Mervyn Rothstein

Interviews

Douglas K. Anderson, Ph.D.

In 2018 Douglas K. Anderson was the recipient of the US Congressional Certificate of Recognition and The University of Florida McKnight Brain Institute established the Douglas K. Anderson Facial Pain Research Program to fund future research to find cures for TN and neuropathic pain.

Douglas K. Anderson, Ph.D., is eminent scholar professor and chair emeritus of the Department of Neuroscience at the University of Florida, College of Medicine, former director of the McKnight Brain Institute at the University of Florida. He is director of research and a trustee of the Facial Pain Research Foundation. He was interviewed by Mervyn Rothstein, who was a writer and editor at The New York Times for nearly 30 years and now writes the Stage Directions column – a series of interviews with theater directors – for Playbill.com. His first symptoms of trigeminal neuralgia occurred in 2005

Why did you want to be a scientist, and how did you become one?

I had a cousin who was a physician, and he kept after me to go into medicine, saying we would go into practice together. So between my junior and senior year at the University of Texas I got a summer internship at MD Anderson Hospital in Houston, which is a world-class cancer hospital. I was there for about three months, and about a month into it I realized that if I had to make a living as a doctor I would starve to death, because it was difficult for me to work with sick people. I was dealing with pediatric cancer cases and I would go home and cry. But I had spent about half my time working in the research laboratory, and I loved the lab. So I went back to school and changed my major from zoology pre-med to straight zoology. I didn’t tell my parents until Christmas – which was an interesting Christmas. And I went back to Anderson Hospital after I graduated and worked with a Ph.D. instead of an M.D. I got my masters at the University of Houston, and my Ph.D. at Michigan State in 1972.

You worked for 33 years for the Veterans Administration. What kind of work did you do?

I was there from 1973 until I retired in 2006. The V.A. was very good about allowing us to have appointments at medical schools, so I had a dual appointment. I was working on spinal cord injury both with my academic appointments and at the V.A. I was for a year the Department of Veterans Affairs Deputy Director of Medical Research.  

Why after more than 30 years of researching spinal cord injury did you decide to turn your efforts to finding a cure for trigeminal neuralgia?

The main reason was that spinal cord injury was so complex, because the spinal cord is so complex. We were working on locomotor function – movement – which is an incredibly difficult thing to do. Spinal cord injury is a constellation of symptoms – bladder function, sexual function, pain, temperature regulation, so many things. So I decided that instead of trying to hit a home run, I would go after a bunt single. One of the major complaints most spinal cord patients have is pain, and all scientists generally in a situation like that look for the simplest model. I’m not saying that trigeminal neuralgia is a simple model, but relative to spinal cord injury it is. One nerve, a big nerve, and the pain is in that nerve. I became interested in mechanisms and the patho-physiology of pain.

How is the Facial Pain Research Foundation unique from other research organizations?

We try to keep the bureaucracy at a minimum. We try to keep, while diversified, the number of projects we fund to maybe four, five, six at the most. We have a purely volunteer organization. Nobody gets paid anything. Our scientists don’t get paid. Our Trustees don’t get paid. Our support staff doesn’t get paid. I don’t get paid. Ninety-five percent of the money that comes in goes directly to the researchers for the research. I try to look for the best people in their field in the world to work for us. And to work with us.

How were you able to attract top researchers in the world to such a small foundation?

Instead of having them submit a grant, we say, this is what you’ve been doing, give me something we can hang a hat on, then go and do what you think will be exciting. So instead of their having to deal with a bureaucracy and submitting a grant every six months or a year, we, on a small scale, give them the money quickly, give them their leeway and see what they can do.  I call this “money with soul.” This is money given by people directly. This is not some faceless National Institutes of Health grant given with your taxpayer dollars. 

You were chairman of a prestigious neuroscience department and director of the McKnight Brain Institute.  Why is the Facial Pain Foundation’s research so important to you? Is it in part because a solution to neuropathic facial pain would also help provide scientific answers for multiple sclerosis, epilepsy, back pain, and other neuropathic pain?

Yes. I think it has a chance of making a difference. Mother Nature in my opinion is very conservative. The neurotransmitters in the gut are very similar to those in the brain, except you have different receptors and they work in a slightly different way. I look at this, and I think other people do too, as hopefully being sort of a Rosetta stone for pain, for neuropathic pain. Fundamental mechanisms are involved, and I think we can have a broader effect than just trigeminal neuralgia, also maybe diabetic pain and other pains. I think this research has a chance to be bigger than what you might expect it be.

How difficult is it to describe the science and the research to nonscientists?

For me, it is not too difficult. I’ve dealt closely in spinal cord injury and now in trigeminal neuralgia with the patient population we’re serving. I’ve always felt it was important to go to them and try to explain what we’re doing. I just hope that when I simplify it for lay people I’m not overdoing it so that I’m giving them incomplete or false information. 

At the beginning of 2011, the foundation set a goal of finding cures within ten years of establishing its research program.  At a minimum, what do you hope to accomplish before the end of 2020?

I’m hoping we will have a handful of genes or one gene we can hand off to others to test, and do animal studies and see if we can chart models of neuropathic pain by using the gene or the constellation of genes working together. To see if we have pain because they’re not working together, or we have pain because they’re overworking. Also, at the very minimum we hope we will have done human tracking with MRIs to chart the pain pathways that are involved, and locate the pain signal from the nerve to the brain, to where the brain can process it. And once you have that, then you have targets to do your intervention, do your injections. When you see which pathways are involved, you can define the neurotransmitters, so you can attack it that way. We are also hoping that the gene people will have solid data on how complex the gene interactions are – which is the alpha dog gene, or if there is an alpha dog gene, and how the genes interact.  

