Anniversaries

Anniversaries of the incident that caused our CRPS are difficult.  For me, this one is particularly difficult.  Twenty years ago today, on my way home from opening a home care case when I was hit head on by a 19 year old on her way to a date.  It is the 20 years that is tough.  From the beginning of 2016, it has been haunting me.  This is not like me.  It has been a really tough three months.

Today, I refuse to sit at home and cry.  I refuse to sit home and feel sorry for myself.  I plan to go out and do some shopping for my grandson and grand baby due this summer.  Tonight, my husband, mom and I are going out to dinner.  My accident was days before my husband's 40th birthday.  The accident ruined my husband's 40th birth but it will not ruin his 60th birthday.  My husband will be away on his birthday so we are going to go out and celebrate.

An Interview by Nancy Renée Cotterman of CRPS Partners In Pain, Inc and Charles Mattocks of Trial By Fire

Nancy Renée Cotterman, of CRPS Partners In Pain, Inc., recently spoke with Charles Mattocks, director of Trial By Fire, a film based on complex regional pain syndrome (CRPS). Charles is known as a celebrity chef, an Emmy-award nominated actor and film and television producer about what inspired him, his history with the disease and what people can do to help patients and advocates of CRPS. Nancy and CRPS Partners In Pain, Inc. were instrumental in making introductions that got this project started. We at CRPS Partners In Pain, Inc. are so proud to have played a part in this ground breaking film about CRPS (Complex Regional Pain Syndrome)

Nancy to Charles:

Charles, it was a year ago that you first contacted me and started the journey that is now Trial By Fire. What is the most important thing that you have learned in making this film?

Charles:

I've learned that I'm thankful each day that I don't have to experience the type of pain I have seen, to be honest, I'm not sure I could handle it. While I think that I am strong, this takes the strength that at times is super human. I give a lot of credit to the people of CRPS, many deal with pain, some work jobs and take care of their families. I've also learned how amazingly talented in wanting to give, that many are in the community. There are people that help each day that I am thankful to have in my life. They do the work of a thousand, for people who never know that they are fighting for them.

Nancy to Charles:

What surprised you the most while creating this film?

Charles:

The fact that we couldn't and didn't get support from the medical and pharmaceutical companies. There's a division in the community that seems to hold back organizations from working together, and some of the people putting negative energies toward one another. I've heard too many stories of people leaving groups, being hurt, and depressed by negative comments or slander. I understand people have different views, but maybe I thought, those could be put aside for the bigger picture. I feel that the world is looking at CRPS and I'm praying that those with issues can focus on the bigger picture, because there are too many hurting that need help desperately. That is what is really key, not who doesn't like me or some other people, but the people.

Nancy: We should all work together. We fight this monster day in and day out. We shouldn't be fighting each other as well. It is what distresses me the most as a member of the CRPS community trying to make a difference

Nancy to Charles:

What do you hope will be accomplished by Trial By Fire?

Charles:

When I first started talking talking to people in CRPS, I heard they needed a voice, I heard they needed a face. I don't claim to be that, but I hope what I brought helps spark a fire, helps create conversation, helps bring awareness. Some who have seen the film, tell me Charles, "my husband, my wife, my mother didn't understand how serious this was and after seeing the film they did." As much as this is for the people of CRPS, it's even more so for the doctors, the friends, the family members, the undiagnosed, who need to know about this disease.

Nancy to Charles:

How has this journey impacted you? Your mom?

Charles:

Mom is on a journey that she sees little hope ,right now it is just about quality of life. It's about living the best she can with the least amount of pain. I think she has given upon a cure and even treatment, but is trying to do the best she can each day. For me, I have met friends and what I call family members, for what I hope will remain with me forever. I have seen the best and the strongest through pain.

Nancy to Charles:

5. Since creating this film what do you think needs to be done to help those with CRPS? Especially regarding medical treatments?

