The Importance of Exercising and Staying Active for Alphas / with Karen Skålvoll (November, 2016)


Published on October 27th, 2016

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Welcome to our first of many Blog & Discussion Articles.  In this premier Blog, we want to bring attention to the importance of staying active and exercising for Alphas.  Karen Skålvoll will moderate the discussion below the article, but first a little more about Karen.


karen-s-5At the early age of five Karen Skålvoll started out as an athlete, with disciplines in swimming and horse riding. Eventually she also took up running. She always enjoyed sports, but found that she always had to train twice as hard as others to achieve the same results. But she just accepted this and carried on. In her early twenties she felt short of breath, and went to see her GP to find out if she had asthma. The doctor advised her that  she was simply not fit enough, and needed to exercise more. Relieved that she didn’t have asthma, Karen happily followed the doctor’s orders.

Whilst training for New York Marathon in 2009 Karen’s body suddenly gave up on her. She was hospitalized for lengthy periods, but the doctors could not figure out what was wrong. In the beginning of the year she was told to start wrapping up any loose ends, because they did not expect her to survive 2010.

From December 2009 through spring of 2011 Karen spent more time in hospitals than at home, and was frequently rushed to medical care after severe asthma attacks. In fact, due to her very sensitive allergies to perfumes etc., a local hospital ended up keeping a special room for her sole use in the ER unit. In this period she saw a number of specialists and doctors in Norway, but no one was able to diagnose her condition.

Towards the end of 2010 she came to know her husband-to-be, and in the spring of 2011 she took the plunge and moved to Germany to be with him. During a familiarization visit to their GP, it was suggested that she see a specialist in the nearby city of Kaiserslautern. She so did, and a couple of weeks later a she was diagnosed with Alpha-1 Antitrypsin Deficiency. A few weeks passed while processing this new information and she then decided to do what she so often does; she buckled up for the ride and decided not to be beaten! She started researching about the disease and treatments, and knocking on doors to find the best specialists that could help her. On 24 May, 2012, she received her first infusion of Prolastin. “It was like someone switched on the light for the first time in my life”.

karen-s-3Being used to severe asthma attacks daily, later several times per week and being rushed to hospital every three to four weeks, she and her husband started counting weeks since the last occurrence. Then they started counting months. And that turned into years. The Prolastin treatment did not cure her condition but it stabilized it and allowed her to live somewhat normal, and let her go back to her beloved sports.

Together with her husband and two friends she did her first 3k race in Oslo, in Sept 2013. The following year she was back to do it again, with five people on the team this time, and doing both 3k and 10k. In 2015 they had 10 people on the team for 3k and five for the 10k. Their team – Alpha Warriors – was then asked by the Norwegian Alpha Association to assist them in recruiting people; and as a result of their efforts, this year at least 30 people will be participating in the 3k race. Many of these people have respiratory problems and felt unable to do this 12 months ago, but after signing up they’ve slowly started training. Walking just one more step every day. “That’s what it’s all about”, says Karen. “Not beating any records, just yourself. Getting out of breath due to exercise is not dangerous. It makes you stronger, and is good for you in every way”. Karen herself is also following up this year by doing a half marathon (21k), immediately followed by a 10k. Together, these distances will become her own “Karen’s triple”.

But it doesn’t stop there for Karen. In 2014 her coach asked if she had considered powerlifting as an alternative.  It was not quite so endurance dependent and therefore possibly easier for her. When she first started she was unable to get the bar off the floor. Without added weight, this bar weighs 20k/40lb. But she approached it systematically, adding weights in small increments, setting herself targets a year ahead. She is now deadlifting 110kg/225lb, squats with 90kg/200lb, and is heading for the national championship in 2017, competing with ablekaren-s-4-bodied athletes.

In Aug 2016 she participated in the World Strongest Disabled Man in Manchester, UK. This was an historic event, as it was the first time in history a women has participated at this level. In addition to Karen, Vicki Farrow from Australia participated in the women’s section. After a spectacular day and fantastic efforts, the more experienced Mrs. Farrow took 1st place, only four points ahead of Karen. But together they wrote history, and are officially the two strongest disabled women on the planet.

So does it stop there? Not for Karen. In 2015 she applied to the I Am Adaptive organization and was accepted into their I Am Adaptive Compete Team for 2017; a team of 24 adaptive athletes from
around the world that competes in various disciplines. Karen is the only one with respiratory problems. Shortly before Christmas 2015, she was also approached by the O2&Cie, COPD world cycling team, and was asked if she would like to become part of their team. Karen humbly accepted right away, and then included cycling into her exercise regime.

As if all this wasn’t enough, Karen really enjoys mud and obstacle races like Tough Mudder or Spartan races. These cause a different type of challenge, as she need to carry oxygen bottles with her and keep her nose hose clean from dirt. But according to Karen, this is all about adaptation and willpower.

Karen’s road to her current state has not been easy. A lot of tasks that most people find relatively easy become very difficult when you cannot breathe, and a lot of energy is used just to breath in order to keep going. She’s also had to undergo three major back operations as well as two knee-operations over the last four years. All of these things have set her back, but her strong mind and determination has brought her back up again . . . and again. “I cannot just sit down” Karen says. “By exercising I keep my muscles and lungs in as good shape as possible, and overall that makes my life easier, my health better and my life longer”.

Karen is on social media a lot, showing what she’s doing and giving tips and help to others. “I don’t like the focus on myself” she says, “but I’m doing this in the hope that it will bring others out of karen-s-6the chair. I’ve seen what exercise has done to my own health, and I’ve seen what it’s done to some of my friends. And I’ve got no doubt that it helps. And everyone can do it! It’s not about setting world records or going to a fancy gym. Everyone can take that extra step every day, or do some simple exercises holding on to a kitchen chair. Adaptation is the key, find your own way and do something!”

“It’s too late for me and many of my peers” Karen says, “but we owe it to the children and future generations to do what we can to work for a cure”.


Let’s Talk! with Karen Skålvoll

I’d like to say “thank you” for joining me in the talk about exercise! As you can see I take it to the extreme, but that’s not what matters.  What matters is for your to do what you love doing!  What really gets you moving?  Hiking?  Group workouts? Dancing?  So let’s start talking about your favorite types of exercise in the discuss below.


 

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