You wrote the following Facial Pain Research Foundation mission statement:

    “The Facial Pain Research Foundation is to establish a well funded translational research continuum that is dedicated to identifying the mechanisms underlying neuropathic facial pain and to developing groundbreaking therapeutic strategies that will permanently stop the pain of TN and related neuropathic pain syndromes.”

In your opinion, how are the foundation, its scientists, trustees and volunteers doing in relationship to its purposes and goals?

I think we’re doing fantastic, and I’m not someone prone to hyperbole. I’m very careful. I never would have dreamed in 2011 when we had zero dollars that we would now have collected a little more than $4 million. That $4 million has had a multiplier effect and raised even more funds for the research. I find that to be phenomenal. I think we are doing and our scientists are doing a wonderful job and making strong progress. I’m gratified and surprised that we have done as much as we have done in the period we have been in existence.

 

The Facial Pain Research Foundation 

Board Of Trustees

 

Founding Trustees

 

Myron A. Hirsch, Ph.B., an author, editor and book publisher, founded Whitehall Printing Company (a book manufacturer) in 1959.  The company prints thousands of books each year, including educational books on neuropathic facial pain for patients and their families, as well as health-care professionals. Hirsch also is editor-in-chief and publisher for Collage Books Inc. He is championing efforts to find a cure out of passionate concerns for his wife, Harriet, who experienced a return of trigeminal neuralgia in August 2010 after enjoying many pain-free years resulting from a Gamma Knife® procedure. He is a former president of the TNA-FPA, and was an active board member for 8 years. He and Harriet live in Naples Florida. Today Harriet is again pain-free.

 

Roger L. Levy, Esq., LLM, AIFA®, is a former attorney now serving as CEO of Cambridge Fiduciary Services LLC, a fiduciary consulting firm based in Scottsdale, AZ. Educated in England, he practiced law in London and was a partner in Taylor & Humbert, one of England’s oldest law firms, before immigrating to the United States in 1975 where he joined Saul Ewing Remick & Saul in Philadelphia. He holds a Master’s degree from Temple Law School.

Levy became an international spokesperson for the cause of trigeminal neuralgia for a compelling personal reason. For eight years, he suffered “in a wilderness of pain” that shut down his career and forced him into a dark corner of silence. When his pain was finally ended in 1997 through microvascular decompression surgery, he became an active volunteer with the TNA-FPA and Chairman of its Board from 2000 to 2013. He has continually championed the need to find a cure. He and his wife, Maddie, live in Scottsdale. Emeritus.

 

 

Michael Pasternak, Ph.D., an entrepreneur who co-founded the world’s largest retail hosiery company, started a Trigeminal Neuralgia Association support group in Nashville, Tenn. after suffering with trigeminal neuralgia. He later left the corporate world and became a board member and subsequently president of the TNA-FPA. He coordinated the association’s early national conferences for health professionals and patients, and helped it develop patient materials, support groups and a patient registry. Prior to his business career, he served as a professor at Vanderbilt University, the University of North Carolina and Michigan State University where he taught courses in Understanding and Improving Organizations and Leadership. Pasternak underwent successful microvascular decompression surgery for TN in 1992, and remains pain-free today. He and his wife, Sherrilyn, live in Gainesville Florida. 

As a Founding Trustee of The Facial Pain Research Foundation Michael is focused full-time on the Foundation’s research, fund-raising, and organizational activities.  Michael and his wife Sherrilyn enjoy their ten grandchildren, agility dogs, and travel.

 

 

 Trustees

 

Douglas K. Anderson, Ph.D., Eminent scholar professor and chairman emeritus of neuroscience at the University Of Florida, College Of Medicine (UFCOM) and McKnight Brain Institute (MBI).   As Director of Research of the Facial Pain Research Foundation (FPRF) Dr. Anderson has been responsible for setting the research priorities of the FPRF by selecting five diverse,

novel projects to fill out its research portfolio.  Dr. Anderson is known for his pioneering laboratory research that led to the nation’s first implantation of human embryonic nerve tissue in eight patients with a specific complication of spinal cord injury in order to establish the safety and feasibility of nerve tissue transplantation in humans.  Prior to his transplantation studies,

 Dr. Anderson contributed significantly to the development of the first frontline medication for acute spinal cord injury. A graduate of Michigan State University, he was selected to be  a senior research career scientist with the Department of Veterans Affairs in addition to serving 10 years as chairman of the Department of Neuroscience at the UFCOM and interim

executive director of the MBI for a year prior to his retirement.  He and his wife, Beth, live in Gainesville, FL. and in Carmel, IN.

Richard Baron, Esq., since 1980, has been the managing principal of the Law Firm of Richard Baron & Associates.  With almost 40 years of litigation experience in the Federal and State Courts throughout Florida, Mr. Baron has tried hundreds of cases dealing with commercial and transactional matters, family law matters, Florida Bar disciplinary matters, and criminal matters. Mr. Baron has been appointed numerous times as a Guardian Ad Litem to assist Family Court Judges in difficult cases with alcohol and drug issues and was honored by the Eleventh Judicial Circuit as the “Guardian ad Litem of the Year” in 2009.  In addition, Mr. Baron has argued many cased before the Supreme Court of Florida.  He has experienced the pain of trigeminal neuralgia and for many years was a Director of FPA-The Facial Pain Association.

