I’ve heard it said that you can judge people by the company they keep. If there’s even a morsel of truth to this, then I need to spend more time with Bob. Bob has endured Parkinson’s disease for over thirty years and it has attacked with a vengeance. I have also referred to PD as an opportunistic disease because it sometimes seems to know how it can hurt you the most and it’s there that it strikes. Maybe it’s just my imagination, but it almost seems that PD has a preference for people who are skilled, talented or accomplished in their personal and/or professional lives. Take Bob for example. A scholar, an athlete, business CEO, husband, father, soldier, and a man true to his faith…now who wouldn’t look upon this as living a charmed life, the American Dream? I’ll tell you who…that very man who has spent decades defending that dream against Parkinson’s…someone who at a low point could not dress himself, roll over in bed or feed himself without assistance. I don’t really know all the circumstances but from somewhere deep inside of him a voice must have spoken with power and resolve, yet softly so only he could hear…FIGHT BACK, ROBERT. YOU FIGHT BACK. So he did.
There’s no way to tell if it was a voice inside him or the great Shitzu rescue that motivated Bob to take action against PD and Bob hasn’t said, so I’ll tell the story as it was aptly told to me by Kristy. It seems that prior to the time that things started to turn around some for Bob, he spent most of his time bedridden or on the floor. Kristy: “At that time we had four new Shitzu puppies. One day when Bob was home alone and on the floor, our puppies found a very entertaining chew toy. The next hour or so they enjoyed chewing on his ears until someone got home to rescue him.” About nine years ago Bob had surgery at Ohio State University Medical Center to place a deep brain stimulator. Thanks to modern science this surgery gave him a new lease on life. Although he still has PD, he is able to be much more independent and enjoy his grandchildren.
Bob and I are the first, therefore, the oldest members of the “Baby Boomer Generation” born from 1946 to 1964. The generation that came before was called the “Silent Generation,” where children were indeed to be seen and not heard; there were rules and few exceptions. Boomers were named such because of the veritable explosion of births following the end of World War II. As the boomers grew up there were more exceptions than rules. Take the lid off the “boomer” generation and you’ll see The Mickey Mouse Club, the Beatles, the Korean War, Elvis and Buddy Holly, the birth of the last four presidents, the Ed Sullivan Show, a moon landing, the assassination of a president and a civil rights leader, the not so silent voices of social activists, hippies, yippies, and yuppies. Most of all, the latter decade of this generation is known for the start of the Vietnam War and a nation divided. But that’s getting ahead of our story. Let’s go back to 1946.
Cedar City has built two new hospitals since June 23, 1946, when Ferrel and Alta Woodard Spencer welcomed the second of their eight children in what is now the Leavitt Building in Cedar City. Bob grew up “over the mountain” in Glendale, UT and if you can’t tell just by being around him, he has a lifelong love of sports. Daily, he would race to his uncle's house at the end of town for the newspaper to read about his favorite teams and players. Bob was a star basketball player and participated in track at Valley High School in Orderville where he was also a top scholar and a favorite among his classmates and with his teachers. He was not overjoyed, however, when one of his teachers encouraged him to take typing. It turns out that class might have been a real lifesaver.
Because of his excellence in the classroom and on the court, Bob was encouraged to try out as a walk-on to play for Snow College. Instead, he decided to go to the University of Utah. After completing his first year at the “U,” he returned home and began making preparations to serve a mission for his church. The war in Vietnam and Uncle Sam had other plans and he was drafted into the service our country by the US Army. After boot camp and training as a military policeman at Fort Polk, Louisiana, Bob found himself serving as an MP in Oakland, California. Assigned to investigate an accident at the far reaches of the base where there was no lighting, Bob’s report was to use navigation indicators north, south, east and west. Upon receiving Bob’s report, the sergeant said, “That’s not north Spencer, you dummy,” to which Bob replied, “I’ll guarantee it's right.” The sergeant checked Bob’s directions against the post map and returned to exclaim, “You’re right, Spencer. How did you know that?” It was Bob’s father, not the US Army who taught him orienteering, using sticks and the Big Dipper to locate the North Star and thus the north-south line. Maybe the sergeant needed to spend a little time with Bob’s dad in Long Valley, for he had been on base for six years and didn’t know that.
Haven’t most of us heard stories about a person of accomplishment in science, technology or business…Bill Gates, for example…saying to a surprised audience that one of the most valuable classes they ever took was typing. However, I’ve never heard of someone claiming that typing may have saved his life…until now, that is. The military was soon to send Bob to Southeast Asia and the war in Vietnam. When he arrived, his sergeant asked who might be willing to be company clerk. When no one stepped up, he then said, “Let me put it this way--would you rather be out in the jungle being shot at or at a desk in an air- conditioned office?” Forgiving the teacher who urged him to take typing against his will, Bob stepped forward and offered his fine typing skills which, by the way, improved over the course of the next year.
