Drive Away The Pain, The Journey
of Frank and Max
By Frank Skoviera
Fifty three days, twelve thousand four hundred and eight miles, thirty seven states, seventy six meetings and over fifteen thousand dollars raised for research. That's how it ended. But how and why did The ‘Drive Away The Pain’ campaign begin? I'll attempt to explain.
How does one dig deep enough to convey what dealing with a disease described by medical professionals as “the worst pain known to mankind” is like? For someone like me who tends to keep such matters private; it's a challenge, a big challenge.
My Trigeminal pain is chronic. It has a complex set of pain symptoms, everything from burning mouth syndrome, complete right facial and oral numbness, ice-pick stabs, severe hypersensitivity (allodynia), and pressure pain that's feels like the check bone is going to explode. Then there is the gripping pain where the VII and VIII branches of the Trigeminal nerve act like a vice being tightened down to its maximum. Interestingly, that vice-like pain can be triggered from a specific spot on my lower neck. Facial movement of any kind intensifies the pain. Changes in weather pressures can barely be tolerated and a light kiss sparks the lightning bolts. So you might ask, with all this pain why would I subject myself to almost two months on the road dealing with all sorts of weather changes and speaking engagements and how would I manage this campaign?
From the sports field to the business world, I've always been a fighter and a competitor. I was going to do my best to win and to come out on top. That, coupled with a strong spiritual foundation gained from my youth, is who I am. Actually, it goes a bit deeper than that. I went on the DRIVE Campaign to make difference, to shine a light through all the dark turbulence we as humans face in today's world, and to prove to myself that I could bust down the doors that this disease closes in your life.
For the past fifteen years I have been in competition with the toughest competitor I have ever met, and perhaps the toughest I will ever meet. So how did Drive Away The Pain start and why was it so important to me that I left my family for fifty-three days?
Somewhere in the early hours of October 10th, I awoke to "Drive Away The Pain." I remember thinking what does that mean? I found out rather quickly as I rolled out of bed and started to write down this impulse or inspiration; call it an afflatus (thanks Ellen). One hour later the DRIVE campaign was in rough draft, and two hours later I was making an appointment to get my SUV wrapped with the DRIVE campaign advertisement. In ten short days, brochures, thank you cards, auto wrap design and installation, a new campaign vest for Max, a new campaign Facebook page and Twitter account, emails to our reader base, trip supplies, initial meetings arranged and yes a long conversation with my loving wife, Mary Ellen regarding what I was about to do. On the eleventh day, October 20th, I pulled out of my driveway in Tampa, FL, teary eyed, yet focused on the challenge of the unknown. Who would I meet? Would I be safe, and would my Service dog Maxwell, be able to handle the miles? Would I be able to handle the travel, the meetings, the road rage, and would this campaign resonate?
I think it's important to have goals and objectives, be it personal or business and this campaign was a little of both. I wanted to meet with our volunteers, TN patients and their families, Facial Pain Research Foundation Trustees, our researchers, anyone willing to sponsor or donate to the campaign and those who have absolutely no idea or concept of the Trigeminal Neuralgia disease. Additionally, I wanted to deliver a message of hope to those lost in the darkness of this disease.
As the FPRF Communications Director I receive hundreds of emails from people all over the world that have some form of TN. They are desperate to know about treatments and our research to find cures. Many are without hope; they don't see a future; and unfortunately the disease has control of their lives. To say that reading and answering these emails welled up strong emotions would be as accurate as saying the sun rises in the east.
On day one of the official start of the campaign I drove to the office of the Florida State Golf Association (FSGA) in Tampa to meet with my son Aaron, Executive Director Jim Demick, and the FSGA staff. I am a five year volunteer with the FSGA so they are much like family to me. Their personal and financial support of the campaign was overwhelming and rock solid. I really cannot imagine a better kickoff. Because of the FSGA’s national reach, and my son Aaron’s support and encouragement, I was able to meet with ten additional state golf associations on my journey. I can never repay the FSGA for their support and it's just nice to know and feel the bond that exists with them.
