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A symphony of support to defeat ALS

Three years ago, Dr. Karen Basin retired from her busy Medford practice where she had treated patients with chronic arthritic and autoimmune diseases for more than 24 years. She was 55 years old and in good health. She planned to devote the second half of her life to her two passions — outdoor sports and music.

“I was always very athletic, bicycling at least 2,000 miles a year for nearly 20 years, skiing regularly at Mount Ashland, and hiking in the local mountains,” Basin wrote in a letter to the Mail Tribune. “My vacations were usually spent either on a bicycle tour, at a music workshop, or at a rheumatology conference in Snowmass, Colorado, where I would ski with friends.”

For more than two decades, Basin had a parallel career playing bassoon in the Rogue Valley Symphony Orchestra, Ashland City Band, and Jefferson Baroque Orchestra. She became RVSO’s principal bassoonist in 2013.

When she retired, she intended to pursue music full-time. She also planned to continue to share her love of the bassoon with students at Ashland Middle School and Ashland High School.

“I had a blast and I envisioned doing this for at least another 20 years,” she said.

Basin’s retirement plans abruptly came to a halt, and her musical career was cut short when she was diagnosed with Amyotrophic Lateral Sclerosis in 2017.

ALS, often referred to as Lou Gehrig’s disease, is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of a person with ALS averages two to five years from the time of diagnosis.

On Sunday, Oct. 7, RVSO musicians will join Basin in the Walk to Defeat ALS. The event, which begins at 11 a.m. at Hawthorne Park, is a fundraiser and part of a campaign to raise awareness of the urgency to find a cure for a disease that has no known cause.

No longer able to walk unassisted, Basin said she will use a motorized wheelchair to complete the 3-mile circuit in downtown Medford.

RVSO oboist Kristin Kessler has performed with Basin for several years. The two also play in the Jefferson Baroque Orchestra and a woodwind quartet.

“She’s held in high regard. She has always performed at the highest level of professionalism in her medical practice and as a musician,” Kessler said.

“She loved medicine, but gave it up for her love of music,” she said. “That makes her a special musician.”

She added that, “sadly,” Basin is unable to perform any longer. The bassoon requires finger dexterity, and as a woodwind, “lung capacity, she added.

Every 90 minutes a person in this country is diagnosed with ALS, and every 90 minutes another person will lose their battle against the disease.

ALS usually strikes people between the ages of 40 and 70, and it is estimated there are roughly 20,000 to 30,000 Americans who have the disease.

There are approximately 35 to 40 people living with ALS in Southern Oregon and Siskiyou County.

“It costs loved ones an average of $250,000 a year to provide the care people living with ALS and their families need,” said Basin. “Fundraising efforts are essential to support ALS research and organizations such as the ALS Association that provide support for those living with ALS.”

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Specifically, the motor neurons are affected. Because motor neuron loss is progressive, people with this disease may lose the ability to speak, eat, move and breathe.

Late in 2016, Basin started noticing increasingly frequent muscle cramps, initially in the legs, but also in strange places such as the upper abdomen. By spring of 2017, she noticed difficulty walking, and the left foot began to drop. Very shortly thereafter, the right foot also became involved, and later her hands.

When things got worse rather than better with the ankles, she saw an orthopedist and then a physical medicine specialist and finally a neurologist specializing in neuromuscular disorders. Further tests including electromyography (also known as EMG, a test measuring electrical conduction within muscles) confirmed her suspicions — she had ALS.

Basin was able to play with RVSO for a full season following her diagnosis. Conductor Martin Majkut, the staff, and all her colleagues were extremely supportive, she said.

“Playing bassoon as long as possible was number one on my bucket list, and my friends did what they could to keep me playing,” she said. “Losing the bassoon has been a huge emotional hit for me.”

Basin was a musical prodigy. She started playing the cello at age 7, and by age 14 discovered an affinity for the bassoon.

“I love voices in the baritone and tenor ranges, and I fell in love with the sound quality of the bassoon after hearing it on a record featuring instruments of the orchestra,” she recalled. “Along with its cousin the oboe, the bassoon is a double reed woodwind instrument, and it has a beautiful, haunting tone quality.”

Basin played in symphony orchestras while in high school, college and medical school before moving to the Rogue Valley in 1991. She said that one of the draws to the Rogue Valley was the opportunity to play with RVSO.

“I was fortunate that they were looking for a bassoonist when I moved here,” she said.

Basin is planning one last performance with the Jefferson Baroque Orchestra at an afternoon concert in Ashland. On the same day as the ALS walk, she is preparing a “simple” 20-note sequence to play on her baroque bassoon.

Basin has started writing a book on living with ALS.

“People often ask me what it feels like to be a physician living with this disease. It’s really ironic because in my career I dealt with people who had chronic disabling disorders such as rheumatoid arthritis. I definitely have a better appreciation for what they go through,” she writes.

“Everyone goes through stages of grieving, including denial, anger, bargaining, sadness and acceptance. I’ve learned that these stages don’t necessarily occur in an orderly sequence. For me, they tend to go back and forth. I’m definitely on an emotional roller coaster. I find I can be pretty depressed one day and feel more positive the next. I can vacillate between anger and mourning for my previous life and then the next day I’ll be thinking of things I can do to stay active and engaged. I’m sure anyone with a chronic illness experiences some variation of this. The important thing is not to let oneself get stuck in anger and bitterness.”

Some people living with ALS (known as “PALS”) progress very rapidly through the disease and are gone in less than a year. Twenty percent survive more than five years and 10 percent survive more than 10 years.

Stephen Hawking was an exception, having survived more than 50 years with the disease, said Basin.

Death usually results from weakness of respiratory muscles leading to inability to breathe. Occasionally, PALS will die of head trauma from falling, blood clots from immobility, or infections related to immobility or difficulty breathing. Many PALS become paralyzed if they don’t die beforehand.

“Being a physician perhaps gives me more insight into the disease process and also into potential end-of-life issues. I’m grateful I can talk openly about these issues with my family in advance of a crisis. I’m also fortunate in that my spouse happens to be a retired nurse.”

No cure is available for ALS but there are a couple medications that may slow the disease progression somewhat, she said.

Riluzole has been the standard since the 1990s, and Edaravone intravenous infusions became available in 2017. Most current research is aimed at developing neuroprotective agents, including a stem cell procedure where protective factors grown from a patient’s bone marrow are transplanted back into their spinal fluid.

“However, none of these therapies represent a true cure,” said Basin.

In the absence of an effective cure, technology is available to help PALS cope with their functional losses. Examples include motorized wheelchairs to compensate for inability to ambulate and to prevent falling, feeding tube placement in the stomach for when there is difficulty swallowing, noninvasive ventilation (such as BiPAP, a machine that reduces work of breathing by assisting with both inhalation and exhalation), and speech-generating devices for when verbal communication becomes difficult.

“All these adaptations help improve quality of life and may even extend life for people living with this disease, but they do not stop disease progression,” Basin writes.

“It’s hard letting go of previous goals which are no longer realistic,” she added. “Instead, I have to set short-term goals, live in the moment, and appreciate what I still have. With ALS, one has to hope for the best and prepare for the worst. Today is all any of us really have.”

For more information, see www.alsa-or.org.

Reach Grants Pass freelance writer Tammy Asnicar at tammyasnicar@q.com.

Dr. Karen Basin