement Feb. 2016

Yolande, a resident of northern Ontario in Canada has made a video about her journey with CRPS. It is a success story that we are proud to share with you

It underlines the importance of catching and treating CRPS early in the course of the disease.

Her story is in 8 parts similar to a book. Good work Yolande and Leo!

You Tube

 

 


OLYMPIC TORCH BEARER: PAULA ORECKLIN

Paula signs the Olympic flag

Paula is signing the Olympic flag before her 300m run.*

PAULA'S STORY

 

On January 9, at 8:37 AM, in Virden, Manitoba, against a ferocious prairie windchill, Paula Orecklin carried the Olympic Torch for 300 meters, as it crosses Canada to the Winter Olympics.
Paula carried the torch on behalf of the 2 million Canadians who, as she does, live with RSD/CRPS.
Her goal was to carry the torch without the aid of a wheelchair or canes.
Paula accomplished her goal.
The following bio was read out at the community celebration after the torch passed through Virden. As the Olympic committee person read this, the audience, a few hundred people who were packed into the Legion Hall (there was standing room only) interrupted the speaker to give Paula two rounds of applause:
"In 2001, an injured ankle led to Reflex Sympathetic Dystrophy, also known as Complex Regional Pain Syndrome, an incurable chronic pain disease. This is a life-changing debilitating medical condition.
Paula hurt her right ankle when she was 13, and in a Grade 8 running event. When the injury healed, the pain continued to escalate. It took 18 months of doctors' misdiagnosing and mistreating her ankle before a physiotherapist at the Children's Hospital asked us if anyone had mentioned "RSD" to us. If RSD is recognized within 2 or 3 months of the initial injury, apparently it can be successfully treated. As it was, like so many others, it was too late for Paula, and now she must live with a chronic pain condition. It turns out, we discovered, that chronic pain conditions are not well-taught in medical schools -- veterinarians spend more classroom hours than medical students do in learning about chronic pain.
This problem is one of many chronic pain diseases that are not very well known, but are widespread. RSD ranks at 42 on the 0-to-50 pain scale developed by the McGill University Medical School. Cancer, by comparison, ranks at 28. Cancer, however, is widely known and research to find cures is funded in the millions of dollars. It is estimated that about 2 million** people in Canada and about 6 million in the USA suffer from RSD, and yet very few people are familiar with this condition. As more children are injured in sports, this is also becoming a pediatric problem.

Canada has P.A.R.C. - Promoting Awareness of RSD/CRPS in Canada. In 2008, PARC sponsored Dr. Shulman's (a Toronto area pain specialist) RIDE TO CONQUER CRPS, a cycling marathon from Toronto to St. John's to promote public awareness of RSD.

Paula running with the Olympic Torch.*

 

**PARC NOTE: There are no epidemiological studies which can tell us how many people in Canada are afflicted with CRPS. It is estimated that 1 in 60 carry a lifetime risk of developing CRPS.(Source: Northside General Hospital Pain Clinic, N Sydney, NS)

*Congratulations to Paula Orecklin for bringing awareness to Canada. You are the power of one, Paula!

CARRIE-ANN RAWLINS

Carrie-Ann also carried the Olympic Torch in Ontario and brought awareness about CRPS.

 

 


 

NOMINATIONS: WE KNOW YOU ARE OUT THERE.....

If you know of anyone who is very special person with RSD/CRPS, (or a loved one), and deserves to be recognized for their talent or work he/she does, please tell us about this unique person and why he/she deserves recognition.

©2002-2016 PARC

 

 

 
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