Local woman determined to fight disease
Living with Multiple Sclerosis
Cathy Seymour was first diagnosed with Multiple Sclerosis (MS) in April of 2006.
A year earlier, Seymour and her husband, Geoff, were enjoying a beautiful summer walk with their two young children; Callie and William. However, halfway through the walk, she began to feel what she thought was raindrops on her arms.
“I said to Geoff, ‘I should have brought a coat for the kids, it’s starting to rain.’ He looked at me kind of strange and said ‘it’s not raining’.”
The 35-year-old says she brushed this first incident off, thinking maybe she had just walked by a sprinkler.
At the time her symptoms first began, she was working at the School of Nursing at the Health Sciences Centre in St. John’s.
“I would feel a hot sensation running through different parts of my body at various times. It was almost like someone has poured hot water inside me. I knew something was wrong and at first I thought I was going crazy. When I mentioned my symptoms to one of the girls I worked with, she said it sounded just like a story she had read about Multiple Sclerosis. With the thought of MS in my head, I began to panic a little,” she explains.
Seymour, who had already seen a neurologist due to migraines since 2002, made an appointment to see her specialist and get some answers.
“He didn’t even think I had MS, but he knew something wasn’t right and ordered an MRI, I think more so just to ease my mind.”
That September Seymour lost her vision for three months.
“When I say I lost my vision, I mean I had double vision. People told me this was all in my head and I was making myself sick worrying. So I continued to drive and do everything with the double vision like nothing was wrong. Every morning during those three months I’d open my eyes thinking ‘please let it be gone’ and of course it wouldn’t be. I would get so mad at myself,” she says.
Seymour anxiously waited for her MRI results to come back, but when they finally did, she was still no further ahead.
“It was inconclusive. Apparently lesions did show up on my MRI, but no more than anyone else would have. Lesions can be the result of MS attacks. My specialist ordered me another test where he took fluid from my spin and checked for lesions there. I was nervous during the tests, but there was no pain, just pressure. Having a great neurologist like I have makes it a lot easier. If given a choice there is no one that could ever top Dr. Mark Stefanelli. He is very compassionate and I believe he truly cares about your wellbeing,” she adds.
On the way to St. John’s in April of 2006, Seymour received a phone call from the head nurse at the Neurology Clinic in the capital city. The nurse, someone Seymour had gotten to know over the past few months, confirmed lesions did appear in the spinal fluid and Seymour did indeed have MS.
“I already knew and had known something was wrong. You know your own body. I knew I wasn’t crazy, but I had a whole other issue to deal with. Sometimes I think my dad may have taken the news harder than I did. He was so sure I didn’t have MS. Imagine being a physician and having a child that was sick and not being able to fix them.
“My initial response, I think, was pretty normal. I cried, I felt self-pity - the why me sort of thing, what did I do to deserve this, is this inherited and could I pass it on to my children? And of course, the only picture I saw in my head was a wheelchair. When people think of MS they automatically think wheelchair. I had no idea what MS really was or what it might mean for me. I wondered how did I get this disease?
“The first thing they tell you is you shouldn’t have children, I already had two. I was scared and I felt so guilty for doing this to my family. All I could think about was them having to take care of me all the time. Now, I am much more educated about the disease but I am still afraid sometimes if I let myself dwell on it,” she says.
Seymour believes because the prognosis for MS is vastly different than it was even 10 years ago, her future still seems bright.
“The new treatments for the disease are causing fewer relapses, meaning less damage and fewer disabilities as you age,” she says.
Seymour’s treatment consists of three injections a week, which she does at home, sometimes with her husband’s help.
“The treatment side-affects can sometimes be worse than the disease, but I chose to fight it. I still worry about my children, even though they say it’s not inherited and I still feel guilty sometimes about what this disease has done or what it might do to my family in the future.
“ I now know what doctors believe can cause MS, one being a low Vitamin D level. I believe that’s what happened to me. When I was diagnosed my Vitamin D level was eight, it should have been around 90 or more. It is now in the high eighties because I take 3,000 units of Vitamin D every day,” she explains, adding. “we have a high rate of MS cases in this province and I know of at least six girls who went to high school with me who have been diagnosed. It makes you wonder doesn’t it? Is there something we could have done to prevent it?”
Seymour has been diagnosed with Relapsing-Remitting MS, the most common type. People with Relapsing-Remitting MS may experience a series of attacks followed by a complete or partial disappearance of the symptoms (remission), until another attack occurs (relapse). It may be weeks or even decades between relapses.