Daniel P. DiCaro has extensive business experience as an executive in several public and private companies. With those companies, he has been a member of the Board of Directors and/or has been responsible in various roles for all aspects of executive level management including areas such as product and business development, finance and operations. He has a strong background in corporate finance, mergers and acquisitions, private equity and venture capital financing. He most recently served as an Operating Director of City Capital Advisors, an investment and merchant banking advisory firm starting in 2006 before stepping aside for health reasons in 2013.  He has experienced trigeminal neuralgia and is passionate about providing the leadership necessary to find the cures and end the pain for everyone.

Suzanne N. Grenell, MBA, is a creative writer, poet, motivational speaker, and author of several inspirational books, including End The Pain; Neuropathic Facial Pain Expressions and Impressions. She became an active volunteer in helping others after suffering with trigeminal neuralgia for a dozen years, and overcoming two bouts with breast cancer. She is now pain-free, cancer-free and medicine-free. After earning a Master of Education degree at the University of Minnesota and an MBA at Arizona State, she taught high school social sciences for six years and served in worldwide positions with Intel Corporation for 23 years. She is a former member of the TNA-FPA Board of Directors, and lives in Scottsdale, AZ.

 Elizabeth Cilker Smith is recently retired after 25 years at Cilker Orchards. There she served as Vice President assisting with the development of commercial, residential and office development in Silicon Valley, California. During that time she organized the Town of Los Gatos business Boulevard Community Alliance, served on the General Plan Committee, presided as President of Los Gatos Rotary and was a member of various nonprofit boards. After suffering from Trigeminal Neuralgia for 6 years she had a successful micro- vascular decompression surgery.  Since then her passion is to help others so no one suffers the traumatic pain that afflicted her. She served as Secretary of Trigeminal Neuralgia Association and later became the West Coast Coordinator of FPRF.

Through her parents, she facilitated the donation of the William H. and Leila Cilker grant to the DNA Genetic Research Project. Elizabeth holds a MA in Education, serves on the Cilker Orchards Management Corporation Board, and the West Valley Community College Advisory Board for the Bill and Leila Cilker School of Art and Design.  

 

Pat Tomasulo is the Sports Anchor and Reporter on the WGN Morning News.  He joined WGN-TV in June 2005.  Prior to coming to WGN-TV he was a Sports Reporter and Anchor in Buffalo, New York and in Rhinelander, Wisconsin.  In August of 2009, Pat was voted one of the top five broadcasters chosen to sit alongside Kelly Ripa as co-host to “Live with Regis & Kelly” as part of a nationwide promotion. He was also one of the hosts of “Shaq Vs,” a nationally televised reality show featuring basketball superstar Shaquille O’Neal. Pat and Amy Tomasulo have raised over $1,200,000 at four “Laugh Your Face Off”  comedy fund-raisers benefiting The Facial Pain Research Foundation at the Chicago Laugh Factory.100% of the proceeds were donated to The Facial Pain Research Foundation. Pat Tomasulo, the event's host and one of the scheduled comedic performers, has personal experience with the disease as his wife, Amy, has suffered from its devastating effects for years.

 Jay Winer, independent marketing/public relations consultant and fund-raiser, formerly served as executive director of public relations and community affairs for The Grove Park Inn Resort and Spa in Asheville, N.C. He achieved over 50 national television specials and print featurestories as well as regional and local news coverage, resulting in over $15 million in advertising value equivalency. He worked with his wife, Maddy, to book popular entertainers and direct over 100 theatrical and concert stage events. He is a leading supporter of historical resources, National Historic Trust and the humane society in the Asheville area. Jay has provided volunteer services to the TNA-FPA for twelve years. Although not affected by facial pain, he gained compassion for people in pain when he heard their stories and talked with them while videotaping a series of national TNA conferences led by his friend, Michael Pasternak. Jay said he became hooked on the cause of finding a way to bring relief to men, women and children struggling with terrible pain. He and his wife, Maddy, have homes in Asheville and Indialantic, FL. 

 Former Trustees

Jean Raymond is retired after working over 25 years in computer programming, software design,

network architecture, database management and tracking systems. Jean has rendered technical support for

companies such as Western Electric, Digital Equipment Corp. and Dartmouth College/Dartmouth

Medical School. She has served on TNA-FPA Board of Directors since 2010. Jean was appointed

to the FPRF Board of Trustees to serve as liaison with the TNA-FPA board. She lives in Middlebury, VT.

  

  

Albert Rhoton, Jr. 1932-2016 

 

World Neurosurgeon of the Year Albert Rhoton, Jr., MD., was a Facial Pain Research Foundation (FPRF) Trustee.

He had treated over 3,000 patients with trigeminal neuralgia and related neuropathic pain before he retired and became the inspiration for the FPRF’s cure research projects. His guidance and vision was evident when he proclaimed the founding of The Facial Pain Researth Foundaion was

 

“ONE OF THE MOST IMPORTANT DAYS IN THE HISTORY OF TRIGEMINAL NEURALGIA!”

 

In March, 2013 He said “it is time to find a cure!” and the Foundation’s

 

International Consortium of renowned scientists moved forward. 

 

Mervyn Rothstein Interviews

Todd Golde

 

Todd E. Golde, M.D., Ph.D., is executive director of the Evelyn F. and William L. McKnight Brain Institute of the University of Florida. He oversees neuroscience and neuromedicine research programs across the University of Florida campus. A professor of neuroscience and neurology, Dr. Golde joined the University of Florida faculty in 2009 and became founding director of the university’s Center for Translational Research in Neurodegenerative Disease, which he led until taking charge of the McKnight Brain Institute in December 2016. He is also director of the NIH funded 1Florida Alzheimer’s disease Research Center group of institutions.