After serving his time in the military, Bob’s life got somewhat back on course when he rekindled his pre-draft plans to serve a mission for the Church of Jesus Christ of Latter-Day Saints. After two years serving in Chile, he resumed his post-secondary studies at what was then College of Southern Utah (later SUSC, now SUU). His undergraduate major was political science and he also plied his leadership skills as president of the Latter-Day Saint Student Association (LDSSA).
Bob met Kristy Jensen at a church fraternity/sorority picnic. She was taking college classes at the college during her senior year in high school. Bob and Kristy were married in the Manti Temple forty-four years ago in 1974. Today, Kristy provides direction and leadership to Southwest Parkinson’s Support Group.
The newlyweds moved to Phoenix in 1975 where Bob earned his MBA at The American Graduate School of International Management. While working toward his MBA, he worked in maintenance for a property management firm. Upon completion of his degree he was offered a management position, only to later become CEO of Fjellstead, Barrett and Short, the largest property management company in the Phoenix area.
Bob and Kristy have eight children (6 daughters and 2 sons) and 18 grandchildren. Five of their children live in Utah (Cedar City and Salt Lake), two in Colorado,
and one in Texas.
Bob is a surprise. When Kristy assists him through the back door and on to the gym floor, you don’t expect to see him ten minutes later dribbling the basketball down the floor…and sometimes he can’t. But it’s those “breakout moments” with Bob that are wonderful to witness and encouraging to all of us. Dopamine is such an important neurochemical that when the dopaminergic system goes awry, there is seemingly no end to the number of possible symptoms. While not necessarily rare, one of the lesser seen symptoms of PD is the inability to control the eyelids which is both disconcerting and dangerous. Often needing help to the FitLights station, Bob struggles to keep his eyes open. Once his routine starts, his eyes come open and stay open, as he quickly and skillfully disengages one light after the other. After a life threatening illness that led to abdominal surgery last March, Bob was back at the gym within a matter of a couple weeks and fully engaged shortly after that.
Bob and Kristy are grateful for Rock Steady Boxing in our community. Bob reports that the program has made him stronger and allowed him to be part of a fraternity of amazing people who inspire him to keep fighting back. In their own words, “We are grateful for the many volunteers who give generously of their time and talents. You all make life enjoyable and productive.”
For your courage and strength as a bona fide PD warrior,
Bob Spencer, you are ROCK STEADY.
“It [Parkinson’s Disease] may take its toll on me but it will never beat me. I’m going to fight it all the way.” -- Tom Walker, SWPDFIT Warrior
So, what is it that puts the heart of a warrior into a man born and raised in the railroad town of Milford, Utah, during hard times in the middle of World War II. Much of what I know about Tom’s early years growing up in rural southern Utah, I learned from his delightful book WALKER: PUT A SOCK IN IT. This book is an engaging account wherein Tom opens up about his childhood and his formative years pursuing his dream of one day becoming a teacher. The reader is also treated to a guided tour of special education by the man whose job it was to navigate this previously uncharted territory in order to create and implement a program to serve children with disabilities and their families in the vast five-county area of southwest Utah.
Growing up fourth child in a family of four kids is not reserved for the weak or faint of heart. Siblings always have plans for you that might not be in your best interest. Surviving an encounter with red ants and an aerial launching from a bent sapling courtesy of his older siblings could have been just the toughening up Tom needed to deal with Parkinson’s disease (PD) later in life. Like most small town kids, he would learn early to take advantage of what’s offered and come to appreciate the value of hard work. As far as I can tell, life for kids in any small town in Utah was not built upon the principles of democracy. They had little league, so he played little league. He was the only southpaw catcher on the local team which required a special order mitt…quite a big deal in those days. As time went on, he worked pumping gas at the Chevron and at the White Market grocery. After joining the Army National Guard upon high school graduation, he completed his training and returned to Milford. But this was not to be his destiny, not by a long shot. And a lady named Mrs. Brown had already seen to that.
Today, countless students, parents, teachers and administrators owe a huge debt of gratitude to Tom’s second grade teacher, Mrs. Brown, for it was she who inspired him to become a teacher. The journey to realizing his dream was a winding path with many detours and stops along the way. Tom writes with great fondness about his ten summers working at Bryce Canyon. Starting as a dishwasher, he advanced through the ranks to lodge manager. His time at Bryce not only provided employment but was also a welcoming atmosphere for him to sort things out and strategize his next move on his quest to find that first position in the classroom. Once he received his bachelor’s degree in the social and behavioral sciences with a secondary teaching endorsement, he returned once again to the remarkable landscape that is Bryce in order to make ends meet while, at the same time, make Mrs. Brown proud by living his dream of becoming a teacher.
Little did Tom know that some 2300 miles away in Washington DC, the United States Congress was already making plans for him…plans that would change his life forever. Public Law 94-142 required every school district in the land to provide an education for young people with disabilities and Tom’s signature on a contract in the fall of 1971 was his pledge to make it happen in southwest Utah. So, Mrs. Brown’s former student, young Tom Walker, was going to be a special education teacher.