“For ever person the disease is different, it never affects two people the same. Sometimes you can be too educated so I try not to read too much. When I try to explain what MS is to people, I always bring up high school biology. Everyone remembers the picture of the nerve with the myelin coding around it. [Myelin is a dielectric (electrically insulating) material that forms a layer, the myelin sheath, usually around only the axon of a neuron. It is essential for the proper functioning of the nervous system.]
“MS is when your own immune system attacks that coding and breaks it down until there are breaks in the myelin causing the impulses which your brain gives your body, for example, to pick up a glass, to be interrupted. I have dropped many dishes on the floor and flung many pencils since my first attack,” she explains.
Since being diagnosed, Seymour’s life has drastically changed.
“You become more aware of your immortality. When someone you love is diagnosed with any type of disease or illness it puts you to a test, a test that challenges your patience and your ability to put someone else before your self in every aspect. Before I was diagnosed and I was just having the symptoms, I put Geoff literally through hell and he passed with flying colours.
“I don’t know if I’d call myself a strong person, but I am definitely more aware of everything going on in my life. I appreciate everyday I’m here and am not having any symptoms.”
In regards to her social outlook, Seymour believes since being diagnosed, a lot of residents have her stereotyped in relation to the way MS used to be.
“ You see a person who is trapped in a wheelchair. It’s harder in a small community I think because you know everyone else knows what’s going on. It can make you a little paranoid because people don’t have all the facts. I still have people come up to me and look at me like I’m dying and ask so sympathetically, ‘how have you been doing?’ Right now. I’m doing really well, but people only harp on the bad things they hear, it’s human nature. In reality, I may go the rest of my life and never have another attack or then again, tomorrow I may wake up and not be able to feel the right side of my body. It’s a guessing game. I would have to say, people should be informed before they decide my fate or anyone else’s. I’d rather a ‘hey, what are you at?’ than pity.
“I am angry with how people react to this disease but I reacted the same way before I was diagnosed. The only people I knew who had MS were disabled and a lot older than me, but what I didn’t know was their MS was diagnosed too late to be treated properly. It could have taken years to diagnose MS in the past. I believe I am the same as anyone else and although I may be
a little more careful than I was before, I’m still me.” The worst part of MS, Seymour says, is the unknown. “It’s so frustrating no one can tell you what will happen to you. It’s not like there’s a guide to what will happen, no one knows what will happen, not even the best specialist out there can give you a hint. I can handle a disability, I’m sure I would learn to adjust, but bring it on now, don’t nit pick at it for 10 years, let me know and I will deal with it. Unfortunately, that’s not how it works.
“With most other diseases you are told what to expect, but everyone is affected differently by this disease. My greatest fear is not knowing what will come next, will I be able to see next month? Will I be able to dance with my son at his graduation in nine years? I am going on my third year without a relapse. Doctors tell me the medication should take me to at least two years without a relapse so everyday I wonder if today is the day it comes back,” she explains.
“For anyone who has just been diagnosed with MS I am guessing you feel like your whole world has just been turned upside down. Don’t let the doctors and other people freak you out, they always tell you the worst things first. My nurse once said to me ‘Sure your too busy to have MS, your working, two kids’, etc, and in one way she is right. I am too busy to harp on it in any way.
“You have two choices; you can live your life and take it one day at a time, or you can sit at home and feel sorry for yourself. I’ve seen people react both ways and the ones who are sitting at home depressed are much worse health wise than the ones still living their lives. There are breakthroughs everyday with this disease and there is hope for a cure, you have to believe in that.”
Seymour says being an advocate for MS sort of comes with the disease and without research, the prognosis may have been a lot worse. Every year since being diagnosed she has participated in the MS Super Cities Walk in St. John’s and is surprised at how many people she sees participating from the Conception Bay North area.
This year, Seymour and her MS Super Cities Walk team are hosting a Halloween Costume Dance at the Shearstown Lions Club on Oct. 24.
The dance, which is to raise funds for the walk, will award prizes for the best costumes, as well as other prizes throughout the night.
For more information on the dance contact Cathy or the Bay Roberts Wescal.
Seymour is currently working as a casual school secretary for the Avalon West Region.
“I love my job and I am quite capable of doing it well. I have a very caring and understanding husband and two wonderful children who make my life worth the fight.”
LIVING LIFE - Three years ago Cathy Seymour was diagnosed with Multiple Sclerosis. The 35-year-old Bay Roberts resident doesn’t let her MS discourage her and is determined to live life to the fullest. This past summer, Seymour, along with her husband, Geoff and their two children, Callie,4, and William, 8, enjoyed a family trip to Walt Disney World in Florida.