An internationally known expert in the scientific understanding of Alzheimer’s disease, Dr. Golde has published more than 240 papers that have been cited more than 30,000 times, (https://scholar.google.com/citations?user=X_9xacsAAAAJ&hl=en), and has expanded his leading-edge research to include other neurodegenerative diseases, cancer and even malaria. He is lead investigator for the Facial Pain Research Foundation’s Gene Therapy Research Project, at the University of Florida, to find the cures for TN. 

 

 Dr. Golde spoke with Mervyn Rothstein, who was a writer and editor at The New York Times for nearly 30 years and now writes the Stage Directions column – a series of interviews with theater directors – for Playbill.com. His first symptoms of trigeminal neuralgia occurred in 2005.

 

How and why did you become Involved In the “World” Of Scientific Research?

TG: I’ve loved biology from as far back as I can remember. The real catalyst was when I was in my junior year in college. I didn’t know what I was going to do. I was thinking about going back and teaching at a boarding school for a while before I figured out what I was going to do with my life. But I was a biology major at Amherst College and I took a course with a professor named Richard Goldsby, a wonderful teacher, who was basically teaching a graduate level course to undergraduates. We had to write a term paper, a research-hypothesis type paper, the first time I’d had to do that in college, and the response back was that this was one of the best papers he’d read in many years, undergraduate or graduate. Please come talk to me. I think you might like to do research. 

Your laboratory conducts disease oriented research with specific, but not exclusive focus on neurodegenerative diseases such as Alzheimer’s disease and Parkinson’s disease. How did you get involved in developing a research project to find a cure for Trigeminal Neuralgia and related neuropathic pain?How did the development of this research project come about, and what motivated you to take on the leadership role?

TG: I make no claims about being a facial pain or trigeminal neuralgia expert. I’m just thinking opportunistically about how we can make a difference. When I came to the University of Florida, I was the founding director of the Center for Translational Research in Neurodegenerative Disease. The chair of the department of neurology at that time had hired somebody named Dr. Andy Ahn. Andy worked on headache and pain, and the director needed a place for him. I had some space at that time, so Andy was a scientific neighbor, and we would have discussions.

The University of Florida is one of the hotbeds in the world in terms of a gene therapy approach based on adeno-associated viral vectors – we call it AAV for short. A former dean actually discovered this virus. One of our senior faculty members participated in creating the first gene therapy vectors around it. My lab had already been using AAV vectors, but we doubled or tripled down when we came to the University of Florida. AAV has a naturally affinity to get into neurons.

So Andy sort of triggered this, but my bandwidth was stretched at that point – it’s still stretched. I kept on tweaking Andy to go down this road. Andy left academics, and at some point I said I should do this.

We felt it could be something that could be rapidly translatable. Finding a cure for trigeminal neuralgia is a huge unmet medical need, but it’s an orphan disease that doesn’t affect enough people to attract a huge amount of attention.

There’s a chance for harm if we get into humans, but the nice thing about working with trigeminal neuralgia is we can at least start our initial studies in humans in people whose next option is surgical ablation of the trigeminal nerve. That means that there’s an out if we actually happen to make people worse. When we do these kinds of trailblazing experiments or envision them in humans, we need to make sure that if something could go wrong we have a way out.

Now we’ll begin the animal phase of study – testing in animals. And I know how much this research can really affect people’s lives. It may not work, but we have everything in place to test it. So let’s try.  

If Gene Therapy isn’t new, why do you believe that it can work to block pain signaling in the nerve? 

TG: It really comes down to technical details. People have used the wrong vectors before that had their own liabilities. I honestly just don’t think people have thought that much about this approach.

Last year, gene therapy had its first really radical major success outside of the eye, which was with children who had a disease called spinal muscular atrophy (SMA). They were treated systemically with a AAV vector – a different flavor of the same thing. These kids basically get spinal motor neuron degeneration when they’re young, by the time they’re two years old, typically, they die. Fifteen children were treated with huge amounts of virus, and reports last October showed that every one of these kids was alive at two years of age. And those with high-dose vectors, many of them were almost asymptomatic. At that age the expected survival rate would have been eight percent. So there are some children walking and living normal lives after gene therapy who otherwise would be most likely dead.

So I think that was a turning point in the field, to say this, AAV-based gene therapies, really will have its place in modern medicine. And that study in SMA was much more heroic and much more challenging than what we envision. So I think the time’s right. We know we can deliver the gene to the nerve. So now it’s just finding the right gene that will dampen pain signaling in that set of neurons, hopefully without doing harm.

Supposing your theory and project is proven successful. What implications or lessons wil this work provide for other researchers?

TG: I think it would say that perhaps the gloves come off on gene therapies for many disorders, especially things that are targeting nerve cell dysfunction. 

Because of the Hippocratic Oath – physician, do no harm – we need an out, so we wouldn’t want to go and do this on intractable sciatic nerve pain. Because what happens if you make them worse – you can’t cut their sciatic nerve without serious implications.

But I think success could open up the door to many different approaches targeting pain. And given the current opioid epidemic, driven from people at least initially taking these medications to treat chronic pain – (whether that’s right or wrong or medically appropriate is another question) – I think this viral approach enables us to deliver the medicine or treatment precisely to the cells or organ or nerve and hopefully avoid the systemic side effects that would come from taking a pill or an antibody or other approaches.