Having an adult special needs son myself, who was brought up under the broad embrace of PL 94-142, gives me a certain amount of licensure to offer my own definition of a special education teacher. To be a special ed teacher one must first go look closely in the mirror. Is that person looking back willing to bring education to an extraordinarily diverse group of learners, each of whom has his or her own learning style, and one that they may not share with another single person on the planet? Is that person in the mirror ready to discard any notion of “one size fits all?” because invariably it doesn’t. There’s more. A special ed teacher must also be willing to be a counselor, family advocate, coach, bus driver, politician, chaperone, referee, policeman and paramedic. And that’s just the first day. Trained to be an educator, Tom’s first task on the job was to start to review the curriculum. WHAT? You’ve got to be kidding. Better add curriculum developer to the list above. As time went on, anyone who knew anything about special education came to know the name Tom Walker, the man who built and delivered the whole program from the ground up in this end of the state.
As the old saying goes, the best teachers are often taken from the classroom to become administrators. And so it was that after 20-plus years in the special ed classroom, Walker received his administrative endorsement in 1989, served as a vice-principal, principal and retired in 2005 as Director of Special Services for Iron County schools. His achievements over the years did not go unrecognized. Tom was twice recognized as educator of the year, once by the Delta Kappa Fraternity and once by the state ARC in 1974. In 1991 he received the Utah State P.T.A. Golden Apple Award and the Iron County School District Golden Apple Award in 2005. Perhaps the best reward of all is the treasure of the rich experiences both in and out of the classroom and knowing that Mrs. Brown has somehow witnessed all of this and is smiling.
In 1975 Tom met Carol (the future Mrs. Tom Walker) when both were working at the Town and Country Restaurant. Carol recently retired after serving preschool students with disabilities for over three decades. As Tom put it, they have four amazing children, two of whom are educators. His family is very supportive and respectful of his time, making sure he is able to attend those activities that improve his quality of life as someone with PD. Tom enjoys fishing, hiking, travel, and working in the yard. He also enjoys hanging out with his friend and former colleague of forty years, Steve. Together they have continued to participate in the famed WOF fun run. WOF? Oh yes, that stands for “Worthless Old Farts.”
Tom received the official diagnosis of Parkinson’s disease about two years ago. Like so many of us, he is quite convinced he was experiencing symptoms several years prior to his official diagnosis. He has been a consistent, hard-working member of Southwest Parkinson’s Fitness Alliance almost from day one, and he complements his workouts in the gym with weight lifting and cardio on the tread climber and stationary bike at home. He contributes significantly to the sense of community that has developed among the warriors. Ever the educator, Tom has a particular fondness for working with Rural Health Scholars who volunteer. In fact, last year he bought Rock Steady T-shirts for all the student volunteers. In Tom’s words “I love the fitness program and the Rural Health Scholars. I have a whole new circle of friends and feel a great bond with everyone involved. The friends with Parkinson’s are all heroes because of their work ethic and the courage I see every day.”
So, again, what puts the heart of a warrior into Tom? Tom’s life, career and his attitude about PD is the reflection of someone who can take what life throws his way and keep moving forward, always forward. TOM WALKER IS ROCK STEADY!
THANK YOU, JENS
If there is any truth whatsoever to the adage that the older we get the less we like change, then I must be 110 years old as I sit to write this message of gratitude and farewell to Jens Howe as he will soon be leaving us to continue his preparation for entrance into a graduate program of physical therapy. The best part about working with SUU Rural Health Scholars like Jens is just that, working with Rural Health Scholars (RHS). They are the best of the best, the select few who have made a conscious decision to endure the rigors of courses like physics and chemistry, job shadowing, tests, applications, more applications, interviews, volunteer work, years of graduate study, more tests and punishing long hours all in pursuit of a career making other people’s lives better. To my way of thinking, Jens Howe is the “Top Gun” of the 2017-2018 RHS program, the best of what they stand for.
The worst part of working with SUU Rural Health Scholars is that they so quickly come and go from our lives. We must accept as reality that we are but one of many stopping off points in their journey toward a life of commitment to the health and wellbeing of others. Hopefully, their time spent with us is mutually beneficial and they depart with a valuable perspective of life with a chronic, progressive disease. So, when they are ready to take that next step down their career path, we mustn’t keep them from it.
For those of us struggling with Parkinson’s, we participate in SWPDFIT for its therapeutic value…we must do this. Jens participates because he can’t help himself. He is incapable of just being a spectator on the sidelines when there is a situation that can be improved and lives made better by his involvement. He’s that rare person who runs into a burning building, with no thought for himself, when everyone else is running out. The moment I told him about my plans for starting Rock Steady in our community, his instinctive predisposition for helping others took over. His enthusiasm was palpable, and he became fully invested in the idea. This was to be Jens’ new calling.
Everything from negotiating a location to ordering and installing equipment, from recruiting assistants to promoting the program has his fingerprint…he has been there every step along the way. To the best of my knowledge, he is the first person in Utah south of Lehi to become Rock Steady certified.
