Lo­cal woman de­ter­mined to fight dis­ease

Liv­ing with Mul­ti­ple Scle­ro­sis

The Compass - - NEWS - BY ROBYN SEY­MOUR

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.

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