And ultimately, I think it could also be relatively affordable. We’re jubilant about a medical success when a new treatment comes out for a previously incurable or untreatable disorder, especially when it shows a huge impact – for instance, something that saves somebody from a cancer that was previously untreatable. And then you dig in and find what the price tag of that therapy is and you go oh, my God, can we afford that as a society? So you never know – I wouldn’t be the person to set a price if we potentially have a therapy for this – but at least the development cost associated with this could be dramatically lower than development costs typically for current small-molecule therapies or for current biologic therapies like antibodies.

Read more ...

THANK YOU PAT AND AMY TOMASULO

AND CHICAGO

LAUGH YOUR FACE OFF Has RAISED OVER $1,200,000!!!

By Kris Gaganidze

The Fourth Annual LAUGH YOUR FACE OFF was held May 8, 2018 in Chicago’s beautiful neighborhood of Lincoln Park at the Park West.  This marks a new date and a new bigger venue!  All of this helped to make this year’s LAUGH YOUR FACE OFF a huge success. With temperatures in the high 70’s and a beautiful sunshine day to come out and help support The Facial Pain Research Foundation (FPRF) in their fight to find a cure for Trigeminal Neuralgia (TN).

To date LAUGH YOUR FACE OFF has raised over 1.2 million dollars for research for a cure for the rare nerve disorder called Trigeminal Neuralgia.  The   Foundation is currently funding six different research programs to find a cure for Trigeminal Neuralgia.  TN is known to be one of the most painful conditions known to humans.  It is often called the suicide disease because there is no known cause and no cure.   

My husband, Kyr and I had the great pleasure of meeting Michael Pasternak six years ago.  He is one of the people who started the Foundation looking for a cure.  We got involved with Pat and Amy Tomasulo four years ago when we were asked to help with LYFO.  What an honor to get to work with and know these amazing people.  They are the brains and Founders of the brilliant LAUGH YOUR FACE OFF! This year’s LAUGH YOUR FACE OFF took place at the Park West Chicago.  The venue was twice the size that we’ve had in the past.  So over twice the number of people (700) attended Saturday’s event.  The evening started with cocktails, appetizers, silent auction and raffle!

My husband and I had the privilege of checking in VIP guests, sponsors and TN patients.  What a joy to thank our sponsors personally and give hugs to TN patients as they entered the event.There was a separate raffle set up just for the TN patients.  I think they appreciated the thoughtfulness of a special raffle just for them!  And a huge shout out to all of the returning and new sponsors!  We appreciate your generosity and support! 

The evening started with the very funny Pat Tomasulo warming up the audience with his great standup comedy.  After Pat got the crowd laughing we never stopped.  He was followed by five, yes five great standup comics.  Thank you to Rocky Laporte, Brian Smith, Jeannie Doogan, Drew Frees and Mike Stanley.

Next, the beautiful Amy Tomasulo read the raffle winners, which was exciting for all of the winners of those amazing packages!  

Followed by two special videos of TN patients, which gave us deep insight and understanding into the daily toll that TN takes on a person’s quality of life.  It’s amazing to see the impact on the audience that those videos made.  It was emotional, inspiring and heartbreaking.  These two brave TN warriors brought tears to many people. 

Then the big give which raised twenty five thousand nine hundred dollars in a matter of minutes!  I continue to be astounded by how generous people are.  

LAUGH YOUR FACE OFF an event where I was surrounded by friends, family, doctors, scientists, TN patients and many supporters.  Everyone was there for a reason, to find a cure for Trigeminal Neuralgia.  Every person I met that evening truly cares about the patients and supporting the research for a cure.  LAUGH YOUR FACE OFF is a huge success because of all the people who show up to show that they care.  Thank you for a beautiful night that gives each and every TN patient hope for a better tomorrow.

 

 

 

 

 

 

 

 

Editors Note: Hanna Smith is a contributing writer for the Facial Pain Research Foundation. She is an award-winning journalist and assistant author of an in-progress medical biography detailing life with chronic pain. A student of bioclinical science, Smith studies surgical technology, psychology, physiology, and neurobiology to specialize in the medical treatment of individuals with disorders such as Trigeminal Neuralgia. Her father, diagnosed with Type-I TN for 26 years, inspired her to be dedicated to and engaged in the awareness, research, and medical practices that change the lives of people with chronic pain.

 

Shelly Forster:

 

The Purpose of Pain

 

 

Shelly with her family

By Hanna Smith

It was Shelly Forster’s most burning question: What is my purpose?

Fighting through reconciling the logistics of her new life diagnosed with chronic pain, rock bottom became her home in 2008 – and it left her with a choice.

2008 is the year Forster underwent two brain surgeries and was diagnosed with three chronic pain disorders – oral mandibular dystonia, trigeminal neuralgia and tardive dyskinesia – all of which transformed her from an independent woman working in nuclear engineering to a homebound patient fighting for her life.

“Pain is the great debilitator,” Forster said. “Chronic pain is a different animal all together, but takes on a new, terrifying element when it’s neurological.”

A congenital tumor inside Forster’s cerebellum was the root of her startling symptoms – muscular contractions in her neck, loss of voluntary control of her jaw and tongue, and splitting migraines.

For some time prior, Forster attributed the consistent headache and preliminary symptoms to stress at her job as a document control specialist for a nuclear engineering company. Such a job often required 70-hour weeks with round-the-clock hours. Forster assumed her symptoms to be somewhat normal considering the abnormal circumstances.