Jens’ strongest asset, however, is in the arena, the field of battle where together we fight the common enemy, Parkinson’s disease. To be an effective combatant against PD symptoms, forced intensity exercise must be employed; there simply is no other way. As our coach he takes us to that performance threshold at the precipice of physical and mental exhaustion, then he tells us to push harder, beyond what we think is even possible. And when we return the next time, we come ready to do it all again. That indeed is the way it works, there simply is no other way.
“To everything there is a season and a time for every purpose under heaven.”
The year was 1991 Southern Utah State College had completed a rigorous academic review and became Southern Utah University. That very same year, some 250 miles away, Jens Howe was born in Salt Lake City. He is the second of six kids, belonging to Joe and Kjirsten Howe, all of them accomplished athletes.
Lest university status be nothing more than a name change, it would become necessary from the start for SUU to establish a brand and distinguish itself, not just as relevant, but as necessary. So how is it that 27 years later a star athlete (football, basketball and track) from Manti High School with “service to others” in his DNA would end up at the one university in the entire region with “service to others” implicit in its mission statement? Who would have known that Jens would become an SUU Rural Health Scholar and I would end up in the RHS offices seeking support for a Rock Steady program at the same time? With over 140 possible fields of study, who would have thought that he would receive his degree in 2018 from the same department that I chaired 13 years earlier? My wife, Jill, says sometimes she thinks I was given Parkinson’s for a reason. Although the scientist in me says otherwise, sometimes I believe she’s right. Otherwise, how would I ever be in the position I find myself in today, surrounded by extraordinary people and writing about a remarkable individual, Jens.
Like so many of us, Jens’ path from the time he was awarded a football scholarship at Snow College (where he was also homecoming king) to the doors of Snap Fitness in Cedar City had a few detours along the way. Before eventually arriving at SUU, he sojourned to Snow College in Ephraim, to UVU in Orem, and Daytona, Florida, where he played football and studied at Bethune Cookman University.
Having advised pre-veterinary students for over twenty years, it came as no surprise to me to learn that Jens’ first career choice was to become a veterinarian. It takes a special kind of compassion and empathy to attempt healing creatures with which we have no common form of communication, but Jens appears to have the ability to read movement, attitude, posture, expression and other non-verbal cues that might signal wellbeing, discomfort or impending malady. He has demonstrated that he has this ability not just with animals but people as well.
Jens’ innate drive to serve the needs of others appears to have been amplified by three signature events. First, half of his two year LDS mission to the West Indies was spent in Guyana where he fell in love with the people of the country. The second event came soon after his return from his mission whereupon he organized a humanitarian group through the SUU EDGE Program to return to Guyana to build and repair houses for the people who had endeared themselves to him while he was on his mission. Finally, it was his role in starting and delivering the Parkinson’s fitness program that was the confirmation he needed that he was on the right path. If I may quote Jens’ wife, Jessica, “Seeing that strangers pulled together as a team lit the fire of leadership and unity he’d been missing from his years in sports. To see the progress made daily, the improvement of independence and quality of life have made Jens proud to be a physical therapy major…Jens has also built a deep friendship and love for each of you and brags to me about each of your accomplishments in class. You’ve truly loved my Jens. He can feel it. I can’t thank you enough.”
Jens and Jessica first laid eyes on one another at his homecoming party where she showed up for the free food. One month later, he asked her on a date and one year after that they were married. That was five years ago this year. An occasional and very welcome visitor to the gym, their beautiful girl, Laney, celebrated her second birthday last April 25.
Jessica reminded me that Jens is also a gifted artist. What I’ve seen of his artwork certainly does attest to that fact. Last year I saw some of Jens’ barn wood painting and it is truly exceptional. We often get so involved with the excellence of his contribution to our fitness program we forget that he might have other hobbies and interests. He is also a collector of artifacts, arrowheads and pottery. And he loves to research each new place he visits to see what treasures might lay in wait. We also must acknowledge that a “new place” may not be too far off in his future.
As Jens, Jessica and Laney pull out of town on their way to that new place, if he looks in the rearview mirror he will see a fading reflection of the sad but grateful faces of a community of warriors against Parkinson’s disease. We know our battle with Parkinson’s is not over, but he has prepared us to fight on. So, to Jens, Jessica and Laney, when that day comes, depart knowing that you are loved and respected. You will always be a part of us. Travel safe; the world awaits you.
Right after I met Jens, I gave him some materials written about PD and by people with PD. He commented that he really liked the following adaptation from Shakespeare’s Henry V by Rock Steady Indianapolis boxer, Pete Stewart:
“Those with no stomach for a fight, let them depart in peace...Those who bleed with me this day on the field of battle, they are my brothers and my sisters. We fight a common foe, one that may claim our bodies but will never claim our soul. We will fight to the very end.”
