Multiple sclerosis: Federal Way woman turns diagnosis into advocacy
By GREG ALLMAIN
Federal Way Mirror reporter
April 5, 2012 · Updated 5:48 PM
With National Multiple Sclerosis (MS) Month having just ended in March, and the MS Walk coming up in Tacoma on April 14-15, there's one Federal Way woman who is well acquainted with the disease.
Deanna Kirkpatrick, 44, was diagnosed with the debilitating condition six years ago. For Kirkpatrick, it started with the onset of transverse myelitis, one of the rarest neurological conditions.
"I was diagnosed six years ago, in April, with transverse myelitis, which is a very rare onset to multiple sclerosis. And in a number of days, I became paralyzed up to my earlobes. There was a 24-hour period where they didn't even think I was going to make it," she said.
According to the National Institute of Neurological Disorders and Stroke, transverse myelitis is an inflammation across both sides of one level, or segment, of the spinal cord. This can damage or destroy myelin, the fatty insulating substance that covers nerve cell fibers. That damage leads to nervous system scars that interrupt communications between the nerves in the spinal cord and the rest of the body.
Kirkpatrick described the events that led to her conclusion that something was awry.
"I went to take a bath, and I stuck my left leg in, and I thought the water was cold. I was really kind of irritated, because I started thinking about my water heater and having to get it replaced. And then I stuck my hand in, and it was scalding hot. I couldn't feel any temperature," she said.
"And my left leg started to feel.. like it was asleep, that pins and needles sensation, and it slowly started traveling up my left leg and then my right. My scary moment of 'Okay, I need to go get help,' was when there was a delay between the gas and the brake in my car, and I couldn't move my leg."
Life since diagnosis
Kirkpatrick said she was one of the lucky ones when it comes to transverse myelitis. One-third of patients either die or end up paralyzed from the ears down, while one-third of patients end up paralyzed from the chest/waist down. The last third of those affected by transverse myelitis are like Kirkpatrick, who recover from the attack and eventually are able to walk and function somewhat normally again.
It was after her recovery from transverse myelitis that Kirkpatrick discovered the larger issue at hand: relapsing remitting MS. Kirkpatrick, a self-described "go getter" who had been a radio DJ and pharmaceutical sales rep before the disease struck, said her diagnosis was a soul searching moment.
"It was very difficult, it was very much a struggle," she said. "You don't plan on these things in life happening. It's like being in a bad car accident or having your house burn down. And you literally, have to step away from who you thought you were and where you were going in life, in regards to any career aspirations."
Friends and family and neighbors have been a huge component of Kirkpatrick's life since her diagnosis.
"My friends and family, they say I inspire them, but really, they inspire me. And when you're diagnosed with a chronic disease, you find out pretty quick it isn't just about you. It affects your friends, your family, your neighbors. And I'm pretty blessed that I have an amazing set of friends and family and neighbors who help me when I'm sick. There are days where I'm bedridden and crumpled up with pain and exhaustion and I have to medicate myself, so I can't drive, I can't get out. I have neighbors who step up. They're bringing me food to the door, taking me to doctors appointments. It allows me to live independently for as long as possible."
Purpose and passion
Kirkpatrick fills her time now being a patient advocate for others who have been recently diagnosed. She also works as a show producer and co-host for two shows on Blogtalk Radio.
In her patient advocate role, Kirkpatrick calls up newly diagnosed people and helps answer questions they have about what their life will now be like. The two shows she works on are MS LOL with Amy Gurowitz, and Stu MS Radio, with Stuart Schlossman, who runs an internationally recognized website about MS.
One interesting outcome for Kirkpatrick in her battle with MS has been her advocacy for medical marijuana access for MS patients, she said.
"The first five years, I was taking Oxy(contin), Hydrocodone (Vicodin)…different things to control my pain. I did that for the first five years, and then they said 'Let's implant a pain pump inside of you.' … That's when my parents and doctors talked about medical marijuana. And it's funny, because it sounds like a warped after-school special to talk about medical marijuana, but it really does work. And it really has helped control my pain," she said.
Like many others who have found themselves faced with their own mortality due to the onset of a debilitating disease, Kirkpatrick said her experiences with MS have made her cherish life even more.
"I just hope to make the most of my life, enjoy it and give back as much as I can. I think by doing the radio shows and being an advocate, that really helps me define my purpose and my passion," she said. "And I think, no matter what you do in life, you have to find that purpose and passion, and his has become my purpose and my passion."
Contact Federal Way Mirror reporter Greg Allmain at firstname.lastname@example.org or 253-925-5565 ext. 5054.