Tony Ferro says he should be in a wheelchair.
He worked in the family pizza business after knee and ankle injuries and several concussions, derailed a prospective football career while he was in prep school.
He added more than 100 pounds to his already large frame afterward.
His health began to fail a decade ago and he was diagnosed with multiple sclerosis in 2012.
Ferro could have taken the more-traveled road to MS treatment and counted on medication as the main force to try to keep the debilitating neurological condition in check. Instead he chose another path. He completely remade his wellness regimen.
"A doctor can only lead you so far unless you're your own advocate," said the 39-year-old founder of the Change MS Wellness Foundation.
During the last six years, Ferro has sworn off pasta, pizza and other processed foods. Water became his beverage of choice. His diet got heavy on berries and veggies. He meditates, and is toying with the idea of starting yoga.
He has lost 120 pounds.
"Everybody tells me, I don't know why you're doing so well but keep doing what you're doing," Ferro said. "If I can do it, anybody can."
Dr. Bianca Weinstock-Guttman, a leading Buffalo-based neurologist, agreed.
"I really think that diet and exercise is very important," she said. "I absolutely think that medication alone is not sufficient but is an add-on. To have full, 100-percent control, you have to have both."
The immune system attacks the central nervous system – the brain, spinal cord and optic nerves – to forge multiple sclerosis, a disease yet to be cured. It can be mild, moderate or severe, often depending on where in the body the attack is centered.
Symptoms can include fatigue, numbness or tingling, walking or vision problems, pain and brain fog.
The condition can be hard to diagnose because its symptoms are common for autoimmune diseases. Tests to find it can get complicated. Depression can challenge those under its grip.
Ferro began experiencing symptoms a decade ago, while in his late 20s.
"By the time I went to the doctor, I was severely numb from the neck down," he said. "It was hard to walk because I couldn't feel my feet on the ground. I didn't have full use of my right hand. I couldn't put socks on, grab a glass, shake your hand. My depth perception was off. My balance was off."
During those years, Ferro helped manage the family business, Gino & Joe's New York Pizzeria in the Main Place Mall. He described his diet during those years as "all grab and go."
"You work 10, 12 hours a day. You're busy. You don't drink water. You grab, you pick, never thinking about what you put in your body."
The 6-foot-4 strong-side tackle weighed 320 to 375 pounds during his football days. He ballooned to 498 pounds before a spinal tap confirmed his diagnosis six years ago.
Multiple sclerosis is a relapsing-remitting disease that attacks the sheaths that protect nerve fibers. Lesions result. Relapses can be acute.
"The goal is to prevent any relapse and any new lesions because we cannot get a new brain," said Weinstock-Guttman, director since 2001 of the Jacobs Multiple Sclerosis Center for Treatment and Research in Buffalo General Medical Center.
She also directs the New York State Multiple Sclerosis Consortium, which has followed about 10,000 patients from across the state for as long as 20 years in continuing efforts to learn more about the treatments and behaviors that best serve patients.
Dr. Lawrence D. Jacobs, a Buffalo neurologist who died in 2001, and his UB research team helped lead the development five years earlier of Avonex, one of the first two drugs that reduce symptoms of MS.
In the years that followed, the drugs helped about 30 percent of MS patients decrease the number of relapses, which often came once or twice a year, said Weinstock-Guttman, who replaced Jacobs in his roles.
Today, 14 oral, injectable and infused medications help treat MS. They have become twice as effective as the first-line drugs, said Weinstock-Guttman, who also is a professor of neurology at the University at Buffalo Jacobs School of Medicine and Biomedical Sciences.
"There's no question the medications are helping," she said. "You don't see our waiting room like it was years ago, full of wheelchairs."
Treatment improvements have gained steam since Ferro was diagnosed in 2012, yet he is among the rare people with MS who have decided to forgo drugs. He hated the side-effects that can include dizziness, balance issues, weakness, fatigue and flu-like symptoms he described as "the worst hangover and the flu at the same time."
Ferro chose a "mind, body and spirit" approach to better health.
"I'm a huge proponent for symptom and disease management strategies," he said. "We cannot just be sent home with a script and hope things are going to work. We have to be just as aggressive treating MS as MS can be. It is not nice. It is unpredictable. But if we can take proper steps and combat it, we'll be better off."
To be sure, the approach Ferro takes isn't for everybody.
"They call MS 'the snowflake disease.' There are not two people 100 percent alike," Ferro said. He encouraged those with symptoms or a diagnosis to work closely with a doctor to devise the best approach to treatment.
His doctors discouraged him from avoiding medication but he decided to get "extremely aggressive" with diet and exercise after watching a YouTube video about Dr. Terry Wahls – an internist and clinical professor of medicine at the University of Iowa Carver College of Medicine in Iowa City, Iowa – who talked about the steps she took to put her disease in check.
