Life with MS in Florida – Baby it’s HOT Outside!

By: Jeri Burtchell 

Living with the challenges of MS is one thing, but if you also live in the south, surviving summertime is no small feat. Everyone’s symptoms are different, but here’s a universal MS fact: whatever the symptoms, heat will make them worse.

Having lived in northeast Florida since my 32 year-old was in diapers, I consider myself a southerner, even though technically I was born in New York.

I qualify as a southerner because:

  • I don’t own a pair of boots, but I have more flip-flops than Skittles has flavors.
  • I wait until the weatherman says a hurricane is at least a category four, and three blocks away before I get supplies.
  • My perfume in the summertime is mosquito repellant.
  • The only candles I buy contain citronella.
  • I take beach photos from the passenger seat of a moving car as we’re doing a drive-by – to prove I really do live in the Sunshine State.

I head indoors before the summer solstice in June, set my air conditioner to “frostbite.” I don’t emerge in the light of day again until school starts in the fall. It’s the only way I know to endure it.

When I was in my 20′s, my favorite hobby was hiking in the Ocala National Forest armed with binoculars and a bird book. I don’t recall the heat ever bothering me.That was before MS and old age turned summertime into my mortal enemy. Now I admire the outdoors on the Nature Channel or ESPN, no longer eager to be personally immersed in it.

But sometimes you just have to brave the elements. Like when your granddaughter joins a local swim team and you go to cheer her on. Turns out you can’t do that via Skype, at least not when you’re the one who’s going to be driving her to and fro.

Her first meet was an hour’s drive out of town. We had to arrive at 7 a.m., and we figured it would last a couple of hours and we’d be out of there in no time–before the coolness of the morning was replaced by scorching heat.

Boy, was I wrong! I have lived here long enough – I should have known better. On top of that, I even wrote an article about how heat affects those with MS. It’s not like I didn’t know.

But what we thought would take only a couple of hours turned into an all day event. By the time she was done and we were headed home, I was dizzy and limp as a noodle. We had to sit in the car with the AC running full blast for quite a while before I could even drive. While we sat and waited for my brain and spinal cord to cool off, we chatted about how much fun she had.

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It was at that instant I knew that any heat-related suffering I’d been through that day was worth having shared the experience with her. As I began to cool off, and my legs changed from overcooked pasta to more of an al dente, I realized I was going to have to come up with a plan.

MS might stop me from my bird-watching nature hikes, but when it tries to come between me and cheering my granddaughter on, I’m putting my numb and tingly foot down.

So I made a list of what might make the experience more bearable for me next time:

  • I’m wearing shorts or a dress. Period. No matter how unflattering my legs might be, jeans are not an option.
  • I’m wearing light, thin clothing and only flip-flops on my feet.
  • I’m bringing a folding chair — despite all the chairs at the facility, there was never one available when I needed to sit down NOW.
  • I’m getting a big floppy straw hat.
  • I’m bringing a personal cooler with a rag down in the ice water that I can wipe my brow or pulse points with occasionally.
  • I’m bringing lots of bottled water.
  • I’ll get myself a spray bottle with a fan built on it.

It never occurred to me to sit at the edge of the kiddy pool and stick my feet in, but I just might do that, too. Of course, by the time I have a huge floppy hat, breezy muumuu covered in Hawaiian flowers, and oversized sunglasses on, my granddaughter might just be mortified at me shouting encouragements from the side of the pool.

But it’s either that or stay home, and since they don’t televise her swim meets on ESPN, I don’t have a choice now, do I? :)

References:
http://www.healthline.com/health-news/ms-multiple-sclerosis-patients-more-sensitive-to-heat-052113

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

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Pushing the Limit When You Have Multiple Sclerosis

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Physical exercise for individuals with multiple sclerosis (MS) has been a hot topic over the last few years. While exercise is always encouraged to promote a healthy lifestyle and to increase physical function, many are still unaware of the types of exercise that can benefit those with MS.

At the Consortium of Multiple Sclerosis Centers (CMSC) conference last month, I attended a number of wonderful programs regarding exercise and MS, affirming the importance of an exercise routine. Many discussions were had regarding the level of physical activity and ways to work and improve the body’s ability.