WE ARE…ROCK STEADY
He just stood there, as still as a cat stalking a bird. Tennis ball in hand, he was at the end of the gym floor opposite the punching bags. The wind up and the throw. WOOSH…the ball sailed past the heavy bags. Well, that’s what I thought he was aiming for, but I was wrong. WHAP! The speed bag swung back and forth on the squeaky hanger while the tennis ball bounced lazily along the floor. The man just hit an 11-inch speed bag with a tennis ball from the full length of the workout floor. Before I could say “betcha can’t do it again,” Danny smiled as if to say “no big deal, just another day at the office.” And that is what playing baseball from ages 8 to 36 does for a person. He played nearly every position with the hardball and, based on what I had just witnessed, one of those positions had to be pitcher.
The son of a preacher man, Danny’s father was indeed a man of the cloth, a Methodist minister whose calling demanded frequent relocation. Although he was born in Silver City, New Mexico, in 1964 (the year I graduated from high school, by the way), he and his family (which includes one older brother) lived in Texas until it came time for him to start 8th grade. He attended junior high school and high school in Las Vegas [New Mexico] where he was a multi-sport athlete in both individual and team sports. His prominent physical asset being speed, he ran track and captained his high school football team (as wide receiver on offense and cornerback on defense) his junior and senior years. Danny’s competitive spirit shines through during our Rock Steady workouts. He’s one of the engines that drives all of us to work harder.
The ink was hardly dry on Danny’s diploma from the 1983 graduating class of Robertson High School when his father was once again transferred, this time to Las Cruces, New Mexico. After a year off, Danny started college at New Mexico State University while working full time at a tool store assembling hand tools. He soon found that he had to choose between fulltime work and fulltime college, but not both at the same time. And so it was, he struck out on his own, moving out of his parents’ house and taking employment at a small auto mechanics shop.
Danny was quickly hired away by another shop that gave him an opportunity to learn all about auto repair as well have a chance to move up in the trade. After two advanced auto repair certifications, he was promoted to shop foreman.
People with mechanical aptitude and good technical skills always seem to be in demand and, regardless of the type of equipment, they just seem to know how things work. Danny was destined for work requiring security clearance designing flight data recorders and electronic warfare devices for two military contractors. This was not, however, before going back to school for his degree in Electro-Mechanical Design and 3-D solid modeling. After 23 years in Las Cruces, going from changing tires to designing military devices, Danny moved to Cedar City in 2005, designing switchgear. It was there that Parkinson’s would first visit him, causing tremors that interfered with his keyboard and computer mouse work.
In the old west, where the size of the country was vast and the population was sparse, it was common for brothers from one family to marry sisters from another family. Think “Seven Brides for Seven Brothers.” As North America became more populated, potential mates had more choices. So it must have been by mere coincidence or maybe it was destiny that Danny fell in love with Shari, the older sister of his brother’s wife. Danny and Shari will celebrate 25 years of marriage next year.
While Shari and her sister were born in the Great Lakes State of Michigan, most summers the family would travel to Silver City, New Mexico. As it turns out, Shari’s mother was born in the same hospital where Danny was born. But it doesn’t stop there. She (Shari’s mom) was also a student at Western New Mexico University with Danny’s father. But none of these connections were made until after 1991 when Danny met Shari at his brother’s house. Just when you get to thinking that the world is a busy place where two paths never cross, think about Danny and Shari’s lives and the world will get a whole lot smaller.
His confirming Parkinson’s diagnosis was not until October 5, 2016, making Danny a relative newcomer to the disease. However, after a little research, it became evident that he had been struggling with symptoms for over a decade. His family doctor had started him on Carbidopa-Levodopa well in advance of his official diagnosis, but Danny knew that medication alone would not slow the advance of his disease. He learned about Rock Steady Boxing only to also find out that no program existed in this area at that time. Then he saw on Facebook that there was going to be a class in Cedar City and, in his own words, he “immediately contacted Daniel Dail for information. That was the best thing I could have done. It has helped me so much that I can’t believe it. I love the group, the volunteers and the Coach, Jens Howe, and want to thank them for all the help.”
Danny is always among the first to arrive at the gym on workout days and he’s clearly one of the hardest workers when he’s there. You can count on him to cheer you on and push you to get your best possible workout. Danny is the STEADY in Rock Steady and, since we have chosen to fight the beast rather than surrender to it, we’re lucky to have him on our side.
SOMETIMES IT’S THE QUIET ONES –-
Sometimes you don’t even know it when he quietly enters the Rock Steady Boxing room at Snap Fitness. He moves almost stealthily along the row of chairs toward the north east corner, where he’ll have a seat and start unpacking his gym bag. Don’t get me wrong, Bill is not at all unfriendly; he’s just a little quiet. But he’s quiet in a way that lets you know that here’s a man with a story that needs telling. When he says something humorous, it’s a lot funnier than someone who’s always making jokes; when he says something serious, you tend to listen to what he has to say. Bill always returns a greeting with a friendly smile and a nod. Putting everything he has into each workout, he’s a fierce warrior.
As I have learned a little about Bill and Judy I have learned at least one reason for his quiet nature…he and Judy have nothing to prove to anybody. Behind that quiet demeanor resides incredible compassion, and strength. Read on.
