April 16, 2007
Living with MS, walking for a cure
By Jen Bakken
Every hour of every day, someone is diagnosed with multiple sclerosis.
In May 2003, a young woman, named Amanda (Braith) Ellefson, was given that life-altering diagnoses. The 1998 graduate of Delano High School woke up one morning, on a day like any other, to find the whole left side of her body, from head to toe, numb and tingly.
“I started getting ready for my day and just thought it would go away, as if I had slept on it funny or something and the tingly parts would wake up,” Amanda said.
But, by mid-afternoon, while at work, Amanda decided that she should go to urgent care, since the feeling hadn’t gone away. After explaining her symptoms, the physician’s assistant told her that, worst case scenario, it could be MS.
“I kind of took that with a grain of salt because I didn’t know what that meant, though I had heard of it (MS) I had never, in my life, been really sick,” she said.
After seeing a neurologist, having an MRI, a spinal tap, and other tests, Amanda was given the formal diagnosis of relapsing-remitting MS, within a month of her first symptom and just after her 23rd birthday.
According to the National Multiple Sclerosis Society, MS is thought to be an autoimmune disease that affects the central nervous system (CNS). The CNS consists of the brain, spinal cord, and the optic nerves. Surrounding and protecting the nerve fibers of the CNS is a fatty tissue called myelin, which helps nerve fibers conduct electrical impulses.
In MS, myelin is lost in multiple areas, leaving scar tissue called sclerosis. These damaged areas are also known as plaques or lesions. Sometimes, the nerve fiber itself is damaged or broken.
Myelin not only protects nerve fibers, but makes their job possible. When myelin or the nerve fiber is destroyed or damaged, the ability of the nerves to conduct electrical impulses to and from the brain is disrupted, and this produces the various symptoms of MS.
There are four clinical courses of disease, each of which might be mild, moderate, or severe.
Symptoms of MS are unpredictable and vary from person to person and from time to time in the same person. For example, one person may experience abnormal fatigue, while another might have severe vision problems.
A person with MS could have loss of balance and muscle coordination making walking difficult; another person with MS could have slurred speech, tremors, stiffness, and bladder problems. While some symptoms will come and go over the course of the disease, others may be more lasting.
When the diagnosis was given to Amanda, her mother, Stephanie Braith of Delano, was by her side. Understandably, she became choked up as she recalled that day,
“The first thing she did was look at me, and ask, ‘Are you okay, Mom?’” Stephanie said. “That speaks to the type of person Amanda is. I felt deep sadness, but had hope because of her incredible attitude.”
As not only a mother, but also a friend, Stephanie said she tries to offer support by always being available to listen, which she feels is most important.
Stephanie and Tom Braith have been Delano residents for 22 years. Tom is a carpenter, and Stephanie is involved with the Delano Catholic Community, teaching eighth grade religion.
“Her father felt such empathy for her, and felt helpless knowing there was not a thing he could do, as a father who, naturally, wants to fix things,” Stephanie said.
Reflecting on her diagnosis, Amanda remembered, “Some of the first thoughts I had were, ‘will I die?’ and ‘can I ever have children?’”
Her husband of almost six years, Ryan, even with his own heath problems, including a kidney transplant, has been a source of support,
“When she was diagnosed, I felt scared and bad for her because I didn’t know that much about MS, but I also could relate to how she was feeling because of my own medical problems,” Ryan stated.
Family and friends have been helpful and understanding. Jessica (Emery) Sturgeon, from Howard Lake, a fellow Delano High School graduate, has known Amanda since elementary school,
“We’ve been close friends for about 14 years,” Jessica said. “I remember when I first found out she had MS, I felt sad for her because it’s such an unpredictable disease. I drove to her work with flowers and a card to surprise her, I just wanted her to know I was there for her and how much I loved her.”
Jessica and her husband, Jose, agree that Amanda is a huge part of their lives and also the lives of their children.
“Amanda has always had a cheerful spirit and doesn’t dwell on the negative aspects of this disease,” Jose said.
Since the initial diagnosis, Amanda has experienced severe vertigo, which made her unable to work for three weeks, trigeminal neuralgia, which caused episodes of intense, stabbing, electric shock-like facial pain, slurred speech, intermittent partial numbness and fatigue, loss of balance, and optic neuritis, which has impaired her vision for over three years.
For a little over a year now, she has been virtually symptom-free, with only small bouts of imbalance and some impaired vision. She feels it helps if she keeps active.
As a couple, Amanda and Ryan attend services at Woodcrest Church in Eagan, where they have been able to connect with other young married couples, co-lead a weekly Bible study, and meet many others while serving on the greeter ministry.
