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Living With MS

You’ve been tired for months. What first started off as a bit of clumsiness and lack of coordination has worsened to impaired sensations in your hands and feet and vision problems. You make an appointment with your doctor and after an initial checkup, they send you off to a neurologist for an MRI and after a few agonizing weeks, the results come back. You have Multiple Sclerosis (MS).

Despite decades of research, the cause of MS remains a mystery. The best current evidence suggests that lifestyle, environmental, genetic and biological factors all contribute. The disease is currently classified as an autoimmune disease of the central nervous system (brain, spinal cord). The disease attacks myelin, the protective covering of the nerves, causing inflammation and often damaging the myelin. Myelin is necessary for the transmission of nerve impulses through nerve fibres. If damage to myelin is slight, nerve impulses travel with minor interruptions; however, if damage is substantial and if scar tissue replaces the myelin, nerve impulses may be completely disrupted, and the nerve fibres themselves can be damaged.

Canada has the highest rate of MS in the world, with an estimated 1 in 340 Canadians living with the disease. While it is most often diagnosed in young adults aged 15 to 40, younger children and older adults are also diagnosed with the disease. It is also three times as likely to occur in women as in men and is more common in people of northern European background.

But research is discovering some wonderful things regarding the importance of exercise in the delay of onset of symptoms and for helping patients diagnosed with the disease. There is currently no cure for MS, but many diagnosed with the disease are incorporating some level of exercise and other wellness activities into their daily routine to help them find peace with their diagnosis.

 

Karma Deakin-Harb

My name is Karma Deakin-Harb. I am 32 years old and I work as an HR Consultant. I am originally from Ottawa and I moved to Edmonton over 3 years ago. I studied social science at the University of Ottawa and I got into HR after graduating. I then returned to school to do an HR certificate, and I am now in the process of doing an MA in HR at Pennsylvania State University.

Aside from my day job in HR, I also moonlight as a spin instructor at LA Fitness 3 days a week. For my own fitness I do HIIT classes at Blitz Conditioning the other 4 days. I've also started training to do powerlifting with a trainer at Evolve. I hope to someday be strong enough to compete! Aside from that, I am a wife and fur mom to my two kitties, Yoshi and Pepsi.

I was diagnosed in 2011 at the age of 26. I was having a very stressful year and started experiencing vision problems; I couldn't see out of the right of either eye. I went to see an optometrist who told me I was wearing too much makeup and gave me eye drops. So obviously that didn’t help, and I asked to be referred to an ophthalmologist. She told me the same thing, but I really couldn’t accept that my 20/20 vision was going so bad so fast. I asked for a second opinion, and a bunch of tests discovered something was very wrong. That’s when I was finally referred to a neurologist.

In April 2011 my father passed away suddenly, and a few months after his passing I was officially diagnosed. It was an extremely hard time to say the least.

Initially, I had a very hard time accepting my diagnosis. I have always been pretty active, so then to be initially put on steroids to help the symptoms was very tough. I have always considered myself a very strong woman, but those days were pretty dark, and I felt weak.

As time has passed though, I realized more and more than MS is one of those diseases where you know you have it, and any day you can wake up in a relapse, so I had to push forward. I think now I am even stronger than before, both physically and mentally.

I am an extremely competitive person, so with all of this now becoming the fiber of my being, I sort of told myself "F*uck it...I'm going to be a badass woman" and everyday it’s my mission to kick MS' ass.

By becoming a spin instructor 4 years ago helped me stay accountable to my fitness goals. I had read a lot of research around how fitness can help delay the progression of the disease and issues around co-morbid conditions. So, with all that in mind, I knew it was important to stay active. In September last year I took up powerlifting to hopefully mitigate even further symptoms of muscle weakness. All that combined with disease modifying therapies that I am on will hopefully slow things down overall...fingers crossed!!

I'm still at the very beginning stage of MS, 6+ years after diagnosis. In the last year though I have suffered from some mental health issues associated with my MS.

Most people who find out that I have MS are in total shock when I tell them or if they find out, because of how fit I am. I teach a very difficult spin class and most of my participants have said it’s the hardest class they have ever done. I’ve also been dubbed "The Terminator" by some of my regulars.