"I'll never use the words 'healed' or 'cured,' but control is possible," Ferro said. "We'll always have MS but what environment are we providing it? Are we going to allow it to thrive or can we keep it contained? If I go off of this lifestyle and go back to my old ways, I know for sure that it's going to affect me and I'll be in the infusion center."
Weinstock-Guttman said research studies during the past decade show that exercise, weight loss and cognitive behavioral therapy are vital in helping to control MS, and that patients who isolate themselves more often face setbacks. Medication helps, she said, but she expressed alarm about one continuing study that suggest too many patients prefer "to sit on the couch and take a pill."
"You have to do as much as you can to protect yourself," she said.
Ferro said there was no talk of nutrition and exercise after he was diagnosed. He was discouraged from exercising for fear he might get overheated.
"The understanding of MS has developed since," he said.
Ferro started the Change MS Wellness Foundation in 2014. He has become a certified nutritional consultant since and, with several others who have multiple sclerosis in the region, has become a saber-rattler in challenging the traditional approach to treatment.
"What's promising about MS is that the community is coming together, including neurologists," he said.
Vitamin and mineral deficiencies and heavy metal toxicity can fuel MS, Ferro said.
"Everybody's got their own co-factors that led to dysfunction and we've just got to try to put our own pieces of the puzzle together for the best health that we can," he said. "It's a pain-in-the-ass process but it works."
Ferro started looking closer into his body chemistry with lab testing that included finding out if he was vitamin-deficient. (Getting enough vitamin D is a common challenge in colder climates.) He also started eliminating certain foods from his diet to try to find out if he had any underlying food sensitivities.
Like many who successfully lose weight, he discovered that jettisoning sugar, dairy, gluten, soy and corn from his diet had a meaningful effect. He began to drink at least half his body weight in ounces of water daily. He drastically cut his alcohol consumption, vowing to have mixed drinks no more than once a month.
Ferro intermittently fasts every day, going 16 hours without food from 8 p.m. to 11 a.m.
"After that, I'll do berries," he said. "I eat lots of greens, a big variety of vegetables."
An hourlong workout with personal trainer Bret Tinder precedes the food five days a week at Catalyst Fitness in Cheektowaga.
Tinder leads Ferro through a functional exercise routine designed to foster a full range of movements that people tend to do daily at home and work. The sessions involve mostly strength training, with some cardio work – a combination designed to summon recovery hormones that help with healing and bring more resilience to the body.
Ferro needed to start slowly at the beginning, Tinder said, but like others who have become too sedentary, he progressed fairly quickly – and his persistence paid off.
"Tony is very in tune with his body and lets me know what he can handle and what he can't," his trainer said. "For the most part, he's kind of adopted the tough love approach. ... within reason."
Ferro has become a role model to others in the gym.
"I have other clients trying to follow a diet or maintain a workout regimen," Tinder said. "Tony will gladly volunteer his time to sit down and say, 'At some point, you've got to do the work.'"
Ferro leaves his workouts and heads to Hertel Avenue in North Buffalo, where he manages a liquor store, stopping beforehand at the new Lexington Food Co-op across the street.
He uses the same purchasing protocol daily at the grocery food buffet: 3 cups of greens; 3 cups of cruciferous sulfur-rich veggies that include broccoli, kale and Brussel sprouts; and lots of brightly colored real foods. He also grabs a can of full-fat coconut milk to mix with some of his produce into a smoothie.
His meals include grassfed beef, wild caught fish or free range chicken atop greens or beside steamed vegetables. He tends to snacks on pecans, Macadamia and Brazil nuts – never peanuts – and eats a half dark chocolate bar twice a week. Along with water, he drinks green tea daily.
It costs more, he said, "but sickness isn't cheap, either." Farmers' markets tend to make the bounty less expensive during the growing season.
"This isn't a radical diet," he said. "Why is it radical getting back to what the earth provides? Putting packaged, processed crap into your body should be considered radical because our bodies don't recognize it and can't digest it properly."
Ferro said the approach he's using also seems to be a common recipe to help address Type 2 diabetes and other chronic health conditions – if they are willing to do the work.
“People will tell me they’ll do anything to make this go away, anything to feel better,” he said, “then you give them four things to cut out and they’ll say, ‘I can’t do that.’ It is an intimidating transformation but we don’t have any other options. I’ve been to the bottom: depression, brain fog, fatigue. There were days I didn’t want to get out of bed. Now my energy is through the roof.”
Multiple sclerosis (MS) is a non-infectious disease in which the body’s immune system is directed against the central nervous system, attacking myelin — the fatty substance that surrounds and insulates the nerve fibers — as well as the nerve fibers themselves in the brain, spinal cord and optic nerves. The damaged myelin forms scar tissue (sclerosis), which gives the disease its name.
