“I have everything I want – except a cure.”
Sounds simple. Except there is no cure.
Richard Razumny, his wife Leah Devereaux, and their toddler son moved from Saugus to Bedford in November 2018. Three months later, the 29-year-old was diagnosed with amyotrophic lateral sclerosis (ALS), the neurodegenerative illness also known as Lou Gehrig’s Disease.
In a conversation this week, Razumny didn’t complain, or whine, or ask, “Why me?” He reflected, “You can drive yourself crazy, you can very easily get yourself worked up if you start thinking about the what-ifs. So I try to be present, in the moment.”
Devereaux said her husband actually began to show symptoms in September 2017. “He had developed a limp that was continuing to worsen, even with physical therapy,” she related. In early 2018, he found that his left hand was too weak to unclip his son’s highchair.
The couple began their search for answers with a physical therapist, then an orthopedist, followed by a neurosurgeon. “Next we saw our first neurologist, and then a second neurologist and finally a third neurologist, who gave us the diagnosis,” Leah said. Meanwhile, the family moved to Bedford.
Razumny said he has been working from home since April 2019. He directs a team of engineers for Acquia, an international company with an office in downtown Boston.
A former active cyclist, Razumny said, “I did a 180 after I was diagnosed.” For example: “I can’t run. I can’t climb stairs without a handrail. I can’t walk on uneven surfaces. I can’t lift up my kids. If I fall down, I need someone to help me up. I have enough gross motor skills that I’m able to drive, but if I drive somewhere I can’t open the door of where I’m going. I can still type but I can’t cut me fingernails. It all takes a lot of energy.”
“There has been a slow but steady disease progression,” Devereaux said. “What at first was only left-sided weakness has now traveled to the right. His balance is greatly affected. With this disease, sometimes the progression is slow, then a week goes by and it changes. So it’s hard to think about the future.”
Their daughter was born a year and a half ago; her brother is now three. “I can still interact with them, but not in the ways I envisioned.” Razumny’s son is too young to remember when they would go hiking, or visiting the Shawsheen River in their back yard. “We have to be cognizant about ho we explain ALS,” said Devereaux.
The couple grew up in Saugus and are both graduates of Northeast Regional Vocational School in Wakefield, though they were two years apart and didn’t know each other there. They moved to Bedford “because of the school system, more than anything,” Razumny said.
Devereaux pointed out that when ALS is diagnosed, patients are usually between the ages of 40 and 60. Her husband said subsequent life expectancy is three to five years.
“ALS is a disease that affects the brain’s ability to send signals to muscles in the body, including those of the limbs and organs, specifically the diaphragm and lungs,” she continued. “There is no known cause for the disease, aside from 10 percent of cases that can be traced to familial genes. There are only two FDA approved medications to help in slowing progression, but there is no treatment or cure.” Razumny said his case is not genetic.
They’re trying everything. A shock-wave therapy, still in a discovery phase, designed to “manage muscle spasticity.” Radicava, an FDA-approved product taken intravenously 90 minutes a day for two weeks, followed by two weeks off. weeks off.
Razumny sees a neurologist at Massachusetts General Hospital. “They try things to accommodate you, they try things to make you comfortable.” He is no longer eligible for any clinical trials of experimental drugs because the cutoff from the onset of symptoms is three years. Anyway, they didn’t want to be the family on the placebo.
They were informed several weeks ago of “platform trials” of various therapies. But the couple decided to forego trips to MGH at the height of the pandemic. “They don’t make it easy to participate, and there’s no record of success,” Devereaux lamented.
“We’re trying to read about documented reversals,” she said, adding, “We have our own network of alternate doctors and integrative medicines.”
Meanwhile, the ranch house is being renovated to accommodate Razumny’s new power wheelchair. The family has moved into the accessory apartment.
“All of our doorways need to be widened, an accessible bathroom needs to be created and our kitchen needs some changes to allow for moveability and safety. We will need a handicap ramp to our front door, along with a flattened parking space beside it for easy transfers into an accessible van, another purchase we need to plan,” Devereaux enumerated.
“The cost is a daunting number, but I realize these changes are necessary for preserving the dignity and quality of life of everyone in our home,” she continued. “Rich’s having more independence will lift the burden off of my shoulders as his primary caregiver and allow him to participate in the care of our children, which is my biggest motivation for this work.”
Devereaux said contractor Greg Antonioli from Out of the Woods Construction of Waltham “is reaching out to his networks in the hopes of having construction materials donated, as well as skilled laborers to donate their time toward the projects.” The family is also in touch with Scout Troop 191 about the possibility of handling some landscaping. Razumny was an Eagle Scout.
Devereaux, a registered nurse who works with young children who have medical and developmental challenges, said she has been dealing with a lot: “Concern over the pandemic, adjusting to work via telehealth, driving to three or four medical appointments per week (much of which is not covered by insurance), on top of parenting our two children has been curveball upon curveball.”
She lauded the Bedford Family Connection for providing emotional and financial support. The family joined in 2018, soon after they arrived. Last month the group raised money with a cooking class on Zoom, including donated raffle prizes sprinkled throughout the event.
“I realize that all of what we are going through is much bigger than what my family can offer and that we need a community that circles far beyond our own family and friends,” she commented, acknowledging the challenges Covid-19 poses in connecting. She would like to see a safe way to cross Route 62 over to Hemlock Lane.
Razumny recalled ruefully that several years ago he accepted the “Ice Bucket Challenge,” the wildly successful fundraising and consciousness-raising experience to benefit ALS research, launched by Peter Frates and Pat Quinn, two young victims, in 2014.
Now, he said, “I’m doing anything and everything I can.”
Mike Rosenberg can be reached at [email protected], or 781-983-1763
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Great article about such a debilitating illness and the fortitude it brings forth from those afflicted.
I was so grateful to see Mike Rosenberg’s article on ALS. We are all in the fight together. My only Mother became an ALS patient and we all support the efforts taken to find the cure. Thanks for ALS ONE, Peter Frates and Pat Quinn, Compassionate Care ALS a great resource headed by Ron Hoffman in Falmouth. We fight on together.
Ron Hoffman and CCALS are just so amazing!