Life is about choices. Some small. Others are rather significant. Angela Khan has chosen to use her Multiple Sclerosis diagnosis to empower others by sharing her life-changing story.
The Red Oak resident, who serves as the divisional director for revenue cycle training and development for the Baylor Scott and White healthcare system, still live a very active lifestyle.
When she was first diagnosed with MS in 2011, Khan said it through her for a loop. However, instead of closing herself off from the world, she allowed more people in.
The diagnosis has opened up doors that allow Khan to share her journey with people. And, she hopes that by sharing her experience with others, she will provide encouragement and strength to continue moving forward.
“It's weird that I say this but it is kind of a blessing in a sense. I get up at every system orientation and I tell my story," began Khan on her approach to the diagnosis. "You would not believe the people that have come up to me afterward and said thank you for sharing that. Had this not happen to me I would not have had this opportunity to reach out to others and give them some hope to keep moving.
"If I were just to sit down and give up and say ‘woe is me,’ I would not be walking today. I truly believe that. You have got to have a persevere positive attitude to push you through. That has always been me. Give me something and let me run with it. You hate to say that an illness is a blessing. That might not be the right word for it. It shakes you up and it gives you that perspective of what is important. Before it was that I have to do this, this, and this. It has taught me to slow down.“
According to the Mayo Clinic’s website, Multiple Sclerosis is a potentially disabling disease of the brain and spinal cord (central nervous system).
“In MS, the immune system attacks the protective sheath (Myelin) that covers nerve fibers and causes communication problems between your brain and the rest of your body,” the Mayo Clinic's website states. “Eventually, the disease can cause the nerves themselves to deteriorate or become permanently damaged.”
The Mayo Clinic also states there is no cure for Multiple Sclerosis. However, treatments can help speed recovery from attacks, modify the course of the disease and manage symptoms.
“I do system orientation for the Baylor Scott and White system every quarter. They have leaders that will come it that will come in and do the training. I was standing there one day and my feet and waist went numb, which I thought was kind of odd little thing. You are standing there and you can’t feel your feet. So I went to the doctor,” Khan said. “At that time I was working on my masters and working a lot. I thought that maybe this was a pinched nerve or something not sitting right. So she gave me a round of steroids and an anti-inflammatory. She said in two weeks come back and we will see what is going on.”
Khan said when she returned two weeks later things has not gotten better — but worse.
She told her doctor that she could feel a shocking sensation when she would bend her head down. Khan described the sensation as being similar to placing a finger into a light socket. The shock would then travel all the way down her spine and legs.
The doctor then sent her to get an MRI done to get a clear idea of what is taking place inside her body. Once the results came back in the doctor told Khan she had MS.
“You go into shock and get kind of numb. I am very active and very busy. I am the caretaker for everything and everybody pretty much. I am very independent. So when you put somebody in that situation you are like ‘ok, what is going to happen if I can’t walk. What is going to happen if I can’t see,’" Khan recalled.
Soon after, she began doing what any other would do when wanting to learn more about a topic — scour the internet.
"The first frame of reference was my sister-in-law Jackie, who had primary progressive MS,” Khan explained. “From that point, I was referred over to Dr. Annette Okai, who specializes in MS. Her nurse is actually a certified MS nurse, which is unusual. That is what they do and what they focus on. So when I walked into her office, the first appointment was like 45 minutes to an hour. She said tell me what is going on. I would sort of list a few things. She would say tell me exactly how you’re feeling. They gave you a sheet saying do experience this and that.”
Whining is not an option, explained Khan. In fact, Multiple Sclerosis has changed her attitude.
At times, Khan has had to rely on people at certain times for help because the disease affects her body in different ways at the time. One of the first times the disease showed it unpredictability was in 2012.
“I have had to take off work for optic neuritis, which is inflammation of your optic nerve. I lost sight in my eye for about four or five weeks. I thought, is this it? Are you going to be able to power through this and make it on the other side of it? Are you going to have eyesight or is this permanent,” Khan recalled. “At the very beginning, I didn’t do it because I was always the one to be the helper. So it wasn’t until someone said to me people don’t offer to help unless they really want to. Whenever you don’t take the help that is disappointing to them. So if you have to delegate something then asked for it or if somebody offers it take it. They want to help. That is the one thing they can do to help. They can’t help with the disease, but they can help me manage it.”
Khan stated that her body is also affected by extreme hot and cold temperatures. Walking long distances can be a challenge at times as well. This change has caused her to modify what she does at times.