Because of her own experiences with MS, Amanda deeply wanted to reach out to others, help them understand and learn more about what MS is, and do something to fight it.
She initiated a fundraising campaign for the MS Society, and after that, the MS Society asked her if she’d like to be a part of the Women Against MS Luncheon Committee. This is an annual benefit luncheon the MS Society sponsors with an inspirational speaker, hosted by people dedicated to ending MS.
“I have had the privilege of being part of this wonderful committee for four years now,” Amanda said.
She added she has had a wonderful time volunteering with the MS Society in multiple capacities, such as registering participants at events and taking part in the women’s getaway, a fun weekend retreat for women with MS, where she has the chance to meet other inspiring women.
Her family and friends said that Amanda has been an inspiration to them and recently, one of them contacted her, wanting to know what living with MS was really like, and how she could support a newly diagnosed friend. Amanda put a lot of thought and time into writing her a letter.
The following are excerpts from that letter:
“I’ll try to explain as best I can so you can better understand what it’s like to have MS. One day you’re merrily skipping through life and free as a bird, with every possible opportunity for your life at your fingertips and then out of nowhere, something comes and pulls the rug out from under you, causing you to fall and stumble, leaving you bruised and in shock. Not to mention the realization that your life will NEVER be the same . . .
“There is no planning around MS. There is no more being carefree when you know that at any moment you could have an “attack” and you might never recover . . .
“When I am quiet and reflect on having MS and how it’s changed my life, I cry. Hard.
“I cry because I’m sad I’m not invincible.
“I cry because no one else truly understands and I feel so alone.
“I cry because I’m angry that I even have to deal with these things at such a young age.
“I cry because I don’t want to be strong anymore.
“I cry because I’m so tired all the time.
“I cry because sometimes I’m NOT okay even though I look it.
“I cry because I have to miss out on things because I’m not feeling well enough to participate.
“I cry because sometimes I feel like I’ve lost my life.
“I cry because now I am labeled as a person with MS and people look at me differently.
“I cry because people ask how I’m doing with that look of pity in their eye and that tone in their voice.
“I cry because my hands and face are sometimes deformed.
“I cry because I have a weak grasp and now often look like a klutz.
“I cry because sometimes I’m in pain.
“I cry because I might wake up tomorrow and be blind.
“I cry because some days I can’t physically do things I can normally do like, walk, see, type, write or speak.
“I cry because now my future is completely unknown and all the plans I’ve laid out for my life have had to shift.
“I cry because it’s made me second guess starting a family because I may not be able to care for my own children.
“I cry because I feel like I have to be so cautious now and don’t feel completely free to live my life to the fullest . . .
“I just never know what the day will bring me. I share all of this with you not to make you sad, but to attempt to show you the reality of this disease . . .
“But I can’t live my life in fear and so I refuse to do that . . . I am cautious without being paranoid. I am naturally an optimistic person, so I am thankful for having that trait because it enables me to see the bright side of everything . . .
“Honestly, the one thing that has really pulled me through all this and helped with my perspective is my relationship with God . . .
“There is a reason God has blessed my life with this disease. I may not know what it is, and I don’t, but I do want to be mature in my faith and have more understanding about life. Having MS brings me that much closer to that goal.
“So I thank God for giving me MS. I am more loving, understanding, compassionate, and caring than I used to be.
“I strive not to worry about the petty things in life and to enjoy life to the max and spend as much time with my family and close friends as possible.
“My life is more rich than it used to be because I don’t take things for granted . . .
“Every day and every moment is a gift from God and I want to relish in it and not waste it. I am constantly trying to use the pain I’ve been through to help others.”
“That letter was written when things were more difficult for me, I’m coping better now, but there still are days when I’m struggling,” Amanda said.
Last year, this determined young woman, along with a group of her dedicated family and friends, put together a team for the MS Walk. They named their team, “Amanda’s Hope.”
The Christopher and Banks MS Walk presented by Anchor Bank is the signature fundraising event of the National Multiple Sclerosis Society.
The MS walk is Sunday, May 6 and more than 250,000 other walkers, in more than 700 cities across the country, participate to help raise essential funds for research and services for people with multiple sclerosis.
“The support her family and friends, show while being a part of the MS Walk and doing something positive together really helps lift Amanda up,” her proud mother stated.
Last year, Amanda’s Hope Team raised more than $6,300 with 16 members. This year, the team has grown to 20 members, and current donations are just over $1,000 so far.
If you would like to donate to Amanda’s Hope, for the MS Walk, visit www.walk4ms.org, click donate and search for the team Amanda’s Hope.
You can also start your own team and find many other ways to donate or volunteer.