Daily Local News (West Chester, PA)
Driven to help
‘Giving James a Ride’ fundraiser set for March 9 at St. Titus Church Social Hall
‘Giving James a Ride’ fundraiser set for March 9 at St. Titus Church Social Hall.
A challenging battle with a sudden, paralyzing setback due to multiple sclerosis (MS) hasn’t deterred James Myers from trying to live a somewhat normal life. In fact, it’s motivated him. Even as he faces daily struggles that might crush the strongest individual, he remains upbeat with an “irrepressible spirit,” as one friend described it on a Facebook page promoting a fundraiser for Myers, “Giving James a Ride Beef ‘n’ Beer Fundraiser,” March 9, 4 to 10 p.m., at Saint Titus Church Social Hall, 3000 Keenwood Road, East Norriton.
“I was just a normal person running around in the world like anybody else and a little over two years ago I started getting a numbness and tingling in my feet that, over the course of a week, traveled up to my midsection. I walked into the hospital on Oct. 16, 2016 and that was the last time I walked. I had developed a lesion on my spine, thanks to MS. It knocked out everything from the chest down, so I became paralyzed from the chest down,” explained Myers, who had been diagnosed with MS in 2007.
According to the National Multiple Sclerosis Society, MS “involves an immune-mediated process in which an abnormal response of the body’s immune system is directed against the central nervous system (CNS). The CNS is made up of the brain, spinal cord and optic nerves.”
“I controlled my MS pretty well with medication. I only had one semi-serious episode with it, but from 2007 to 2016 I went pretty unscathed. This disease affects a lot of different people in different ways. I had very mild symptoms that didn’t really affect my life or my work. With MS you can get lesions in the myelin on your nerves, usually in the brain. This particular one is in my spine and it’s high enough that it affected me from the chest down. There really isn’t a cure for MS,” he added. “They start out by shooting you full of steroids for a few days and see if that helps.”
A blood-filtering process called Plasmapheresis didn’t help much, Myers said.
“They focused on what medication I needed to be on so that my MS didn’t get any worse, and then I had to spend the rest of the time learning how to live life in a wheelchair,” noted Myers, who had spent several months in the hospital, and later, a nursing home and rehab.
“There is a chance that I will regain some of the function in my lower half. What it’s going to take is time and rehab, and there’s no guarantee of anything.”
While he moved out of his Philadelphia apartment into his brother’s home in West Norriton, he was determined through his ordeal to keep working at his job as a communications specialist for Service Employees International Union.
“My job has been very great about being accommodating for my medical leave so I feel very blessed for that and very thankful,” said Myers, a former reporter for The Times Herald and Norristown Patch editor.
Since commuting to the office was no longer possible —”Our office is probably the least accessible office in the world” —he works mostly from home in a power wheelchair, with some much needed professional assistance to start and end his day.
“My brother is a single father of three children and can’t really be my caretaker,” Myers said. “Insurance doesn’t cover having health care aides come in in the morning and help you get dressed and everything, which costs a surprising amount of money. I definitely need those aides for my morn-
ing routine and to help me get into my chair. Once I’m in my chair I’m fairly independent. I like my job and I think they pay me very fairly, but half my annual salary is now spent on home care. I had $20,000 in unreimbursed medical expenses and home care aid. If I had the whole year of just home care, two hours in the morning and two hours at night, that costs $36,000.”
In addition to the essential home care aides, there is the lingering financial burden of hospital stays, ambulance, and medical supplies not covered by insurance.
Myers is now under the care of several specialists, including a gastroenterologist and a neurologist at the University of Pennsylvania, where he is receiving regular infusions of a drug called Tysabri.
“It’s not a cure; it’s just a drug that keeps me from getting worse,” he pointed out.
When the van he was using to get to doctors’ appointments and other destinations finally conked out, Myers’ friends came up with the idea of the fundraiser to help with the purchase of a new van and other expenses.
“I want to be as independent as possible. I was looking at these vans that can be converted for wheelchair drivers and they’re crazy expensive. Brand new ones are around $85,000, which is way out of my reach,” Myers said. “An older model is in the $30,000 or $40,000 range, which to me is still pricey. I never spent more than a couple of thousand dollars on a car myself. But we happened to find one that’s almost $40,000, so that’s where the benefit comes in.”
With the event a month away, Myers’s longtime friend Melissa Treacy is still welcoming donations for the raffle baskets, auction and food, she said.
“James has done a lot of volunteer work for the community and this is a way of giving back to him,” Treacy said. “We rented the space at St. Titus, but everything else we’re asking people to contribute what they can. What we dont get in food donations we’ll be pitching in to buy. We’re hoping to raise enough money that can at least be put toward the purchase of the van and to help with all of the medical costs ... anything we can give back to help him with something as basic as transportation that will help with his everyday life.”
Entertainment will be provided by Karaoke Gong Show, hosted by Skeletor and billed as “the most evil and fun Karaoke show you will ever attend.”
“Skeletor is a favorite of James’s and he is donating his time, so James is really excited that he will be coming,” said Treacy, who can be reached at 215-680-6151.
Doctors and social workers are continually astounded when Myers informs them that he still works full time, he noted.
“They’re amazed because apparently people in my condition aren’t supposed to do that. They just assume that I’m on Medicaid. I absolutely could do that…quit my job and go on Social Security and Medicaid, but I like working and being active and out in the world and I don’t want to stop doing that.”
Those who take part in the fundraising festivities should not be surprised to find Myers, a longtime supporter of Norristown Arts Council and the Patrician Society of Norristown, joining in every aspect of the the fun, as he spreads that well-known “irrepressible spirit” as far as it will go.
“I’m generally a positive guy, always have been. I’m also conscious that I got handed a raw deal. But there are far better people than me that are much worse off,” Myers said. “I have family and friends and a support network, and a job that was very accommodating about what I have to go through. So I’m very lucky that way.”
Tickets to the event are $30 ($50 for a couple) and are on sale now at bit.ly/ gjartix. Tickets will also be available at the door.
If you can’t make it to the beef ‘n’ beer event, you can still donate to the cause here: www.gofundme. com/6iz5zag