“I used work Monday-Friday and then get up on a Saturday morning early and go run errands. I had to stop doing that. Sometimes it is so frustrating because you have the will and the want to, but your body does not follow along. Now I don’t get up at the crack of dawn and get out and do my thing. I don’t feel like I have wasted day. It is really slowing down enough,” Khan noted. “Sometimes it affects my memory. Like words. If I am looking at something telling you, I want that. The word of that (object) is in my brain, but I can’t get it out. My staff has picked up on it too. When I am tired is when the word recall is tough for me.”
Khan added that, at 45 years old, she never thought that she would be battling Multiple Sclerosis
“My mother, Betty Taylor, had breast cancer. She died when I was 16 years old. She died at 44 years old. At that time it was the 80’s and the treatment was not what it is now. So I always thought I would make it to 44. Maybe that would be something to hit me, breast cancer. You think hereditary right but not this. This was way out of left field,” Khan said. “I didn’t know that I could be this strong in working with something that can be as hindering as MS is.”
Betty added that she is going to do everything she can to halt the disease progression, but if it wants to have more of a say, then she is going to adjust to that new normal.
The road that Khan has traveled since her diagnoses has not been an easy one. Khan's sister-in-law, Jackie, passed away three years ago and her father and husband last year.
She stated that her faith, family members and friends have kept her strong during the tough moments.
“You don’t realize how supportive people are. It comes from people that you would never have thought of like an acquaintance from work or people that send cards when something like this happens. We never do that anymore, we email or text. Someone to take that time out and do that or physically pick up the phone and call that to me was the biggest part,” Khan stated. “I think that talking about it helps. If I were just closed off and never talked about it, I would not be sitting here having this conversation with you.”
Khan continued by saying that being around people and having that support has helped her move forward but at times is it good and healthily to show emotion.
“Showing tears and showing emotion is strength and it is a positive. Sharing my story is a positive,” Khan explained. “You never know how that may help someone to see someone that is up and moving around and active.”
Treatment and MS Specifics
Khan is on a medication regimen, which helps to manage the disease affects. Along with the drugs, Khan says that communication with her doctor, Okai, listening to her body, knowing its limits and maintaining a healthy lifestyle are the keys to maintaining a good quality of life.
Okai is the Medical Director at the Multiple Sclerosis Treatment Center of Dallas. She said there is no one single road map with people.
“Multiple Sclerosis has been perfectly described and identified for over 150 years. We only got treatment in 1993. Since 1993 we have had 14 approved treatments with the bulk of them coming in the past 10 years. Most of those treatments are geared towards slowing down the disease and slowing down the progression of disability,” Okai said. “The signs of MS are very unpredictable, but the most common ones would be visual disturbances, which can be loss of vision, blurred vision and double vision. They can have weakness on one side of the body or in one extremity. They also can have numbness, tingling. Those are the major ones they may experience.”
Okai said Multiple Sclerosis affects people in the prime of their life between the ages of 20-50 years old. The degree of severity of the disease varies from person to person. Each person is different and their treatment in how to manage the disease is tailored to them. Okai stated it took several attempts with medication to get Khan stable in managing her disease.
The Mayo Clinic’s website states that Multiple Sclerosis can occur at any age but women are about twice as likely as men to develop the disease. It also states that some of the risk factors include a family history of disease, smoking and if a person has had certain infections like the Epstein-Barr, which causes Mononucleosis.
Okai advises people if the have been diagnosed with MS start and stay on the medications that have been prescribed to you by your physician.
“Those are approved medications that have been shown to actually change the course of the disease. So it is important to start early and stay on DZ modifying therapy. It is also important to seek care with someone that is familiar with the disease and has a lot of knowledge because there are different aspects that need to be addressed,” Okai said. “Have a comprehensive care center that is taking care of you and your disease. Also, adopt a healthy lifestyle. In terms of eating healthy I don’t encourage one specific diet but to have healthy options when you eat and also remain active.”
Khan has a lot in store for her future and sees a lot of possibilities. She wants to travel more and learn about new cultures. She also wants to continue to encourage others who are battling this disease. Khan advises people who have just been just diagnosed to gather strength and support from the people around in your life.
“Take a minute to breathe. Don’t automatically go to the dark side. Gather information from the right sources. The biggest thing would be is to find a provider that knows this illness. Had I not I wouldn’t be as functional as I am today because she gets it. She knows,” Khan explained. “If you are going to a general neurologist they treat many things. I can truly say that I have a treatment team. I am very close with them in that I feel very comfortable. Finding a physician that you feel very comfortable with sharing and makes you feel like you are the only patient that they have that day and not just another number is important.”
For more information about MS, visit the National Multiple Sclerosis Society website at www.nationalmssociety.org or the Mayo Clinc at www.mayoclinic.org.