Living while dying, one day at a time
Ryan Summerlin July 23, 2013
For more information
The Multiple System Atrophy Coalition: www.multiple-system-atrophy.org, 1-866-737-5999
Shy-Drager/Multiple System Atrophy Support Group, Inc.: www.shy-drager.org, 1-866-737-5999
Familial Dysautonomia Hope Foundation, Inc.: www.fdhope.org, 919-969-1414
National Dysautonomia Research Foundation: www.ndrf.org, 651-267-0525
Words trap in his mouth, lips twisted in concentration, emerging slowly as the good doctor concentrates on selecting and pronouncing what tumbles effortlessly forth for most: speech.
He suffers from Multiple System Atrophy, a progressive neurodegenerative disorder characterized by symptoms of autonomic nervous system failure, such as fainting spells and bladder control problems, combined with motor control symptoms such as tremor, rigidity, and loss of muscle coordination, according to the National Institute of Neurological Disorders and Stroke.
Simply put, automatic functions like breathing, continence, and heartbeat stop. The disease advances rapidly over a nine- to 10-year course, with progressive loss of motor skills, eventual confinement to bed — and death.
There is no cure. No hope.
Dr. Brooks Bloomfield, a Truckee veterinarian, lives while dying one day at a time.
“I wouldn’t wish this death on my worst enemy,” said Brooks, during an al fresco café conversation at Coffeebar in Truckee.
Brooks and his wife, Jennifer Bloomfield, seated themselves one early afternoon as spring sun poured forth and lively chatter and cappuccino aroma filled the air. A dog pulled its person on the leash, intent on greeting Brooks with a wag and a wiggle.
The meeting had to be in the afternoon.
Brooks lies on the couch immobile most mornings, unable to move, eyes open and his brain aware.
“The dogs love it,” joked Jennifer.
Their love is palpable: Jennifer, an elfin figure of reddish hair, petite tipped nose and dimples, who sported fish-head tennie runners and Brooks, who looks at Jen with a wide smile and twinkle in his eyes.
Observing them, adoring each other, you’d think life was good.
LIFE IS GOOD?
Brooks is a well-educated man. He graduated with a Bachelor’s of Science from University of New Hampshire in 1976, a doctoral of veterinary medicine from Tufts University School of Veterinary Medicine in 1983, and Residency in Zoological and Wildlife Medicine and Surgery from University of California, Davis, in 1994. He is the man who refused to grow up, who still doesn’t eat broccoli, and just wants to play.
Imagine not being able to ski, mow the lawn or having to concentrate to speak, gargle or spit.
“We want to make people aware there are a bunch of rare diseases out there,” said Brooks.
He will be cognizant, aware of the feeding tube, the inevitable colostomy bag as he dies.
Brooks noted with a laugh the irony of having a urologist appointment to discuss a permanent catheter on April Fool’s Day.
A LONG AND PAINFUL PATH
MSA has a very simple path with no remission.
Brooks seemed a bit grumpy and irritable eight years ago. His wife was alarmed when he almost drowned, upside down and breathing water in a pool. Or the time, feeling fit as a fiddle, working out at a lean 145 pounds on a treadmill, Brooks fell to the ground, his body frozen, anger and rage in his mind: He couldn’t make his arms or legs move.
According to Multiple System Atrophy Coalition’s Co-President Judy Biedenharn, whose husband died of MSA 10 years ago, symptoms are shifty, not the same for each patient, like a bowl of Neopolitan ice cream. You never know what you’re going to get.
And so began the prodding, the poking, the excruciating tests.
At the Mayo Clinic, Brooks spent 10 days being examined from one end to the other. Doctors concluded, “There is no possible organic cause for your symptoms.”
At Stanford, a doctor told Brooks if he’d just stay off the Internet (and imaging his illness), he’d be able to walk his daughter down the aisle.
His daughter, 16, returned from a Rotary Youth Exchange program in Spain last school year to be with her father, who may hold on a few more years — Brooks hopes for at least four more — or die in his sleep tonight.
“A lot of people with neurological issues are treated poorly by neurologists — they think you’re crazy,” said Jennifer. “Never in my wildest dreams did I think it would be terminal.”
‘GUILT IS THE WORST PART’
Brooks, who hails from a line of doctors, his grandfather the head of neurology at University of Pennsylvania, said to trust yourself during diagnosis, and advocate on your own behalf. He finds the process intellectually fascinating, however devastating.