As day one of the campaign continued from Tampa to Orlando to Port St. Lucie to Boca Raton, I met with volunteers, TN patients, and campaign supporters. The day was filled with emotion, excitement, and a sense of accomplishment. This same emotion, excitement, and sense of accomplishment would build as each day concluded.
On day two, I left south Florida early to meet with Dr. Doug Anderson, Dr. Michael Pasternak, and Dr. Steve Dekoski at the University of Florida McKnight Brain Institute (MBI). We have two research projects in flight at MBI and although the key researchers were unavailable that day, it was still a great reception with UF Communications in attendance and a lot of picture taking along with words of encouragement….more fuel for the fire. Speaking of encouragement, it's time I mention Michael Pasternak, a founding trustee of The FPRF. We work closely together, and Michael was very supportive. I can still hear the excitement in his voice when, after reading the campaign brochure draft, exclaiming "you're going to be gone for a month!" It turned out to be closer to two months. From MBI, we traveled a short distance to see Facial Pain Association president, John Koff and Nancy Oscarson. I could not have been more pleased with the support received from John and Nancy.
The next day I departed Gainesville for meetings in Jacksonville and then Atlanta. And so it would unfold, over the next seven and a half weeks I would average about two meetings a day, the iPad mounted to my dashboard was lighting up every day with requests to stop and meet someone new. It was exciting, emotional, tiring, and fulfilling. I would meet and receive support from family members in Florida, the Carolinas, New York, and Texas. I was connecting with people who were suffering, both physically and mentally. Every surgical procedure that I'm aware of for trigeminal pain had been tried. Too many surgical failure stories, too many detached doctor stories, too many misdiagnosis, too many narcotics stories, and way too many stories of despair and hopelessness. It's important to note that stories of success were mixed in, patients that were getting some relief from medication, and others that were 'pain free' from an MVD.
I continued my journey up the east coast to meet Wolfgang Liedtke and the researchers at Duke University. Dr. Liedtke is impressive both personally and professionally. He provided an enormous amount of time and support to this campaign. He is also the lead researcher on one of the five projects in flight for The FPRF. Both Dr. Liedtke and I were interviewed by Duke Neurology Communications Director William Alexander. Mr. Alexander wrote a fabulous article about the Drive Campaign and the research perspective of Dr. Liedtke, I'm humbled to be in the same article with Dr. Liedtke and I can't thank him enough for his support. It was hard to top that visit at Duke, but visiting Dr. Scott Diehl at Rutgers University the following week came close. Dr. Diehl has been analyzing FPRF DNA samples of 500 TN patients for the past several months. He was kind enough to take me on a tour of his lab, show me the DNA samples and have a discussion on the analytical progress he is making. Does Dr. Diehl think there is a human genome link to TN? Well, let's just say he is cautiously optimistic. You get the picture.
From Rutgers to New York City, to New England, and to my hometown of Endwell, New York. Visiting my hometown was perfectly fitting for this trip, there were family members, former high school classmates, friends, and Maine-Endwell High School to visit. I was fortunate to receive an invitation from the ME high school principal who provided great support, signed one of my decals, did a short video for the campaign, and invited the local Fox News Chanel for a personal interview. The interview clip ran on the six o'clock news and it was pretty cool to watch it with my mother-in-law later that evening.
As I traveled from the Northeast through the Upper Midwest, I realized that patterns among TN patients were beginning to emerge. For example, the ratio of women patients to men was about 10:1. The women were relatively young when their symptoms began, aging between 20 to 30 years of age. A history of migraine headaches, other neuralgias such as occipital were present, and even a history of MS was frequently shared as I moved from one visit to the next. However, the pattern of dental office visits to neurologist visits outnumbered them all. There's no question in my mind that even minor invasive dental surgery and the numbing agent injections administered by dentists has a lot to do with the onset of Trigeminal pain.