 

Chris Kieser

My name is Chris Kieser and I am a University of Alberta graduate with a Bachelor of Commerce. I’ve been married for almost 30 years to Susan and have two children, Courtney, a nurse at the Stollery Children's Hospital, and Riley, an Engineering student at U of A and Captain of the Golden Bears hockey team. My career was in retail management, as a manager at Holt Renfrew until shortly after being diagnosed with Multiple Sclerosis 25 years ago.

I was diagnosed in 1993 when I was 27, after five years of symptoms that neither doctors nor I could explain, and six weeks after the birth of our second child, Riley. I experienced symptoms like double vision, tingling sensations, numbness and loss of balance, which were minor in the beginning – but I knew something was not right.

A major attack put me in the hospital where I received an MRI.  The diagnosis was MS.  At first, I felt a sense of relief.  I finally had an explanation for the symptoms I was experiencing.  At that time, I felt my diagnosis was a minor setback that could be managed by making a few small changes. I carried on and went back to work. One year later, after a second major attack, I was forced to reevaluate my life.  Work was no longer a priority; my health had to be number one.

This was a major shift for me.  Up until then, I was a career-minded professional and an active person. These pieces of my identity had been taken away from me.  My self-confidence and self-esteem were at an all-time low. I needed to find a new sense of purpose in my life.

I started to raise funds to find a cure for MS to regain a sense of control. While the Johnson MS Bike tour and the First Truck MS Drive Fore a Cure golf tournament are great events, I thought to myself – riding a bike, not safe for me, and any golf club in my possession would not be safe for others!

The best fit was the Jayman Built MS Walk. It's safe, great for the whole family and has an awesome atmosphere regardless of the weather.  My family has participated in the MS Walk, and have been raising funds for the Edmonton event for 24 years.  I have had great support from family and friends through volunteering and donations during all those years.

If you think of all the physical things you do in a day, I have had to adapt all of them. Even the small things that most people take for granted like taking a shower and getting dressed.  I am at the stage where everything takes longer and is more tiring! Just when I thought I couldn't go any slower, I'm going slower!

It's the same mentally as well. I have to concentrate on one thing at a time to stay focused.  It is also very frustrating as I was always a very active person and MS has significantly slowed me down.

My exercise regime is important to me and I know if I wasn't doing it I wouldn't be as flexible or mobile as I am. I have a program of stretching and walking every day and go to the gym to use exercise equipment twice a week.  It has taken me a long time to accept the fact that my exercise program isn't a normal exercise routine for most men.  It has taken a while for me to accept the fact that it's okay for me to be doing bicep curls with one 10 -pound weight when the girl beside me is using two 20-pound weights, one in each hand!  I have learned that it is very important to keep the muscles working. You know the saying: if you don't use it, you will lose it! Well I don't want to lose what little bit I still have! Exercising is helping keep me active, mobile, and independent.  I don't take independence lightly… I want to do as much as I can for myself for as long as I can.

Stretching is an important part of my daily regime as my limbs can get tight and spastic. If I don't keep them limber it makes doing everyday activities much more difficult like transferring from my wheelchair to the couch, or getting out of bed.  I want to continue being able to do everyday things without assistance.  Again, stretching my body helps me keep my independence.

Early in my days with MS, I had what is called relapsing/remitting MS. I had an attack but then symptoms would subside, and I could return to normal activities.  Little by little over the years, I did not recover, after the attacks, to my previous state and my mobility slowly reduced.  Many people with MS progress over time into secondary progressive MS.   This has happened to me.  I have lived with MS now for 25 years.  I spend the majority of my time in a wheelchair but I am still independent and as active as possible. I have a great support system at home and although I am frustrated with the strength I have lost, I am thankful for the mobility that I still have.

My kids are incredible! They are always there to help when they can, and my wife is 10 x’s as great (but don’t tell her I’ve said that!).  She is my best friend, listener, my inspiration and the person who gets me up when I’m down and brings me down a notch when I’m getting a little too big for my britches.

I wouldn't wish MS on anyone but many times with adversity, life opens other doors.  I have met many wonderful people through the MS community that I would not have encountered had it not been for my MS adventure.  Although my disease forced me out of the work force, it gave me the opportunity to spend more time with my kids as they grew up.  I count that as a blessing.  I take every day in stride, try to stay positive, and make sure to have a sense of humor.  It gets me through many a mishap!

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