Sandwiched between an older and a younger sister, Bill was born in Little Rock, Arkansas. The family relocated to Tucson then to Las Vegas for high school and college years at UNLV. Coincidentally, or maybe it was meant to be, Judy’s family relocated to Las Vegas from Ogden at the same time Bill’s family came from Tucson. It was there they met in 1964 (Bill’s self-described most memorable experience), and they have been together ever since. It’s sometimes hard to comprehend all the events that must happen precisely when and where they do for life to turn out the way it does. This August Bill and Judy will celebrate their 49th anniversary, and that fact is clear evidence that the events leading up to that special day when they met in 1964 happened just the way they were supposed to.
One year and ten days after they were married, mother nature and the lack of technology at that time (such as ultrasound) conspired to keep it a secret up until five hours before delivery that their firstborn child would actually turn out to be identical twin boys. With no time to inform friends about this surprise, Bill and Judy would invite them to see the new “baby.” After bringing just one of the twins out, they would then invite their friends to “come see what we got for him to play with” and take them to the bedroom to introduce his twin brother. The next ten years welcomed two more boys to their house, but Judy still longed for a girl.
And so, here it begins--an incredible chapter in the Bill and Judy story. I can only hope that I give it the respect that it deserves. I will use direct quotes from Bill in certain places.
Bill and Judy ventured into the world of foster care. Their first was a beautiful two-year-old baby girl with fetal alcohol effect, a condition that made her adoptable. And so it was, Judy got her baby girl. But it didn’t stop there. It turns out, they were only getting started. Next came a two-month-old baby boy who came to them after abuse had left him with leg and rib fractures and a head trauma that required a shunt. They cared for him for a year, and then, in Bill’s words “he died in our arms from a shunt malfunction at 14 months.” Incredibly, within days of his death, his twin sisters were born. After nine months in Bill and Judy’s care, the girls were adopted by a wonderful New Harmony family. Unfortunately, happy adoption stories like this weren’t the norm. Several of the children ended up back with Bill and Judy. “We had more babies die in our arms than were adopted by good families.” Their house was transformed into a medically-fragile foster care home, filled with shunts, IV lines, wheelchairs, and hospital cribs, etc. Thirty more children would come through their home. In all they did adopt five, two of whom died at age six.
Bill and Judy, your actions speak louder than any words could possibly say.
Bill pursued a career in the electrical field which meant continuous schooling and updating his credentials. After four years of electrical school, he later went back for a Master’s degree. He was employed by an electrical company and was in charge of operations building and remodeling casinos, such as Circus Circus, Caesar’s Palace, Mandalay Bay and Luxor, just to name a few. Bill and Judy have loved travel, particularly tomajor cities like New York, Boston and Chicago. Bill also remembers with fondness family hunting and fishing trips. Now they frequently take back country trips in their Razor.
Like so many of us, Bill started experiencing Parkinson’s symptoms long before any diagnosis. Falling, trouble standing from a seated position, confusion, paranoia, and hallucinations led Bill to his primary care doctor who referred him to a hearing and balance specialist who sent him to an ENT doctor, then to therapy. Subsequently, a fall and brain bleed landed Bill back in the PCP’s office who then referred him to a neurologist. My guess is Bill may be one of the few, if not the only member of our group who was relieved to ultimately receive a diagnosis of Parkinson’s disease. That’s because his first diagnosis was nothing short of devastating…Progressive Supranuclear Palsy (PSP). This Parkinson’s Plus disease is a grim diagnosis with probability of severe disability and a notably shortened lifespan. Upon hearing the original diagnosis, Bill’s sons were soon to show up with a variety of adaptive medical devices, such as a motorized wheelchair, folding wheelchair, gait belts, etc. They began plans to make necessary modifications to their home. As it turns out, the diagnosis of Parkinson’s disease has put those plans on hold and the wheelchair sits idle. But, what next?
Bill and Judy learned about our boxing therapy program from Tyler Brinkerhoff. In Bill’s own words, “Little did we know that when we walked in to that gym and I put my boxing gloves on that miracles would happen. I no longer fall on the floor and have to scoot to get up. I am stronger, my thoughts are clearer, my movements have improved, and I stand tall and walk quicker without worry that I will fall. It has become a life changer and I am surrounded by wonderful motivating people. Thank you.”
For proving that actions do indeed speak louder than words, Bill, you are ROCK STEADY.
When the SWPDFIT spotlight shines on this person an even brighter light comes shining back. She rarely misses a workout and when she's absent, things just aren't quite the same. Dee also has the distinction of being the first woman to put on boxing gloves as a member of our fitness group. She is Rock Steady, and that rock must be a diamond because of its toughness and its brilliant light.
Born into a farming family in Burley Idaho, Dee had three sisters and one brother. For those of you who were at the gym Wednesday, we had the pleasure of meeting one of Dee's sisters (14 years younger) who, like Dee, has had her struggles with Parkinson's. There's an old saying: "you can take the kid out of the country but you can't take the country out of the kid." While it is true that most farm kids yearn to return to the farm life, this was not not true of Dee. Shortly after high school graduation in Burley, she moved to Salt Lake City and took up employment for Huish Distributing Company. Salt Lake was also where she met her future husband, Murlan.