However, when the pain worsened and ultra-abnormal symptoms arose, she sought medical attention. Forster walked out of the doctor’s office with an emergency brain surgery scheduled the next day to remove the tumor inside around her cerebellum – the brain’s motor control center, which explained the involuntary movements in the cervical region of her head.

Dystonia impacts approximately 250,000 people in the United States, according to the American Association of Neurological Surgeons. Despite it being the third most common movement disorder, it is widely un-recognized by the public.

Forster underwent a surgery which removed the tumor. She was able to go home and began the recovery process. However, during a follow-up appointment, an additional MRI revealed there was a secondary tumor – this time woven within her cerebellum.

Forster for the second time was scheduled for emergency surgery, during which the surgeon filleted her cerebellum to remove as much of the tumor as possible. By the time the surgery was finished, however, 20 percent of the tumor was untouchable and too entangled in nerves. This portion still remains in Forster’s cerebellum to this day.

Prior to the operations, Forster says she understood her painful symptoms were in direct correlation with the tumors. Thus, following the surgical removal, she also assumed, based on medical opinion, that those symptoms would disappear.

 

Reality, however, did not meet those expectations.

Because of the neural damage coupled with the manipulation of the cerebellum during the procedures, Forster was left with permanent damage that resulted in her ongoing diagnosis of TN, dystonia, and tardive dyskinesia. It took visits to approximately four doctors before she was properly diagnosed.

THE FIRST THREE YEARS

With fluctuating medical treatments as doctors attempted to find a perfect medicinal cocktail to treat her pain – all the while attempting to acclimate to these new doses – Forster remembers the first three years of her illness as a fog.

During that time, she kept journals. Always a writer since childhood, putting her thoughts – no matter how jumbled – on paper helped her express and sort the emotions jostling through her mind.

“I took notes. I wrote things down about how I felt and what I was thinking – my faith and family and the roles both played,” she said. “I wrote down the good and the bad.”

Many days, Forster’s pain levels were off the charts and she was unable to function. It was during this time that she asked the pivotal question which determined the rest of her life: What’s my purpose?

Finding a purpose in the pain, she said, was the key for her survival by developing psychological motivation which would bolster her physical perseverance.

A wife, mother of three and now grandmother of three, Forster says she didn’t have to look far. Additionally, she began to recognize the unique position her illnesses put her in. Forster said this made her feel responsible for sharing her story with others – with the end goal of letting people with chronic pain know they’re not alone.

Fighting for her health meant fighting for her family and for others in similar situations.

Forster clearly found her purpose.

“It’s easy to accept your situation and move on,” she said. “But when you start paying attention to the battle and educate yourself, you’ll increase your quality of life.”

THE OTHER SIDE

Amid the turmoil of the first three years, a precedent was set in many facets of Forster’s life – experiences which developed the dynamics of what would become her new normal.

“I was able to discover trends,” she said. “I put a magnifying glass over the truth.”

Some relationships were lost. And although those years are met with what she says are some regrets, she knows the Shelly Forster of that time was often not reflective of her true character. During those times, pain sometimes spoke louder.

“It’s OK to walk away from relationships, no matter who they are, if that person cannot support them during their darkest moments,” she said. “We need to be relieved from that accountability.”

On the other hand, however, she says she knows the lost relationships proved who would stand by her side through the worst time of her life – and who couldn’t or wouldn’t. From that point, she established her core team of reliable people who became her baseline for support.

“When pain begins to define relationships, you are beginning to find out what other people are made of,” she said. “It’s the recognition that, because pain is part of my everyday life, those people are the ones that I need to walk away from for my benefit.”

Forster also established a core medical team. Because of the rarity of her disorders, she was referred to medical specialists, many of whom were considered cutting edge in their fields. But, being cutting edge, she discovered, did not equally entail compassion and willingness to advocate for patients. Through this realization, Forster learned to advocate for herself – even if it meant cutting off ties with doctors whom did not have her best interest in mind or were unwilling to help in her fight for her life.

This journey ultimately landed her at the Rochester, Minnesota-based Mayo Clinic, where she began undergoing botulinum toxin injections. According to The Dystonia Society, BTX treatment injects Botox directly into the targeted muscle which is impacted by dystonic activity. Although botulinum toxin is toxic in purified and controlled doses, it can help to relax muscular activity.

At the Mayo Clinic, Forster was treated by now-retired Dr. Joseph Matsumoto, who every three months typically administered 12 injections into her cervical muscles. The needles, approximately 30-gauge, are connected to a monitoring machine which judges the muscular-contraction activity at the time of injection with an auditory response. Always, the machine is buzzing at high volume when the needles are inserted. Forster’s husband Tom said sometimes he can see the needle bend slightly as it attempts to pierce the muscle.

Her daily companion for treatment is the pill box – containing pills assisting with pain relief, muscle relaxers, antispasmodics, blood pressure for hypertension linked to pain, and anti anxiety. Creating this fine-tuned cocktail took 10 years, and Forster said it still changes periodically as new medications are produced. It’s all trial and error.

 

NEW NORMAL

For all the absurdities and abnormalities in her life, Forster recognized trends and patterns – details that made her world a better environment. She learned her body’s unique responses to treatments or the lack thereof. Mitigating stress and being selective regarding which social interactions were most pertinent allowed her to venture from home without facing devastating impacts.

“What I’m going through is overwhelming enough,” Forster said. “I’m just getting through this moment. And not just get through. I’m trying to live this moment. Chronic pain patients need to know there’s life.”

Moving forward in this mindset, Forster said she’ll often plan ahead when she knows there is an important event she wants to attend – such as her grandson’s birthday party. In the days leading up to the event, Forster will rest more frequently and ensure she’s medicated properly.