– There is no cure for the relapsing-remitting disease, thought to be triggered in a genetically susceptible individual by a combination of one or more environmental factors.
– It can be mild, moderate or severe.
– It is two to three times more common in women than men.
– It can be diagnosed in children as young as 5 and adults over 60, though most cases are uncovered in young adulthood and middle age. The National Multiple Sclerosis Society opened six pediatric centers a decade ago, including the one in Buffalo.
– More than 2.3 million people worldwide have the condition. The Centers for Disease Control and Prevention does not require physicians to report cases in the U.S.
– The disease tends to be more common in colder parts of the U.S., all of Canada and parts of Northern Europe. Despite a lack of published data, the Seattle and Buffalo regions are generally considered to have the greatest incidence in the U.S.
Fatigue is the most common. Symptoms also include numbness or tingling, weakness, dizziness and vertigo, sexual problems, pain, emotional changes, walking difficulty, spasticity, vision problems, bladder and bowel problems, cognitive changes and depression
Risk factors and conditions that also can accompany MS include high blood pressure, diabetes and obesity. Vitamin D deficiency, a history of mononucleosis. First- and second-hand smoking also raise the risk.
No single test can diagnose MS, though a complete medical history, lab tests and an MRI can help rule out other diseases. A spinal tap is often needed for a more definitive diagnosis.
There are four: Relapsing-Remitting MS (RRMS) is the most common; about 85 percent of people with MS are initially diagnosed with this form, which involves temporary periods called relapses, flare-ups or exacerbations, when new symptoms appear. In Secondary-Progressive MS (SPMS), symptoms worsen more steadily over time, with or without the occurrence of relapses and remissions. Most people who are diagnosed with RRMS will transition to SPMS at some point. The more rare forms are Primary-Progressive MS (PPMS), characterized by slowly worsening symptoms from the beginning, with no relapses or remissions; and Progressive-Relapsing MS (PRMS), characterized by a steadily worsening disease state from the beginning, with acute relapses but no remissions, with or without recovery.
The recommended treatment is holistic. It includes medications designed to prevent lesions in the central nervous system, as well as a healthy diet, exercise, cognitive behavioral therapy, good sleep habits and an active social life.
Sources: National Multiple Sclerosis Society, Jacobs Multiple Sclerosis Center for Treatment and Research
National Multiple Sclerosis Society Upstate Region: Provides resources, support and research funding to help those touched by MS. Upcoming fundraisers include MS walks at 10 a.m. May 5 at Canalside on the Buffalo waterfront, May 6 in Batavia and Wellsville, and May 19 in Lockport. For more info, visit nationalmssociety.org/Chapters/NYR.
Change MS Wellness Foundation: Focus is on programs, workshops, support programs and personal development information for those with MS. The regional nonprofit will host its Masquerade Gala for MS Awareness from 6 to 11 p.m. next Saturday at Salvatore's Italian Gardens. Masks aren't required but may wear them for symbolic reasons. "MS and autoimmune conditions are usually invisible to the eye; you never know who's going through what, who's wearing what mask," Executive Director Tony Ferro said. Money raised will go to program development, patient consults and wellness-related research projects. For tickets, info on monthly support group meetings and more, visit changems.org, email email@example.com or call 400-9629.
Families Touched by MS: This Depew-based, all-volunteer organization helps families cover the cost of equipment and renovations to help them maintain independent living. Their next fundraiser, Tropical Dreamin', takes place from 7 to 11 p.m. April 14 at St. Mary's Performing Arts Center, 142 Laverack Ave., Lancaster. For tickets and more info, visit familiestouchedbyms.org.
Team #MSsucks: Niagara County-based group is devoted to supporting research, awareness and, most importantly, those with MS and their families. For more info, visit teammssucks.org.
Advancing Research in Multiple Sclerosis: ARMS fosters patient-centered research that addresses unmet needs. Its first endorsed study is the MS Progression and Aging Study led by Dr. Bianca Weinstock-Guttman, director of the Jacobs Multiple Sclerosis Center for Treatment and Research. The study will look to identify how several factors – including lifestyle choices, medication, genetics and environmental factors – influence MS progression over time. For more info, visit advancing-research-in-ms.com.
RESOURCES FROM THE BUFFALO & ERIE COUNTY PUBLIC LIBRARIES
"Fighting Fatigue in Multiple Sclerosis: Practical ways to create new habits and increase your energy," Nancy Lowenstein
"The Multiple Sclerosis Manifesto: Action to take, principles to live by," Julie Stachowiak
"Multiple Sclerosis: Tips and strategies for making life easier," Shelly Peterman Schwarz
"Multiple Sclerosis: The questions you have, the answers you need," Rosalind Kalb
"Navigating Life with Multiple Sclerosis," Kathleen Costello
"Yoga and Multiple Sclerosis: A journey to health and healing," Loren Fishman
For more information, visit buffalolib.org