It was a Halloween Dance at the Terrace Ballroom where Dee, dressed as a *beatnik met Murlan who was not in a costume. However, when asked, he said he was dressed as Linus (Peanuts cartoon) but, unfortunately, he left his blanket in the car. One of the negotiated terms of their courtship was that Dee would make Murlan lunch and he, in turn, would drive her to work. That must have been a pretty good deal because to this day, 50 plus years of marriage later Murlan still drives her every day, but now it’s to the gym. They were married in 1963 and in 1970, they moved with three of their children to Cedar City where their fourth child was born. In their years in Cedar City they have made many cherished, lasting friendships that flourish to this day.
While Murlan was working as a general contractor and realtor, Dee was busy with their family. When their last child was old enough, she returned to the workforce for several years at Hunter Cowan and later with Murlan remodeling and constructing restaurants for her brother-in-law.
After only a few minutes with Dee, you know she has not been one to let life pass her by. She has played softball, bowled in a league and golfed as a member of the Cedar Ladies Golf Association. If you catch her out of the corner of your eye at workouts, you'll almost always see her doing a little dance or whispering the words to a tune. This has made her a favorite with the RHS student volunteers. She has both square and round danced and, in fact, became a square dance caller. She was still square dancing when she received her diagnosis of Parkinson's disease. Only last week, Dee thought she might take on the nickname of the "boxing dancer," or was it "dancing boxer?"
Together Dee and Murlan have worked at the Baptismal font at the St. George Temple and the Bishops storehouse in Cedar City. She, herself, was a leader in young women and directed music in RS and Sacrament meeting among her many music positions. She loved to sing and direct, however, Parkinson's disrupted her hand movements to the extent that she had to be released from her church position as courister director.
Sometimes we can't remember what we did last week but remember very clearly when a life changing event occurs. Parkinson's disease visited itself upon Dee's active life August 5, 2015. Her earliest symptoms included a shrinking in her handwriting and necessary hand movements for one of her favorite past times, golf.
Dee's indomitable spirit perseveres. She is one of the most frequent participants in both the Rock Steady Boxing with Jens and the LSVT, stretch and balance with Tyler. If you ask both of them for a short list of the most improved participants, the Dee's name will always appear.
Hats off to Dee and thanks for your contribution to the great atmosphere at the gym.
*For those who don't know Beatnik (Dee's Halloween costume) represents the popular Beat Generation of the late 1950's and early 1960's. This was the pre-hippie era. The first well-known Beatnik in entertainment was Maynard G. Krebs on the Dobie Gillis Show which aired 1958-1963.
I suspect many of us have heard about persons with Parkinson's performing outside the limitations the disease has placed on them. Some unknown stimulus or challenge transports us temporarily into the "zone" where for a time our body and our mind are liberated from PD and we enjoy a snapshot of normal, even extraordinary response to the task at hand. Let's back up to Monday, December 18.
I was talking to Bill, John and Scott at the gym with my back to the heavy bags. Suddenly, I realized that all three of them weren't looking at me but past me, over my shoulder. Scott's mouth dropped open a little until I finally turned around and looked behind me to see Gordon, his back straight and his head up, literally pummeling the heavy bag. His ready smile not totally erased by the task at hand, Gordon delivered a firm message to Parkinson's. GORDON IS THE STORM.
The eldest son of a military man, Gordon was born and raised in Mount Pleasant, Utah. He grew up taking much responsibility for his parent's family of five children while his father was serving his country during World War II and Korea.
Gordon and Beverly (one of our coach's "cornermen") were honored by their family this September at the celebration of 60 years of marriage. It was she who in high school initiated the relationship, which has seen 5 children, 22 grandchildren and 12 great-grandchildren, by inviting Gordon to a girls’ day dance. There's something about Gordon that you can just sense right off--he is devoted to his family and is great with children. Apparently, this is not without its drawbacks. According to Beverly, the masked facial expression that occasionally visits those of us with PD had visited itself upon Gordon at a family gathering. At some point, the grandchildren and great-grandchildren became concerned that he was no longer among the living. As for me, in Gordon I see a man full of life indeed, a gentleman with honest eyes and a broad smile that have a way of letting you know that even after the scars and bruises twenty years of battling Parkinson's can bring, he still has a lot of fight left...he won't give up.
An active leader and talented musician throughout his school years, the trumpet was the instrument Gordon and Beverly had in common. He played in three dance bands in the 1950's as well as the more solemn occasions such as military funerals and Memorial Day services.
Following the family tradition, Gordon was seventeen when he enlisted in the Utah National Guard where he served for eight years. Many of us will never forget the Cuban missile crisis as the closest this country has ever come to nuclear war. It was then, during his last year of active duty, that Gordon's unit was activated in 1961-62.