Forster continued to write. This time, however, it was tracking her knowledge, medical progression, and jotting down pieces of inspiration that ignited fire in her fight for life. From psychology to medical management, Forster began to formulate her new normal.

At the same time, her purpose of pain began to grow arms and legs – and a plan came into focus. Forster fell back on her writing abilities, ultimately beginning work on a medical biography to share her story and gained knowledge to assist others who need direction in learning how to find a new normal after a chronic pain diagnosis.

Looking back, Forster recalls the many dark days when she considered what her purpose was. But, today, she is grateful to be alive with her purpose living and growing around her in the form of family and advocacy for others.

“The dark days behind me taught that the dark days to come are survivable,” she said. “Every time you have to apply that strength, it means you’ve got it in you for the next time.”

Letter from Tina

 

 

Have you ever stumbled across something so great and rewarding that you just can’t get enough of it?  I did, and my life hasn’t been the same.  And I am more than okay with that.

Living with chronic pain is challenging.  It can be a struggle.  A daily, grind it out, beg for it to be over kind of a struggle.  Sometimes I can’t do the things I used to do be able to do, or the things that made me, me.  But I also remember how much worse I felt and how destructive the pain was I experienced before I had microvascular decompression (MVD) surgery.  I still hurt daily but knowing how much worse the pain of Trigeminal Neuralgia can be, I “face” my pain and my life differently now.  A few months after my surgery, I decided one day I did not want TN to control me and push me back down into those dark depths of despair, isolation, and depression.

So I did what the millennials do these days.. I turned to the internet. One day while I was doing some research while volunteering for the Facial Pain Research Foundation (FPRF), I was looking into the ways people get TN- especially from head trauma. That search lead me down a path that covered our military and the way some of our wounded warriors have gotten TN from traumatic brain injuries.  That got me thinking. If we are losing some of our veterans to this terrible beast called PTSD.. and some of them also have ‘The Suicide Disease’, that’s unimaginably not fair! 

I immediately thought, how can I reach them??  How can I let them know about the FPRF and the research and work that is being done to stop this pain?  How can I get to them to remind them to Hold On Pain Ends?  If they don’t know about the Foundation, then they don’t know there is light at the end of the tunnel.. that scientists and researchers are actively working to stop the pain of TN and just maybe that will also help with some of their PTSD stressors.

 

One of those internet searches that day led me to an organization called Team Rubicon (TR), where their slogan is “Disasters are our business.  Veterans are our passion.” 

TR is a veteran based disaster response organization that also welcomes what they term ‘kick-ass civilians’.  I thought.. Well, I love doing physical labor, helping people, and have always wanted to delve deeper into volunteering so hey, that sounds like a great place for me. Besides, I promised myself at one point during this TN journey I’m on to try to step out of any comfort zones~ to really live, think and stay positive, appreciate and take full advantage of the moments of lesser pain, and do things.  So, I signed up that day on TR’s website, completed my prerequisites, became a Greyshirt, and in less than a month I was on the way to Texas to help the wonderful people in those communities who were affected by Hurricane Harvey.

That first deployment, that week, was amazing.  We were a group of about 70 strong staying in a church gymnasium in Friendswood, TX on cots, with lots of hard work to do, little sleep, and just happy to be there.  Signing up for a disaster response organization, flying from Florida to Texas knowing nobody, living with constant pain in the form of an hidden disease, and walking into a room full of strangers was more than a little intimidating.  But by probably half a day later, I had a whole new family, a TRibe.  Meeting and working with those veterans and civilians (from early 20’s into their 70’s) that week will forever be engrained in my memory and my heart. And being able to help our fellow Americans on their worst days was rewarding and meaningful to say the least.  Sometimes a homeowner would thank us for what we were doing, but in reality we were all thanking them.  It showed me on a whole new level what true humanity should be about.  It gave me purpose.  It gave the veterans I was serving with purpose again. And the whole experience filled my soul. We drank the TR kool-aid.

The friendships and bonds formed that first TR deployment still run deep.  Those strangers who became family know much of my story.  I am in contact with at least one of them weekly, if not daily. They check up on me, inquire about how I’m feeling, and keep me motivated.  And they know all about the Facial Pain Research Foundation now.  I have made sure to make others aware of TN and the FPRF should they run across anyone who needs more information or a listening ear.  Some of my new “family members” have even donated money on multiple occasions to the FPRF!!  To me, that is love.  And it is mutual.

I went back out to Texas 2 other times on disaster response deployments in Houston and in the Coastal Bend in the wake of Hurricane Harvey.  Each time brought new experiences, a whole new wave of friends who became family, and the chance to help our fellow Americans when they desperately needed us.  Being right in the middle of the destruction from the storm, doing strenuous, dirty, physical labor at no cost to the homeowner was some of the best work I’ve ever done.  We would joke all the time that you couldn’t pay us enough to do this kind of work.

But we would gladly do it for free!  Many times, the homeowners had no insurance on the houses we were working on or had a way to pay for repairs.  Even though we were gutting, or even demolishing their homes, we were still taking a financial burden off their hands.  Sometimes there were tears, but most always there was a hug and a big thank you to our Team.  Your heart hurts for them.  It could be you or family or your friends this was happening to.  In the 3 months TR was in Texas for that Operation, they deployed over 1700 volunteers who serviced close to 1000 homes.  I am honored and humbled to be included in those numbers. 

