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.