His final and correct diagnosis came from University of California, Davis.
“Guilt is the worst part,” said Brooks, about the thought of leaving his wife, with whom he built a state-of-the-art veterinarian office, the Doctor’s Office for Pets in Truckee. About his staff and the doctors there, about the animals who need care.
In June 2006, the couple designed the office at 10939 Industrial Way to be handicap-accessible. Mark Wellman, famed paralympic athlete, tested the hall’s width in his wheel chair.
The office houses the latest in digital technology, full-spectrum lighting, a painting by an elephant and a curtain designed by staff to cover the hordes of cords that juice the veterinarian software Brooks installed.
“We have the best clients, the best staff,” said Brooks.
The Bloomfields deal with the progressing disease with humor, grace and faith.
Brooks, a spiritual man and previously master at the Masonic Lodge in Truckee, often prefers animals to people. They have no politics or religion. He feels neither his clients nor the animals he treats should be subject to his beliefs.
He aims for whatever brings betterment and health to his patients and the community.
“One of the wonderful things (about the community) is that everyone prays and shares,” Jennifer said.
“The only reason I keep going is for the animals and the people of this community,” Brooks added. “We do this out of the greatness of our hearts.”
He likens his practice to a country doctor, keeping costs down while providing excellent care.
Even to very, very big cats.
WATER IN THE DESERT
Dr. Bloomfield was once called to the Nevada desert to treat a cat. A privately owned 600-pound tiger, to be exact. Before he examined the feline, he had to evaluate the surrounding environment for safety, estimate the sedative dosage and shoot the feline with a tranquilizer dart. Brooks hit his mark, and the startled cat jumped in to a giant bowl of water.
Brooks had eight seconds to react before the sedative worked. Think. Fast. Being liable for a large drowned tiger was not on his agenda.
Dr. Brooks loaded a second dart, took aim, and hit the tiger in the right shoulder, stinging it just enough to startle it for a last jump out of the pool.
“Boy, I’ll tell you, he could have responded differently,” Brooks recalled.
RESPONDING TO THE CALL
Dr. Bloomfield hopes for a response to fund research and generate awareness of MSA. At this time, there is no clinical diagnosis, although MSA presents similarly to Multiple Sclerosis and Parkinson’s Disease. About 15,000 people are diagnosed with MSA, with an estimated 35,000 undiagnosed individuals.
Jennifer wears a “bracelet made from the heart,” designed by Kym Crowe, whose mother, Connie Lopez, died from MSA November 2012. Crowe designs and sells the bracelets to raise money for MSA.
The Bloomfields’ daughter joined a Facebook page for children of MSA sufferers.
As MSA slowly sweeps Brooks down an inexorable path to incapacitation and death, there are groups working feverishly for the cause.
The Multiple System Atrophy Coalition held a letter-writing campaign in March to both houses of Congress and the President of the United States to fight for better funding of the National Institute of Health in support of rare disease research; recognize March as Multiple System Atrophy Awareness Month and Oct. 3 as World MSA Day; and urge the FDA to more efficiently approve orphan drugs.
MSA Coalition’s Biedenharn noted the FDA did not approve a potentially helpful drug in stablizing blood pressure, due to the fact there was no long-term study. An insurmountable task, since MSA patients don’t live long enough for long-term studies. A new MSA Coalition grant award program, overseen by a panel of neurologists, is in the works.
Beidenharn cared for her husband, a devastating task. She described the process as a reversal of bringing a newborn baby home, watching instead of growth the debilitating loss of walking, swallowing, breathing. He was housebound seven years and bedridden for three, all the while his brain still functioned — until his death.
To make a donation, start a fundraiser or learn more about MSA, contact the MSA Coalition at 866-737-5999 or visit www.multiple-system-atrophy.org.
The Rare Disease Legislative Advocates, a collaborative organization to support the advocacy of all rare disease groups, has a letter template link at www.congressweb.com/KAKI/20.
Brooks thought perhaps in addition to research and funding, there could be a discount club, like cheap tickets for the terminally ill.
The Doctor’s Office for Pets is open and operating, with a top-notch staff, state-of-the-art equipment, and kind and caring veterinarians. Hours of operation are Monday through Friday, 8 a.m.-5 p.m. Click here or call 530-587-5144. The Doctor’s Office for Pets serves dogs, cats, reptiles, small mammals and wildlife.