4 posts tagged “MS awareness”

Going the distance for MS awareness

Posted March 6th, 2017 by

Meet Cheryl (CherylRunner), a marathoner living with MS. Since it’s MS Awareness Month, we sat down to chat with her about what she’s doing to raise awareness: running 7 marathons on 7 continents in a 12-month span. So far under her belt are South Africa, Argentina, Hawaii, Antarctica and Japan, and now she prepares to cross Austria off her list. See what she has to say about overcoming the physical limitations of her condition.

You’ve run 54 marathons and 41 of those have been after your MS diagnosis. How has running changed for you since your diagnosis?

Cheryl Hile MS marathon runner

Photo by Rachel Hatch

Running has given me so much. When I was first diagnosed and depressed, running was my therapy to cope with the overwhelming sadness. However, I started tripping and falling while running. I thought I was tired from overtraining. I soon learned that I was falling because I have a common symptom of MS called drop foot. My running became laborious and depressing. My neurologist told me to lower my expectations and that ignited a fire in me to not give up. I found an orthotist and he fitted me with an ankle-foot orthotic (AFO). It’s made of carbon fiber, so it’s light and flexible enough for running. It is not necessarily made for marathons, per se, but I make it work despite the cuts and bruises. I guess that is a long way of saying that running has made me stronger.

Aside from your custom carbon fiber ankle foot orthotic, what other things do you do to help with your running?

I cross train to help with cardio-vascular fitness. My husband and I ride 20-30 miles along Pacific Coast Hwy very early in the morning (traffic scares me, especially being clipped into the pedals).

I also lift weights. My right thigh is very weak from MS and I can only lift it 3-4 inches off the ground. I do a lot of compensating with my left side when I run. I try to strengthen all of my muscles to try to keep them in balance, but I do have atrophy in my right leg.

In general, what advice would you give for someone living with MS who wants to work towards becoming more physically active?

First, I have to throw in the caveat to talk to your doctor first! Next I suggest setting small, attainable goals. For example, if you don’t exercise at all, make a goal to walk 10-15 minutes, then start increasing by 5-10 minute increments when you feel confident.

My very first running race was a marathon (because I’m crazy). That was a big goal and I attained it, but I suffered a lot at the beginning. My first training run was down my block and I walked back home crying. My husband likes to tell everyone that story! But I kept at it and in 6 months I went from one block to 26.2 miles. It was a slow marathon, but I did it! However, I should have signed up for shorter races first to keep my morale high.

Small attainable goals and small concerted efforts to make change!

Right now you’re in the middle of a big idea you had to raise money for the MS Society. You committed to running 7 marathons on 7 continents in the span of a year. You’ve already run in Cape Town, South Africa; Buenos Aires, Argentina; Honolulu, Hawaii; King George Island, Antarctica; and Tokyo, Japan. Next up are Vienna, Austria, and Christchurch, New Zealand. What’s been your favorite experience so far? What’s been a challenge?

Cheryl Hile MS marathon runner

Photo by Rachel Hatch

I’ve had a lot of great experiences. My favorite marathon so far is Cape Town. The scenery was beautiful, the people were very friendly and even though it is a large international marathon, it felt like a tight knit community. The highlight of the trip for me was connecting with the Multiple Sclerosis South Africa group. They were absolutely lovely and even though our trip was short, we bonded. Meeting people and making friends are my favorite things about my trips. People really make it more special.

The White Continent Marathon was by far the biggest challenge. I was prepared for the cold, but I underestimated the terrain. It was very rocky (from pebbles to boulders) and it was so painful on my feet. I had to walk a lot of it because my right foot kept sliding. I can feel my left foot and use my toes to balance myself. However, my right foot is numb and I cannot move my toes well. That, coupled with a rigid footplate on my AFO, made it hard to keep steady on the undulating terrain. I was sore in places that I didn’t know had muscle!

We’ll be following up with Cheryl once she finishes her final two races in Vienna, Austria, and Christchurch, New Zealand. You can keep track of her progress on her blog!

On PatientsLikeMe

Cheryl talks about having drop foot, something reported by 990 members on PatientsLikeMe. She’s had success using an ankle foot orthotic (AFO) to treat it. Here’s what members have to say:

In fact, members have a lot more to say about this – 101, 941 forum posts worth, to be exact. See what they’re saying and learn more about who’s experiencing drop foot!

What are you doing to raise awareness about MS this month?

Share this post on Twitter and help spread the word.


Myths vs. facts about multiple sclerosis

Posted March 18th, 2015 by

Stop! What do you know about multiple sclerosis (MS)?

That’s the question we’re asking during MS Awareness Month. We’ve heard from many community members that people don’t always get what it’s like to live with MS, and that there’s wrong information out there. So as part of ongoing awareness efforts, we created shareable photos that will hopefully dispel some of the myths surrounding the neurological condition.