I’d like to ask every practicing dentist if they understand the location of each patient’s peripheral nerves before they inject and do they know when these numbing agents become toxic to the patient. From a treatment point of view everything from standard medications used for TN and related facial pain were prescribed. The anti-seizure, anti-depressants, anti-psychotics, and of course opiates and other narcotics are prescribed to help control the pain. The most frequently discussed medications were: Neurontin, Lyrica, Tegretol, Cymbalta, and Clonzepam. All surgical treatments for TN were tried. Poor success rates were reported. Modalities such as acupuncture, massage, yoga, tai chi, dietary changes, spiritual growth, and even the use of medical marijuana in legalized states seemed to be at least if not more beneficial than the mainstream treatment plans.
This trip was not without the unexpected incidents that can happen while traveling. For example one Sunday morning I noticed Maxwell bleeding from the mouth. It appeared as though his gum tissues were cut, so I immediately searched the Internet for a local veterinarian. I found a Banfield office (we have a plan with Banfield) at a Petsmart that opened at 7:30am; it was 7:40 am. Within 20 minutes Maxwell was taken in for an exam. Fortunately, it was just irritated gum tissue. We walked out with antibiotics and were back at the hotel by 9:30am. The next day in Northern California my front tire blew as I pulled into my hotel parking lot. By 10am the next morning, a local dealership had it fixed and I was back on the road. I was very blessed in every case where unexpected events happened.
Several meetings occurred in California and I thoroughly enjoyed every one of them. Each meeting had its own special meaning and new friendships were created. Unfortunately due to conflicts in schedules, I was unable to meet with Allan Basbaum our researcher at UC San Francisco. Allan is working on 'Cell Replacement Therapy' a project that really intrigues me. Dr. Mark Lindsey and I tried to connect but I had already scheduled meetings in Arizona and Texas that meant I had to keep moving forward. I have a tremendous amount of respect for Mark and Allan.
As I traveled across the southern states, I met with FPRF Trustees, TN patients and surrogates, state golf associations, record producers in Nashville, and even some former high school classmates. But as I traveled east the sense of getting back home to my wife and family grew stronger and stronger, I found myself talking to Mary Ellen for hours as I drove. It reminded me of our pre-marital days when our phone conversations went on forever. I really missed her, and it was important that I wrap up this trip. I arrived home in Tampa, Fl. on December 11th to a wonderful family and friend’s reception.
I've been home for several weeks now and I've had a chance to reflect on all the people I met and the trip in general. Sometimes it seems so distant, so unreal, and so mystical but what brings it front and center are the people suffering from this horrible disease. It tears away at me as I recall the visits, so I've asked myself which one of all the tragic stories hit me the most.
Let me share….. I had been trying to arrange a meeting with a mother whose 20 year old daughter is a TN patient. This young lady also has Cerebral Palsy from birth which affects her vocal and motor skills. Our meeting was scheduled approximately about one hour west from their hometown. Everything seemed to be in place until the mother informed me that her daughter was just not up to traveling that evening and that a friend of hers would substitute in her place. Upon arriving at the hotel for that evening, there was a man in the lobby who came right over to me and introduced himself as the friend. We sat down in the hotel conference room and he began to pour his heart out about this mother and her daughter. I learned that in addition to the daughter’s health conditions, the mother was unemployed due to her daughter need for full time care. They survive on only a few hundred dollars a month. Immediate family support is nonexistent. This man, this friend was so caring, so compelling, and so concerned about this young patient that I had all I could do to hold the tears. I wish that I could say look we have a cure and we're going to help these two people and give this young girl a better life. We're just not there yet. Afterwards, the friend thanked me and I thanked him for being so supportive. We shook hands and departed. When I returned to my hotel room, I just sat there thinking how can I explain what just happened? How can I make people feel this case of desperation and the love in this man’s heart? The answer is I can't; you just had to be there.
Let me end by expressing my sincere thanks to each and every one who supported the DRIVE Campaign in every possible way. It was this tremendous support that enabled me to handle the miles, to handle the travel, the meetings, the road rage, and the reason this campaign resonated. Thanks, too, to my family, friends, and neighbors who were there to surprise me with a warm welcome home as I drove my SUV back down I75 to my home in Tampa.
Frank and Max.
P.S. View a movie of Drive Away The Pain on Facebook pages ‘Drive Away The Pain’ and ‘The Facial Pain Research Foundation’.