Denise Fargino was diagnosed with multiple sclerosis three years ago, about the time her daughter Melissa started a job as a bartender at SkyBar.
"We knew for years that something was wrong," Melissa Fargino said. "She went from walking 3 ½ miles a day to barely being able to walk down her driveway and back."
The younger Fargino felt alone and disoriented by the diagnosis, until she found comfort and perspective alongside her at the bar in the form of Shannon Polvino, a fellow barkeep whose mother, Kathleen, had been diagnosed with MS two decades earlier.
"When somebody first finds out about it, it can be kind of devastating," the younger Polvino said. "I was excited to have somebody to talk about it because not many people know what MS is. Sometimes the signs aren't very visible, either, so it can be hard for people to understand the effect it can have on peoples' lives."
Multiple sclerosis attacks the central nervous system and disrupts the flow of information within the brain, and between the brain and body. It can be unpredictable, disabling. Its damage can vary from person to person, and range from mild to severe. Symptoms can include numbness or tingling in limbs, difficulty walking, muscle spasticity, vision problems, vertigo or dizziness, pain and cognitive difficulties.
Primary care doctors, neurologists and physical therapists generally make up the team of health specialists to help manage the condition. A mental health counselor and nutritionist also often are part of the mix.
Fargino, 26, of Grand Island, went on to become a high school math teacher. Polvino, 24, of Amherst, works as a public relations specialist for political consultant Michael Caputo. The two women have joined forces to organize an MS fundraiser to benefit the Change MS Wellness Foundation from 6 to 9 p.m. Aug. 19 at D'Arcy McGee's, 257 Franklin St., on the ground floor of the building where they once tended bar. Tickets cost $25 in advance by emailing MSsquad716@gmail.com or $30 at the door.
Fargino has spent the last year in South Korea with her fiancé, Matthew Major, an F16 pilot in the U.S. Air Force. She has helped plan the fundraiser while spending the summer at home with her family – and preparing for a September wedding in Western New York. Polvino is one of her bridesmaids.
Q. How does the disease affect your moms and your family life?
Polvino: The depression can get to people, not just because you have a disability. The disease causes things in your brain that can make you become depressed. My mom will have moments where she's very strong and get through the days very easily but on days where she's having a bad day with her legs, she'll be very depressed. The medicines they put you on and the research programs my mom's been through also has caused her a lot of troubles.
Fargino: It limits what my mom can do. My mom isn't able to walk in the snow very easily and, in the heat, her flare-ups occur and it makes a lot of her conditions worse. It's hard when you're in your early 50s and possibly need to be on a scooter. She gets spinal injections at least once a month.
Q. How did you find out about Change MS and what kind of work does it do?
Polvino: Tony Farro, the founder, was diagnosed with MS in 2012. He likes the holistic approach.
Fargino: The focus is on controlling the disease. There’s no cure for it but he’s really good at controlling it. He’ll do cooking classes because a lot of times, dairy can affect his symptoms and he can go from being great to terrible in a day. They also do yoga. He focuses more on educating people and more than only relying on medicine to help. He helps those with MS become their biggest advocates.
Q. What went in to the thinking for a fundraiser?
Polvino: We've wanted to do it for a while. Our old boss (GM Conor Hawkins) knows Tony Ferro and told us about him. We like that this is a local organization.
Q. What will the fundraiser be like?
Polvino: It's going to last three hours. My uncle Donald Dwyer's Irish band will play for an hour.
Fargino: Tony works with a DJ that will be there for two hours. We're doing a 50/50 and a basket raffle. A lot of local businesses have donated gift cards or baskets. We have a pair of Bills home opener tickets; when you buy your tickets for the event you're entered into a drawing for those. We're trying to keep everything as local as possible. There's going to be a food buffet and open bar.
Q. What do you wish more people understood about MS?
Polvino: For my mom, sometimes it's invisible. She's has relapsed and remitted. She can walk normal now and six months ago she was getting up in the morning and her legs would just freeze up and go numb.
Fargino: I don't think people know how prevalent it is in Buffalo, which is a terrifying part. It can take time to diagnose. You might have something wrong with you and not even know it. You're dealing with a lot of chronic pain. My mom has a dropped right foot so wears a little contraption around her ankle that helps her lift her leg. At times, she's not able to pick up her legs very easily and has to grab on something when she walks.
Q. What do you suggest to friends and other loved ones about steps they can take to help support those with the condition?
Fargino: Consider joining a support group. It's common to deal with this on your own rather than come together as a community but that seems to leave a hole. The third Thursday of every month, Change MS hosts a support event. Different speakers will come in, doctors or patients. They'll talk about nutrition and other things.
Q. How can people be supportive?
Fargino: A lot of times people look at my mother, who's still fairly young, and question whether she needs a cane, or they look at us when we pull into a handicapped spot and we're like, "Nope, she really struggles to get to that door, trust me. You'll see in couple of minutes. Calm down.'"
Polvino: My mom won't park in a handicapped spot because she doesn't want anybody thinking things. The only time she's not really happy is when she isn't feeling good. I will do the laundry. I will clean or I'll bring home food.
Fargino: You realize how long a task can take. Grocery shopping that would last an hour might take her three hours, so I do that when I'm in town. A lot of times, they're not going to ask for help but if you offer first ... you beat them to the punch.
Polvino: You need patience, as well. This is a neurological condition and sometimes there's forgetfulness and someone with MS may have a bit of trouble with what they want to say.
Q. Do your moms know each other?
Fargino: They just met as we're planning this. We got them to meet Tony. Neither of our moms are really into support groups but these days it's more common to be open about things like this. She's so excited. Now she wants to volunteer.
Polvino: My mom's glad she went.
Q. Are you two bartending at the fundraiser?
Polvino: We might make a couple things. We'll see.
Change MS runs a monthly support group from 6:30 to 8:30 p.m. the third Thursday of every month in the Hertel Library, 1673 Hertel Ave.; for more info, call 400-9629.
Twitter: @Bnrefresh, @ScottBScanlon