 Sometimes, in the middle of working on someone’s house.. doing a muck out or pulling up floors or carrying debris to the curb.. I find myself in amazement almost like, “When this one nail was being made, then boxed, shipped, sold, and used in the construction of this building, I’m sure whoever put it there meant it to be there for the long haul.”  And maybe it was there for decades or longer.  And then a disaster comes in and here I am, states or maybe even oceans away to pick it up or pull it out of a wall or a floor.  And then I would go on this whole “Wow” thought process in my head about everything I see the paint, the wallpaper, the shingles, the flooring, the homeowners.  All of those things have a story.  They all had a journey. And now they are part of mine. 

In May of this year, I went on my 4^th disaster response Operation, this time to Puerto Rico in the aftermath response to Hurricane Maria.  As the plane was flying in, all you could see was blue tarped roofs everywhere.  My heart sank.  Those tarps are only meant to last about 90 days. We are about 9 months out from the storm and there is still widespread destruction on the island. Seeing  so many damaged buildings from the air, I realized so much still needs to be done to get Puerto Rico and its citizens back up and running. 

Again, I walked into a room of Team Rubicon Greyshirts who quickly became like family.  As we split off into strike teams everyday, we all got to see different parts of the island, more destruction, and had countless, personal interactions with the locals.  We were honored to have a few of our TRibemates on deployment with us, who are Puerto Rican and were on the island during the storm. 

They themselves were affected by storm and still have damage to their homes, yet here they are helping those on the island who also need help.  Those people we consider family were priceless to us, educating us on what the needs still are for the people of Puerto Rico, where the concentration of needs still are, and informed us there are still parts of the island with no power. 

NO POWER!!  I had to let that truly sink in.  They themselves went without power for over 2 months.  I can’t even fathom what that must have been like.  They remember it like it was yesterday.

I happened to be in Puerto Rico during my birthday on that deployment.  My team and I went to work on a home about an hour and a half away from our forward operating base (FOB). 

This family lost probably 75% of their home and were staying in one bedroom that was left of the house.  A husband and wife and an adult daughter shared a bedroom with a bathroom in it. That’s it.  We spent the day cleaning up debris on the side of their house that was once their house.  The family spoke almost no English, so it was a blessing we had one of the locals on our team.  At some point, he informed the family it was my birthday.  This family surprised me with home cooked tostones, rice and beans, and salad for lunch (my favorite meal). 

THEN they surprised me with cupcakes and sang to me in English and Spanish.  I lost it.  I was so moved by their generosity and the efforts they took to thank us for a few hours of work at their house.  They had little, and yet they gave what they could.  That is what I know of the people of Puerto Rico.  The kindness of everyone we interacted with was humbling.  We were there to help, to try to do what we could.  In your heart, you just wanted to help every single one of them.

Over that week, we worked on many homes from doing damage assessments, to debris removal, to chainsaw work.  We even cut away some trees in one of their state forests to try to clear a path to one of the trails that provides revenue to the island.  But no matter how much work we did though, there is so much more to do.  It’s almost hard to feel accomplished when you drive the streets and see things that need to be repaired everywhere.  I left that deployment in awe of the absolute beauty of Puerto Rico and the brokenness felt for all the people we could not get to help.

I returned home for only a week before I got redeployed to return to Puerto Rico for the last wave of that TR Operation.  Again, flying into San Juan, I think I saw even more tarps than the prior flight path.  This time around, I knew a little more of what to expect and thought I would not be as shell shocked as the time before.  That didn’t happen.  Again, destruction so widespread that it leaves much concern as the hurricane season has already started up again.  The homes.. the businesses.. the infrastructure.. they can’t take another hit right now.  Having met some of the locals, some of my heart is tied to that island and the well being of those who call that piece of paradise home.  It leaves me troubled as to what we could be doing for them, or for the people of Texas, or your hometown, or anywhere in the world that disasters strike.  I am proud to be a part of the TR mission and culture.  I am honored to have done my little part for those that needed help, and I can’t wait to get out there and do it again.

The point I am trying to make is, I am a TN Warrior.  I hurt all the time.. whether I am on vacation, going to the grocery store, or doing disaster response work.  To be honest, the last is my favorite. Sure, I have some pretty strong TN attacks while I’m out there and giving it my all.  I may have to hang back and not chainsaw for a bit because my sunglasses and helmet are hurting my skull, or the heat or the wind may be getting to my face.  But for the most part, I won’t let TN stop me from my passion.  The hardest part for me is when others see me in pain and have no idea what Trigeminal Neuralgia even is.  They can’t “see” it, so to them it may not seem like much. 

Sad, but true.

When I was recovering from my MVD, I couldn’t wait for the day I was going to be able to get up and go do stuff again.  It took months.  I knew I wanted to be an example or somehow show what positivity can do to change your daily life.  Stumbling upon Team Rubicon was one of the best driving forces in my determination to not let TN control my life.  Sometimes that’s easier said than done.  I do still have the brutal, level 10+ episodes and days.  But those days in between, the dash, that’s where the money is.  That’s where you live. 

Through a collaboration with Bureau of Land Management (BLM) and TR, I now have my wildland firefighter certification (Red Card) and am looking forward to helping in that capacity as well. 

I am also the Orlando, Florida City Coordinator for TR.  Whatever I can do to always further my knowledge, stay out of any boring comfort zone, be prepared, and help those in need, that’s where you’ll find me.  Well, there and here.  I don’t know what I would do without the FPRF. 

For more information about Team Rubicon, please go to teamrubiconusa.org.

In service,

Tina Johnson, Director of Communications

Facial Pain Research Foundation