Many young men who grow up with a love of the outdoors, hunting and fishing seek their life's work in an occupation that will keep them close to nature. After graduating from Snow College and Utah State University, studying in the field of Natural Resource Management, as well as the University of Montana School of Administrative Leadership, Gordon made a successful career working for the United States Department of the Interior - Bureau of Land Management. Gordon was highly respected for his work as Area Manager for the Cedar City and Escalante Resource Area and in 1974 was selected to attend the USDI Managerial Training Program in Washington D.C. where he worked in the Legislation and Registration office. He served as district manager in Baker Oregon and Cedar City, as well as Chief of Resources in the Oregon-Washington offices. In 1988, he received the US Department of the Interior Meritorious Achievement Award. Gordon retired from 37 years of Federal employment in 1995.
In addition to academic training in his chosen field, Gordon was also a graduate of the Snow College and Utah State University LDS Institutes of Religion. He and his wife, Beverly, served missions for the Church of Jesus Christ of Latter-Day Saints in the Russia Moscow Mission, Hawaii, Honolulu Mission, New York Rochester Mission, at the Hill Cumorah Historic Sites, the Ohio Cleveland Mission, Kirtland Historic Sites, and the California Fresno Mission.
At the heavy bag and in life, Gordon will never surrender, never give up!
It is a privilege to have him as a part of our community of PD warriors.
We are often told that Parkinson's is more a matter of muscle control than a matter of muscle strength. Furthermore, physical fitness experts are adopting a new paradigm that true fitness is a reflection of what we can do with our own body weight versus what we can do against an object. For example, push-ups (using one's own body weight for resistance) uses most of the same muscles as bench presses using barbells (an object). However, one's performance doing push-ups is considered a more consistent and reliable standard of actual fitness. Today's swpdfit spotlight shines on a PD warrior who is an example of this new way of thinking about fitness. Lean and wiry, SCOTT is pound-for-pound one of the fittest members of our program. Want proof? Just watch when he does push-ups, the plank or squats during our workouts at the gym
Having been born into a home with enough love and caring for a large family, circumstances were such that Scott was destined to be raised an only child. He's quick to add, however, that in no way was he spoiled. Following his upbringing in Blanding, Utah (about 70 miles from Four Corners National Monument), he set his sights on a career in the health care field. After earning an Associate’s degree as a Registered Nurse from Weber State and a Bachelor’s degree in Nursing from the University of Utah, Scott achieved his Master’s degree in Nursing from Gonzaga University commensurate with becoming a Board Certified Family Care Nurse Practitioner*.
Sometimes referred to as "the Doc" by patients, Scott, Pam, his loving wife of 28 years, and their children, Jessica and Jeff, moved to Cedar City 18 years ago in order for him to pursue his career. It was here that he diligently and compassionately administered medical care to the Paiute Tribe, Color Country Pediatrics, and Cedar Valley Medical Clinic. Scott received a diagnosis of Parkinson's disease eight years ago at the age of 47 which qualifies as "young-onset PD."
IN SCOTT'S OWN WORDS:
"I was symptomatic about four years before the neurologist made the official diagnosis. You would think that with all my medical training I would have thought something was wrong--I just thought I was out of shape and needed to exercise. Following the diagnosis of PD, I was able to work full time for a few years, but as time went on, I had to keep cutting back and decreasing my hours. Two years ago it was obvious that the PD was progressing and I was experiencing some cognitive changes, so my neurologist and I decided that it was time and it would be best for my health to medically retire."
Proof that there can be life after a PD diagnosis, Scott's hobbies include camping, hiking, fishing and spending time with the family. He has been blessed with two grandchildren about whom he says "they are the light of my life and keep me going!"
ABOUT ROCK STEADY BOXING, SCOTT STATES::
"I have been so impressed with the Rock Steady Boxing program and in two months have noticed a significant improvement in the PD. I am so grateful for all of those involved in getting this program available in Cedar City. It gives me a way to "fight back" against PD and develop friendships with my fellow warriors. We have to keep fighting and not let Parkinson's try to control each one of us. Keep FIGHTING and stay strong."
Scott is one of our most consistent boxing members. When he comes to the gym, not only does he come ready to work, he comes prepared to encourage the rest of us.
SCOTT, you are ROCK STEADY.
*A Board Certified Family Care Nurse Practitioner is recognized in the state of Utah as a primary care practitioner.
Karen Ganss, Assistant Director of the Utah Center for Rural Health, with her nominee, Tyler Brinkerhoff.
Tyler was named the Cedar City Chamber of Commerce recipient of the Medical Professional of the Year Award, January 18, 2018.
In addition to his busy practice as a physical therapist, Tyler has dedicated himself to a nearly impossible schedule of activities serving the health care needs in our service area. Those of us who belong to the Southwest Parkinson's Fitness Alliance know him as the supervisor/instructor for our Tuesday and Thursday sessions focused on flexibility and balance inspired by the LSVT BIG program for which he is certified.
Thank you, Tyler! We really appreciate all you do for us and
Southwest Parkinsons Fitness Alliance.
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