Charles:

I am a man at times, of many words, but this is one that leaves me clueless. Many companies are motivated by money. If there is no money in a treatment or cure they won't pour hundreds of millions into it, because that is what it takes for a cure. I hope that there is something that is already out there to help on the market. I hope that a miracle happens, but I think this film might help at least open a door to a conversation getting started. At times, we force them to care.

Nancy to Charles:

6 .What moment during filming stands out the most?

Charles:

Losing Hannah at 19, two days after wrapping the film. I remember walking the street in shock as I had just seen her two weeks before. I think that is what stands out the most. There were amazing memories, but that one is what stays in my mind.

Nancy: It is horrible when we loose someone as young and sweet as Hannah. It never gets any easier. She was a ray of sunshine even though she lived in horrific pain trapped in a body that did not allow her to do the things someone her age should be able to experience.

Trial By Fire

Marie McGowin of CRPS Partners In Pain, Inc. recently spoke with Charles Mattocks, director of Trial By Fire, a film based on complex regional pain syndrome (CRPS). Charles is known as a celebrity chef, an Emmy-award nominated actor and film and television producer about what inspired him, his history with the disease and what people can do to help patients and advocates of CRPS.

What inspired you to make Trial by Fire?

What inspired me was the fact that my mother was diagnosed 8 years ago with CRPS and my father had just died a couple months earlier from cancer literally out of nowhere. So I remember going to her house and she was having a very bad day and talking about wishing she wasn’t here type thing. That really moved me because it was like, I just lost my father and didn’t want to lose a mother less than a year later.

So I realized because I had done so much work in diabetes as far as being an advocate for that and I had a background in that, so I figured, you know what, I was also directing a film on diabetes that I’ve been directing around the world. So I figured I would kind of step up for the people of CRPS because from what I saw didn’t really have a face or a voice and I figured I could combine the 2 of being not only an advocate for CRPS but also doing something to kind of tell my mother’s story while I try to figure out how I can help her.

In your own words, what is CRPS?

It’s Complex Regional Pain Syndrome and obviously it’s a rare disease that comes from some form of contusion or some trip or fall or people get it from even blood draws. It’s a painful disease that’s rated higher up on the pain scale, higher than amputation and childbirth. So the people living with this are living with a severe pain that’s daily is just intolerable at times.

Can you talk a little about the patients and families you spoke with for the film?

I spoke to one young girl, her name was Hannah. She was at the time 19 years-old. She was suffering very badly from CRPS. She had a great support system. Her mother named Janet was there to work with her. CRPS had clearly run rampant on her and she was pretty much paralyzed. Her eyesight was affected. Her internal was affected, so she was also. She had to eat through a feeding tube. She actually passed away 2 days after completing the film from complications of CRPS.

I had a young girl who’s 15 years-old now, a beautiful young girl with a great support system. But once again, the CRPS has run rampant on her too where once again it’s affecting her internal and she also has to eat through a feeding tube. But she is trying to live the best life she can. She’s going to school now and even though she can’t really get around the way she should. She’s in a wheelchair at times.

I spoke to another young gentleman named Clark who was once a tennis pro who is now just trying to live the best life he can, getting ketamine treatments and just trying to keep the pain down.

I spoke with another lady named who is being taken care of by her 80 year-old parents who was living a productive life and just through the smallest of episodes, her life is now turned upside down. She recently had to move from south Florida to central Florida just to be close to treatment, so they had to sell their house and relocate. It’s very sad stories but people are dynamic and still fighting. At times, they give me hope because I wonder how someone going through so much can still be so positive and still keep smiling.

What has been the feedback of Trial By Fire?

Unbelievable. It’s been unbelievable. I think for people who have CRPS, for them this is real life. The film is very real. There are light moments but we tell a story that these people deal with every day. So, even if people have some hope and get some treatment and the treatment puts them in remission for a short period of time, it’s actually only a short period of time. And they also have their lives that are upside down now. Many have lost work, don’t work, have hard times with loved ones and have hard times finding support.