There are 13 shareable infographics in total – click here to view the gallery.  Don’t forget to use the #MSawareness hashtag when you post on your Facebook or Twitter. Let’s kick things into high gear and start dispelling myths about MS this month so that everyone is armed with better information all year round.

What’s the community saying?

“The stigma associated with MS far outweighs any benefits that come from awareness, from my personal experience. To be very honest, no one cares unless it happens to them, and people perceive being sick as a weakness”
-MS forum thread

“I have only been offended two times in 20 years by strangers. Family, now that’s a different story – stigma runs rampant there when it comes to MS.”
-MS forum thread

“A society that attaches a stigma to our disease when people fear it or don’t believe it exists, then discriminates against us instead of trying to imagine what our lives are like.”
-MS forum thread

Already a member? Awesome! Click on any of the links above and join the conversation. Not a member? No problem. Sign up for free here and then add your thoughts. Every voice is welcome.

Share this post on Twitter and help spread the word for MS Awareness Month.


“Post-MS, I’m one of the strongest people I know” – PatientsLikeMe MS member Jazz1982 opens up about her experiences with MS

Posted March 20th, 2014 by

PatientsLikeMe members are located all over the world, and this month, Swedish MS advocate Jazz1982 shared about what life is like on the other side of the Atlantic. She spoke in detail about the stigma surrounding MS, her exceptionally strong mindset and her experiences with Betaseron, Tysabri, Mabthera (Rituximab) and a few other pharmacological treatments.

 

You mentioned you hail from Sweden – a lot of the MS community has been talking about the new drug Lemtrada that was recently approved over in the E.U. What have you heard about it?

Well, I’ve been living in Sweden for the past 4 years, and I’ve only heard about Lemtrada through my neurologist when he mentioned the list of viable medications I could switch to, and he did not recommend it for my case. It was shown to cause an increased amount of infections due to a compromised immune system, and I already had an almost chronic UTI while on Tysabri, so we voted it out.

MS awareness is a big part of your life – have you connected with any fellow MS advocates in Sweden or the greater E.U. through PatientsLikeMe?

MS awareness is a very big part of my life, but also as a side note, I have to say that I learnt not to say I have MS. The stigma associated with MS far outweighs any benefits that come from awareness, from my personal experience. To be very honest, no one cares unless it happens to them, and people perceive being sick as a weakness, when in reality I was very fragile and easy to break before the MS. Post-MS, I’m one of the strongest people I know, and I take things very differently from how I was before. Priorities change, your body changes, you change and become flexible; this is to deal with everything MS might throw at you because it spills into your everyday life, and being flexible just becomes second nature to you. Things become far simpler than they were before because you have bigger problems than your annoying boss, your untamed hair or not having a boy/girlfriend. When you have MS or any other chronic disease, your national anthem bellows the sound of constant loss, and it hurts to hear your name in the song. You have a choice to let the so-called bull grind you to a pulp or see what you have and use it to make the best out of the situation. I always get the ohhhh you poor thing look once anyone finds out that I have MS, and quite frankly, I’m not interested in their pity. What I am interested in is leaving the world a better place than when I came in, and either you support me or work with me, otherwise, I don’t have the patience to deal with pre-conceived negative notions that people have around any sort of illness.

On the more positive note, I love it when people ask questions about being sick. The other day I had a family member ask “how is it that someone who can only walk with a walker be happy?” When you have lost everything (your marriage, your career, your friends, the life you once knew) and you learn how to walk again, it’s the most ecstatic feeling in the world to be able to take a step, completely unaided by another person. Everyone wants to be independent, and when it comes back, no matter what shape or form the package comes in, you love it and you love it intensely. Questions are more than welcome, and it makes me feel good to be able to shed some light on the situation.

It’s a personal choice, and I tried to share it but found it to be an overall negative experience where no one was learning from it, so I chose to mostly keep it to myself.

So, yes I have spoken to others that have MS, Parkinson’s, stroke, etc, in Sweden, though PLM is not as popular here than in the US.

Many members have shared that they had trouble finding a diagnosis. Was that your experience, too?

I have exhibited symptoms since I was 8 years old, which is highly unusual, but my MS went into full swing in my 20’s and I wasn’t diagnosed for 2 years while my condition rapidly deteriorated. A diagnosis was both a relief and a shock to my system. Everything comes in a 50-50 coin flip, one way it’s a disaster and another it’s a burden off your shoulders. It’s not something you could have evaded if you just ate and exercised right, you get to hold up the MS card and say “see, I knew I wasn’t insane! I knew I wasn’t imagining it, it actually has a name.” The human brain is the ultimate categorizing machine, you need to categorize it for yourself and so others know how to deal with you. Once the category has been chosen, then the mission begins of going through the stages of mourning the loss of the old you and embracing the new you. I found that to be the easiest part, the hardest is seeing who gets on board with you and who doesn’t. It’s kind of like fast forwarding through a tape of your life while everyone else is still in “normal” mode, it’s painful but you learn a lot. It’s an experience that no one welcomes at first, but you learn to see it as a long-term benefit! Similar to the saying the truth shall set you free, but it will piss you off first.

