In recognition of ALS Awareness Month, we’re sharing stories nearly every day in May about people living with the disease and their caregivers, the volunteers and health care providers helping to make the lives of people with ALS better, the fundraisers and participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the fifth profile in that series.
Thirty-seven-year-old Melissa is a mother to Anthony (14) and Lauren (9). She’s been living with ALS for two years.
“I can’t say that I parent any different [since being diagnosed with ALS],” Melissa said. “As a parent, you have to pick and choose your battles and I’ve never been one to sweat the small stuff. But I can see how much my diagnosis has made my children grow and mature.”
She said Anthony and Lauren have been very brave and their “unconditional love” gives her the strength to keep fighting every day. Her focus is on trying to live every day to the fullest and show Anthony and Lauren how much she loves them.
“[My kids] manage to keep a positive attitude and continue to love me as much as they always have, even with all the changes happening to me,” Melissa added. “They’ve taken on so much – things that most other kids will never have to deal with – and they somehow manage to stay grounded.”
And, while ALS has changed the things she, Anthony, and Lauren can do together, they can still do a lot together. “I can no longer ride bikes or play sports with them, but we make sure to spend as much time as we can watching movies, reading books, playing games, etc.,” she said.”
ALS at 35
It would probably be an understatement to say ALS took Melissa very much by surprise.
She was always very active – enjoying running, exercising, riding bikes with Anthony and Lauren, trying new sports like tennis and golf with her boyfriend, Jason, and much more.
From 1998 to 2006, she was in the Army National Guard, serving as a medic with the 876th Engineer Battalion in Johnstown, Penn. She joined for the structure and discipline, and to be part of something bigger than herself.
“I was proud to serve my country,” Melissa said. “[And] while I wouldn’t change my decision to serve, I can’t help but wonder if the military is what caused my ALS as veterans are twice as likely to develop the disease.”
In 2008, she joined VA Butler Healthcare as a registered respiratory therapist. Then she moved to the administrative side of things at VA Butler, most recently managing a customer service program for veterans and employees – a program she built from the ground up. ALS forced her to medically retire in March 2018.
Melissa’s first ALS symptoms were muscle fasciculations, muscle cramps, and a weak right thumb, which she started noticing in early 2016. She had multiple tests through VA Butler Healthcare and VA Pittsburgh Healthcare System and received the unfortunate diagnosis of ALS on September 8, 2016, at the age of 35.
A month later, she traveled to Johns Hopkins in Baltimore for a second opinion. Doctors there confirmed the ALS diagnosis.
“I was devastated,” Melissa said. “But I wasn’t ready to sit back and let the disease take over. That day at Johns Hopkins, I immediately started looking into medication trials in which I could become involved. I could never just give up. I have too much to live for.”
After her diagnosis, Melissa’s friends and family quickly formed the Miles for Melissa team for the Pittsburgh Walk to Defeat ALS. There’s also a Miles for Melissa Facebook page that is managed by her friends.
Melissa receives medical care at both VA Butler Healthcare and the Louis Stokes Cleveland VA Medical Center, and said she’s been lucky to have such wonderful care through the Veterans Health Administration (VHA).
Since October 2017, she’s been receiving Radicava infusions through the VA. Before starting Radicava, she participated in a medication trial at Johns Hopkins.
Confidence About a Cure
When asked what she’d say to someone newly diagnosed with ALS, she said, “Take it one day at a time and never give up hope. Medical breakthroughs happen every day. Science and medicine have made great strides and do amazing things. The day is coming that a cure for ALS will be discovered.”
Melissa said, for that wonderful day to come, more people need to get loud about the disease.
“We need as many voices as we can get,” she said. “For a disease that’s been around for so long, there are so few advances. If ALS could take the spotlight, I believe there could be more breakthroughs and even a cure. But the only way for it to take the spotlight is for everyone to raise their voices in unison.”
To that end, Melissa’s friend Karen will attend the National ALS Advocacy Conference in Washington, D.C., next week to be her voice on Capitol Hill. She wants Karen to ask her local senators and representatives “what they plan to do about this devastating disease and how soon they plan to get started.”
Not a Burden
Melissa’s personal mantra is a quote from Thomas Edison: “When you have exhausted all possibilities, remember this: you haven’t.”
“Not only does this [quote] personally speak to me, but I also have to hope it speaks to health care providers, scientists, and researchers in their quest to find a cure,” she explained.
And what should loved ones of people with ALS do? “Make time for [them], show them how much you care, and be vocal about your feelings for them,” Melissa said. “They need reassurance. They need to know they’re cared for and loved, so they don’t feel like a burden.”
When living in a world that’s been “completely turned upside-down” by ALS, Melissa added, “stability and support are key, so let [your loved ones with ALS] know they’re not in the fight alone.”
And then, as mothers do, Melissa brings the attention back to her kids. “[Anthony and Lauren] are a huge help to me and want to pitch in and be involved,” she said. “I appreciate them more than I could ever put into words. They’re my world [and] I don’t know what I’d do without them.”
The ALS Association doesn’t want anyone to fight alone. In honor of ALS Awareness Month, please Raise Your Voice to join and elevate the fight against ALS for Melissa and all people living with the disease.
Update your Facebook profile with the ALS Awareness frame. Contact your representatives in Congress. Recruit your friends to like our Facebook page or follow us on Twitter. Promote a fundraiser. Host a fundraiser. Register for a Walk to Defeat ALS or a Team Challenge ALS event.
Raise Your Voice however you can. Together, we will be heard.