I think people are literally blown away and, from what I understand, many in tears and blown away from the truth and the reality of the film. It’s a very gripping film. For 54 minutes, it keeps you glued, wanting to know more, wanting to understand more or understand that this is your story. I had one girl say, “Thank you, Charles,” because her husband or fiancé maybe didn’t get it but I think he gets it now after the film. There was also another young girl who was there who I think her father didn’t get it or didn’t understand the severity of it. And now because of this, he was able to understand really what his daughter was going through because it’s hard to understand pain, especially when it’s someone else.

Is there something that people can do to help advocates and patients with CRPS?

I think the best thing they should do is learn about what CRPS is and learn about some of the symptoms. And if you are a caregiver, support is so key because you have to learn how to be a good support system and understand they are going through tremendous pain, mentally, physically and emotionally.

There’s a young girl, about 26 years-old and she was working in Manhattan, got injured on the job, now had to move back home to Florida to live with her parents where she’s not getting any income. She can’t work. She can’t drive. She’s in tremendous pain. You could imagine how heartbreaking that could be for someone. And, if you don’t have support or the correct support, you don’t want to be mentally abused or told something that could put you in a worse situation because you’re already requiring someone’s assistance for life. Being a real positive support role model for whoever you’re dealing with is very key because they’re in a vulnerable situation. So learning about the disease, being able to do the research, talk to the doctors, get information, work hand-in-hand, find a good doctor. That’s also key. I’ve seen several stories where even with Hannah, it took her 10 years to find one good doctor and a lot of people thought they were crazy and it was all in their head. A lot of these doctors actually did more harm than good mentally to some of these people. So making sure that you become active in their lives and in their medical life.

Where can people see Trial by Fire?

Right now we’re in film festivals. Then after that, we are in talks with many major distribution companies. So once we finish the film festival run and win some awards and we are doing some select screenings across the country. We just had one in Florida. We have another one coming up in Texas and then another one possibly in New York. But then we will be seen around the world very shortly in the next few months.

Is there anything else I should know about CRPS or Trial by Fire?

Trial by Fire is not just a movie. It’s a movement and that’s really what I wanted to do here. I didn’t just want to create a film. We have engaged thousands of people with CRPS and allowed them to be active in the promotion of the film. So we encourage them to tweet. We encourage them to Facebook. We encourage them to comment on stories. We encourage them to share. We encourage them to tell their friends.

I look at the ALS movement, I look at other movements and that’s what we want to create. I think what CRPS needed was a shot in the arm and it needed a voice, and Trial by Fire is more of a voice and a shot in the arm and also a sounding board for positivity and change because this film needs to be out so doctors can know more about what CRPS is. Because most doctors don’t know what CRPS is. You can imagine if you’re in, let’s say, Jamaica, how many cases of CRPS in Jamaica that will never be diagnosed because if doctors in America don’t know about it, you can imagine what’s in Africa, or in India, or in the Islands. So this needs to be seen so that we can educate doctors themselves so that they can diagnose these patients correctly and get them the treatment that they need, so that it may not get to a point where it’s something that could take their life. This is called the ‘suicide disease.’ It won’t kill you but it will make you wish you were dead.

Marie McGowin

Patient Advocate

CRPS Partners In Pain, Inc. 

Trial By Fire

Friday January 15, 2016 Trial By Fire made its red carpet premiere in Tampa.  Invited were people who were featured in the film.  Trial By Fire is a documentary film about CRPS.  Charles Mattocks (created and producer) has personal experience with CRPS.  His beloved mother has CRPS.  Charles set out to tell her story and the stories of others with CRPS.

