Team Paula

Team+Paula


She stumbles. She can’t remember. She’s having trouble moving. She’s been walking for over two hours, and her muscles ache unbearably. She has to sit down. She sees the looks on peoples’ faces as they attempt to figure it out. She knows what those people think, but she’s not stupid or a klutz. She can’t stop her symptoms.

Paula Kirkendall has multiple sclerosis (MS). She went undiagnosed for an estimated 10 years. Then, doctors diagnosed her in 1995, the year she gave birth to her daughter Autumn Kirkendall.

Now, Autumn is 17 years old and takes steps to fight the disease that consumed her mother for over a quarter-century.

 

Paula’s MS

MS disrupts signals sent from the brain to the nerves. It can slow down or, in extremely severe cases, stop the signals from reaching one’s nerves.

“It’s a disease of the nervous system that attacks the myelin cover over your nervous system,” Doctor Sherrill Loring from the Shepherd Center said. “We don’t know what causes it. We think it’s an autoimmune disorder, which means your one part of your body attacks another part of your body.”

Symptoms initially include “numbness, tingling, balance issues and fatigue,” Loring said.

Paula has a type of MS called secondaryprogressive MS.

“Your symptoms flare up, and you never quite go back to normal,” Loring said. “Your normal state slowly degresses.”

Before doctors diagnosed Paula, she underwent physical therapy to treat her symptoms.

“Paula had experienced numbness in her legs and had drop foot for a while,” Randahl Kirkendall, Paula’s husband, said. “We did not know what the cause was, and she focused primarily on physical therapy to alleviate the symptoms with variable results.”

The Kirkendalls didn’t think Paula had a serious problem until she started having issues with her vision and went to the eye doctor.

“He said I had optic neuritis, and I had a neurologist appointment the next day,” Paula said. “He saw what he saw, and I think so much of him for putting me on the path to a diagnosis.”

Paula and Randahl faced many new challenges the year doctors diagnosed Paula with MS.

“It was stressful because we also moved across the country to a new community, and I was starting a new job,” Randahl said. “While it was rough to go through all of that, it also brought some perspective to my life and helped to keep me focused on what was most important – my family.”

As Autumn and her brother, Forrest, grew up, MS always was a part of their lives.

“It’s not something I thought of as abnormal or difficult until I was a little bit older,” Autumn said.

The whole family has seen Paula’s condition become more severe.

“Over time, her mobility and coordination have decreased,” Randahl said. “She used to be a runner and now has to be careful not to trip when walking. MS can also affect cognitive functioning and she has difficulty with remembering things at times or staying focused on a task.”

The Kirkendalls lived in a small town with straight roads before they moved to Decatur – traveling through Atlanta is a very different experience for Paula.

“I have noticed the fact that navigation has become a struggle often leading to many hours of being lost and some swear words,” Forrest said.

In college, Paula studied kinesiology, the study of human movement.

“I think that knowledge and that understanding made [my MS] a betrayal of my body, and it’s still a betrayal,” Paula said.

Before Paula’s MS, she was extremely productive. Now she can’t do as much. She has to spread her tasks out and take multiple breaks. When she cooks dinner, sometimes Paula devotes her whole day to preparing a simple meal.

“Most people can just cook dinner quickly in the evening, but I can’t do that,” Paula said. “I get too tired. I have to do it in small portions throughout the day.”

“It’s definitely hard when you realize that there’s nothing you can directly do to help,” Autumn said. “Sometimes being patient can really just wear on you. There have been moments where I’ve wondered, ‘What did she do to deserve this?’”

Knowing that her mother’s MS took so much from Paula saddens Autumn, but Paula became accustomed to her MS.

“[Managing the symptoms] is doable,” Paula said. She used to be an avid jogger and the lead teacher of a fitness center in Los Angeles.

“I can’t imagine going from being very sharp and very independent to being extremely dependent and needing people to remember things for you,” Autumn said. “I can’t imagine what that’s like for her, and it makes me frustrated because there’s no good reason for why this has happened to her, why it’s happened to us.”

Autumn notices the positive impacts of her mother’s disease.

“I’ve become more aware of why people are the way they are before making a judgement but at the same time not getting mad at people for making judgements,” Autumn said. “I can see in peoples’ faces when they meet her for the first time, they can’t really figure it out.”

Autumn makes a point to talk about her mom’s MS because she believes it’s good for people to know and think about.

“I think it makes some people uncomfortable, but this is a really big part of my life, and I’m going to talk about it,” Autumn said.

One day, when Autumn was in sixth grade, Paula acted as a special education substitute. Autumn and the student Paula worked with were in the same music class. One of the boys in Autumn’s class was trying to impress a girl when Paula walked into the classroom.

“He did something along the lines of looking at me, looking at my mom and then looking at the girl with this kind of expression that was like, ‘That’s her mom. Look at how dumb she looks,’” Autumn said. “It made me so angry because I thought, ‘You don’t understand that there’s absolutely nothing she can do about it, that she’s not stupid. She’s not a dumb person. She just can’t walk very well.’”

 

Team Paula

Paula Kirkendall’s MS affected her handwriting and her fine motor skills. She also has memory trouble. “It  gets difficult because sometimes I have to go pick Autumn up, but I forget and leave her,” Paula said. She  wrote the top writing sample 38 years ago, before her MS. She attempted to copy the second one this year.
Paula Kirkendall’s MS affected her handwriting and her fine motor skills. She also has memory trouble. “It
gets difficult because sometimes I have to go pick Autumn up, but I forget and leave her,” Paula said. She
wrote the top writing sample 38 years ago, before her MS. She attempted to copy the second one this year.

Walk MS is a series of events held all around the United States. The National MS Society sets up short, three mile walks in different cities. The walkers fundraise and donate the money they earn.

Autumn’s team is named Team Paula. The team walked in Piedmont Park on April 13.

This year Autumn’s main goal is to increase awareness of MS. She saw this year as a perfect
opportunity to start her Walk MS team.

“I’ve been in Decatur for about a year,” Autumn said. “I’m a little bit older, so I might be able to organize something. I know enough people that I might be able to get support behind it, and I kind of have an idea of what I want to do. I think it will be a really good thing.”

Forrest and Autumn attended camps for kids who have relatives with MS before. The camp made her want to inform others of and involve them in MS.

“When I got older, I went to this MS camp,” Autumn said. “The kids all had a relative with MS, so there was that connection. It’s been around for a while, but it wasn’t until I got into seventh or eighth grade that I started thinking, ‘Maybe this is something I should do and get more people involved.’”

The money from Walk MS goes to further research to potentially find a cure.

“It also goes to support groups that the National MS Society does in all their chapters like the youth MS camp went to, that was a support group for people who are directly affected by MS,” Autumn said.

Autumn participated in a few of the MS walks when she was little. She chose to do another one as her way to help her mom and others with MS.

“When you have something in your life that you can’t control or you can’t directly help or make better, there’s a part of you that wants to change it,” Autumn said. “I think Walk MS is good not only for raising money, but also it helps people who don’t or do have it feel like they’re actually helping move research forward and helping support people with MS. I guess it’s just a sense of purpose. It’s like I’m actually able to do something about this when in reality, I myself cannot make it better for her.”

Autumn’s creation of Team Paula is the first time any of the Kirkendalls stepped up to become a leader in a walk.

“I think it is her statement of love and caring for her mother, and it provides Autumn with an opportunity to have a positive impact in the world,” Randahl said. “She has a lot of enthusiasm and passion for this and as a result, she will be successful.”