Can you share a little about your treatment experiences with MS? Have you ever changed treatments? And if so, why did you decide to?

I first started out with Betaferon (Betaseron to US readers), which was a painful 3 years, but I didn’t have much choice when it came to medication back then. As it turns out, I was allergic to interferons, and as you may know, medications are determined by a trial and error method, which can be catastrophic. My slow decline into what I see as losing my humanity began and didn’t stop until I met my current neurologist (whom I love to pieces), when he immediately took me off the Betaferon and switched me onto Tysabri. I was one of the lucky ones, it was nothing short of a miracle. I suddenly went from not being able to see, feel or think to leaps and bounds better (along with rehabilitation) when I earned my Master’s degree, and I was able to walk again and simply gained control of my body and my life in the process. It was tough, but to see your brain functions come online one by one is an honor in itself really, and well worth it. After 2 years on Tysabri, we did a blood test, and my JCV antibodies were too high for comfort, so I had to switch.

My neurologist follows protocol but he also listens to my reasoning, and we had a long discussion about my treatment choices. Protocol states that I try Gilenya after Tysabri, but after doing some research I found Mabthera or Rituximab. Now, Mabthera is also a chimeric monoclonal antibody that depletes B cells, while Tysabri depletes T cells and a significant link was found between the depletion of B cells in regard to T cells. In other words, you deplete B cells then you deplete T cells in the process while not compromising your immune system. Now Mabthera is used in Rheumatoid Arthitis and Non-Hodgkins Lymphoma, but it’s off label use was for MS. Gilenya uses a different method all together and to my mind, why try something when you don’t know its efficacy on your body, while you already know what Tysabri has done. So, after a long talk and seeing the numbers for all the medicines’ efficacy, we chose Mabthera. My neurologist was supportive of the decision, made and prescribed the treatment and explained it fully. He even gave me a hug at the end of it. 🙂

I can definitely say Mabthera was even better to me than the Tysabri ever was. I am currently on Mabthera and it may sound scary (most of the MSer reports I read were that of impending doom) but I asked my nurse and neurologist about it and they said that MSers barely noticed anything at all. I am currently on Mabthera  (just started it 3 months ago) and would say if Tysabri worked well for you, I highly recommend it if your doctor gives you the green light. It may sound daunting to try an off label drug but I didn’t have a single symptom on it.

As I’m sure you all know, switching medications was not easy and I had prepared for the worst but went in hoping for the best. Usually, if anything is to go wrong, it will during the first hour of the infusion. I went in prepared with my anti-histamine (some people experienced allergic reactions) and my Tylenol but the hospital staff gave me that plus a small dosage of cortisone (5mg) but never did I even dream that I wouldn’t experience even 1 symptom. I get an infusion every 6 months, and during the infusion the nurse checks your blood pressure every 30 minutes and increases the drop rate. The infusion lasts 5-6 hours (I am sometimes longer since my veins see a needle and hide like they saw the abominable snowman, and it takes an average of 3 times to get a vein, my record is currently at 6). Clinical trials and previous MSers have used it safely for up to 8 years, which to me is pretty impressive.

You share a lot about MS research in the PatientsLikeMe forum – how do you see sharing info like this, and your own health experiences, helping others like you?

Numbers are the sexiest thing. I know, people don’t associate numbers and sexy but hear me out. They help me determine which direction to shift to, help others, and they’re the universal bind that holds us all together. I get to make an important choice without the influence of others, unreasonable emotions or illogical judgments. Numbers don’t lie; knowledge is king and with this evidence I can increase my quality of life and succeed at being me, which in the end, is all that matters. If that isn’t sexy then I don’t know what is.


Getting involved during Multiple Sclerosis Awareness Week

Posted March 4th, 2014 by

Did you know that every year, the first week of March is dedicated to multiple sclerosis (MS) awareness in the United States? From March 3rd to March 9th, events will be held across the country to educate people about the four different kinds of MS and how the neurological condition impacts peoples’ lives.

In the U.S., the average person has about a 1 in 750 chance of developing MS. Worldwide, MS affects over 2.3 million people,1 and there are four different types – relapsing-remitting (RRMS), secondary-progressive, primary-progressive and progressive-relapsing. Each kind of MS varies by symptom and progression, and RRMS is by far the most common – 85% of new MS patients are diagnosed with this type. Learn more about the different kinds of MS.

The PatientsLikeMe team got decked out in orange today for MS Awareness Week!

If you are wondering how you can help raise awareness and get involved, you can:

More than 33,000 MS members are sharing their experiences on PatientsLikeMe, and together, we can
advance research and improve quality of life. What are you doing for MS Awareness Week?


1 http://www.nationalmssociety.org/What-is-MS/Who-Gets-MS