Some of the recent press about the film:

http://linkis.com/selfdiscoveryradio.com/ZCOyc

http://www.huffingtonpost.com/bryan-cainjackson/a-pain-that-few-know_b_8975800.html


I am honored to be a part of this story that will bring CRPS into the limelight.  The film, as of today, is entered in three film festivals in NYC, Miami and Hollywood FL.  This is just the start.  We need everyone in the CRPS community to rally together and promote this film.  It does matter if you were involved in the filming or not.  We need to all cut out this petty infighting and rally around Charles Mattocks and Trial By Fire!!

CRPS Partners In Pain, Inc is wiling to work together with any individual or organization to get the word out.  We need a voice and Trial By Fire is giving us a voice.  WE WILL BE HEARD!!

Trial By Fire

Charles Mattocks creation; Trial By Fire a documentary on CRPS is complete.  The first screening will be announced soon.  In order to follow the film go to the trailer on YouTube


https://www.youtube.com/watch?v=aIB3V1BKaI8


on Facebook: Trial By Fire

on Twitter: Charles Mattocks

This has been a labor of love for Charles.  His mom has CRPS.  He has spent months interviewing, researching and filming people suffering with CRPS.  The final editing is done and now the work of getting into film festivals and on TV is next.  Please keep a look out for additional information on this amazing film.

Anniversary Of My First Ketamine

Fourteen years ago I had my first ketamine infusion.  In October of 2001, I flew to Germany to be the fifth American to receive a ketamine induced drug coma.  Here is my story.

In August of 2001, I was asked if I would like to participate in a study of ketamine on CRPS.  At that time, it was hoped that this ketamine coma would be the cure for CRPS.  My oldest daughter was in college and my youngest daughter a senior in high school. As a nurse, I knew the risks of a drug induced coma.  There were potential  complications related to bedrest such as blood clots and muscle waisting. There were the risks of infection from the foley catheter (drains urine), the central line, the endotracheal tube (goes into your lungs to attach to a ventilator) and the arterial line.   There was the risk that it would not work.  Unlike most studies where the cost of treatment was covered; we would be responsible for air travel, hotel costs, meals and the cost of the treatment which involved 10 days in the ICU.

What should I do?  Do I give up the chance for a potential cure?  Do I take the risk of leaving my daughters motherless?  It was not an easy decision but ultimately I thought that the potential benefit outweighed the risk.

A family member had to be with you.  My husband stayed home with my daughter.  My father (who had ALS) volunteered to go into a nursing home for two weeks so that my mom could accompany me to Germany.  Days before we were scheduled to leave, I began to freak out.  I was not sure that I had made the right decision.  Fortunately all did go well.

My mom and I flew to Frankfort Germany where my father's twin (my uncle) met us.  My father and uncle were born in Germany and spent their first 11 years there.  My uncle came to stay by my mom's side while I was in the coma.  He drove us to Saarbruken where the treatment would take place and drove my mom to and from the hospital when she was permitted to see me.  He was a lifesaver as I didn't have to worry about my mom as I was about to undergo this treatment.

It is not easy to put your life in the hands of physicians that you have only known for hours.  The night before I was going to be put into the ketamine coma, I had dinner with the physicians conducting the test and the other American patient of Dr Schwartzman's.  Ironically her name was Nancy as well.  Additionally, she had been a medical student at Drexel when I was a patient there.  We are pretty sure she was assigned to me.  The next morning, IVs were started and off to sleep Nancy and I drifted.  The ketamine coma protocol was evolving.  The previous 4 patients were not given versed and ativan.  They were psychotic until the ketamine was out of their system following their ketamine coma.  We were the first two to receive these supportive medications.  I was the first to be intubated because of my severe reflux.  The "other Nancy" ended up also being intubated.  Going forward this was part of the care plan.

In addition to being intubated, I had a foley catheter to drain urine, an arterial line so that arterial blood could be drawn to check my oxygenation, and pH. Blood pressure readings were done through the arterial line.  I had a central line as well.  PT came in and did passive range of motion to prevent some of the risks of immobility.  I was given the ketamine for 6 days.  It took about 24 hours for me to wake up afterwards.  I did not have hallucinations.  I did have some vivid dreams.  Before they put me under; I had good thoughts about my daughters.  I had good dreams about them.

I had some PT after the coma.  I was very weak.  At that time, I was pain free.  The next six weeks would be the only time since my accident in 1996 that I have been pain free. At that time, I was taken off of all of my CRPS medications before traveling to Germany (except for my Medtronic Pump which was in the process of being weaned).  There was no follow up ketamine protocol in the US.  December 26th, 2001 the burning pain returned.  I was devastated.  I called Dr Schwartzman and he prescribed all of the medications that I had been on before ketamine.

Two weeks after my mom and I returned home, my father died from his ALS.  He had made the ultimate sacrifice by spending 2 of his last 4 weeks in a nursing home so that I could receive this groundbreaking treatment.  As far as he knew, my pain was gone and I was cured.

My ketamine roomy also had a return of her CRPS pain.  She had been a surgical resident at Cooper Hospital in Camden.  Nancy knew the head of anesthesia, Dr Michael Goldberg at Cooper.  By February of 2002, thanks to Nancy's contacts, Nancy and I were receiving ketamine in the pre-op area of Cooper.  Drs Goldberg and Schwartzman had to figure out an outpatient protocol.  Over the next year, they tried a variety of dosages and frequency of infusions.  Of course, I needed someone to take me to and from these infusions.  I lived about an hour from Cooper at the time. My uncle came to the rescue.  My Uncle Jack was retired.  He drove to my house (30 min) to pick me up and then drove me to Cooper.  He waited 6 hours as IVs were started, infusions started, a 4 hour infusion and time to recoup.  His sacrifice of his time was amazing.  One day that I was not receiving treatment, he fell down the stairs at home and broke his neck.  The tables were turned and I was the one to drive to Jefferson and be sure that he was well taken care of.  My ketamine infusions were put on hold.

It wasn't until 2003 that Dr Schwartzman  got ketamine infusions approved at Hahnemann.  I did inpatient infusions there about every 6 months.  He also had an outpatient ketamine program. With all of these protocols put in place, in January of 2004, I returned to Germany for a second ketamine inducted coma.  This time my husband went with me.  The results were not as successful the second time.  I did get CRPS pain relief for about a couple of weeks, but the arthritic and orthopedic pain in my foot remained.  During this coma infusion they added Fentanyl to the mixture of medications given.  They felt that I needed to be on an opioid to keep the non-CRPS pain in my foot calm.  It was felt that it was this other pain in my foot that was fueling my CRPS pain.  We now know that opioids cause inflammation which works against the ketamine.  I was living proof of this.

Fourteen years later, although ketamine is not the cure that they hoped it would be, it is still the best treatment that there is out there for CRPS.  Many of us still have to pay out of pocket for this treatment.  Insurance Co's do not reimburse physicians enough to cover the costs of most physicians.  Medicare covers Ketamine but other insurance companies do not.  I still get regular ketamine infusions.  Some worry about the long term affects of ketamine.  Prior to going to Germany, I had a MRI and cognitive testing.  In 2010, I had these tests repeated.  There was no change in the MRI or cognitive abilities.  Studies in Australia go back 40 years.  They use ketamine for other conditions and their study shows no long term negative effects.  Studies that do show negative effects were done on people who abuse ketamine and other drugs.  Prescribed dosages of ketamine have not been linked to long term negative effects. There are long term negative effects of chronic pain.

I was fortunate to get in on the ground floor of ketamine infusions for CRPS.  Now, I am the Executive Director of CRPS Partners In Pain Inc.  We provide financial assistance to those who qualify so that they too can get ketamine infusions as pain management for their CRPS.

CRPS Study

For the fist time in a long time, a clinical trial is taking place around the country.  For more information go to www.studycrps/com for additional information