In a recent article published by the Rocky Mountain MS Center, Dr. Timothy Vollmer discusses the importance of pushing oneself to the point of fatigue once a week during exercise. Similar to how a person might train for a marathon or endurance sport, Dr. Vollmer explains that when exercising using a normal routine, in order to see improvement one needs to push the limit of exertion once a week. By pushing the body’s limit, the body adapts and grows, making the activity less strenuous over time.

In many meetings at CMSC, researchers also discussed the idea of working the body to physical exertion. This is a major change in the minds of those in the MS community. Although the importance of exercise is stressed, research has not yet described the level of exercise that may be effective. I look forward to seeing how the paradigm shifts from “taking it easy” to “pushing beyond your limit” and what the research has to offer the MS community.

It is always recommended to start and continually monitor your fitness routine with a professional such as a physical therapist (PT). The PT can help determine your body’s capabilities and knows what your body’s limits are. A safe and effective fitness routine may help to improve physical function and promote a better quality of life.

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Swim Cap Giveaway – Sign Up to Swim for MS

swim cap giveaway

Temperatures are rising across many parts of the country, and people with and without MS will soon be looking for a way to keep cool or have fun in the summer sun. Therefore, now may be the perfect opportunity to start learning more about MSAA’s Swim for MS initiative.

Swim for MS is a national fundraiser in which volunteers are encouraged to create their own swim challenge while recruiting online donations to support the Multiple Sclerosis Association of America (MSAA) and the MS community. Swim for MS is unique because MSAA does not plan the event – you do! Your fundraiser can be as unique as you want it to be.

Your own Swim for MS fundraiser can take many different forms. Many individuals participate in ongoing Swim for MS fundraisers as well as in one-day events. Some choose to swim outdoors, while others love the convenience of an indoor pool. In addition, many Swim for MS fundraisers involve teams filled with passionate swimmers who all have one goal in mind – improving lives for the MS community. You can see several examples of such fundraisers by visiting SwimForMS.org.

MSAA is also pleased to announce that we are giving away Swim for MS swim caps to every participant who registers for Swim for MS in May! Sign up within the next ten days to receive your official Swim for MS welcome kit, as well as our new Swim for MS swim cap! In addition to the swim cap in May, we have added one more surprise Swim for MS item to registration boxes this month. You’ll just have to register to find out what it is!

Besides the Swim for MS fundraising component, Swim for MS also features an online Aquatic Center, which contains resources for people living with MS who wish to learn more about how aquatic exercise can benefit them. For individuals who may have difficulty with traditional land-based activities, the unique properties of water combined with its cool temperature can create an inviting and sometimes ideal exercise environment for people with MS. Visit the online Aquatic Center to learn more.

Visit SwimForMS.org to learn more

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Announcing MSAA’s New Online Aquatic Center

Online Aquatic Center

MSAA is pleased to unveil the Swim for MS online Aquatic Center at SwimForMS.org – an exciting new resource for individuals with MS and healthcare professionals.

Swimming and other forms of water-based exercise have well-established health benefits for many fitness levels. For people diagnosed with MS, the cooling and buoyant properties of water can create an ideal exercise environment allowing for movements that may not be possible on land, while keeping them from overheating. Research suggests that the benefits of water-based exercise for individuals with MS include improved flexibility, muscle strength, mobility function, psychological well-being, and overall quality of life.

The Swim for MS online Aquatic Center features resources developed to help you learn more about aquatic exercise, including the following sections:

• About Aquatic Exercise and MS – Comprehensive information about the benefits of aquatic exercise and how water-based activities can be adapted to fit all levels of ability Tip Sheetand types of MS
• Aquatic Resources – Tips and suggestions on how to begin an aquatic exercise program and where to find a pool in your area
• Multimedia Center – Inspirational videos of people living with MS who incorporate swimming and aquatic classes into their healthy lifestyle plan
• For Healthcare Professionals – Research findings and supportive information on aquatic exercise and MS for neurologists, physical therapists, rehab specialists, and aquatic fitness instructors

To learn more about aquatic exercise and MS, please visit our new online Aquatic Center at SwimForMS.org!

The Swim for MS online Aquatic Center has been developed through a collaborative sponsorship with Genzyme, a Sanofi company.

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Do something that makes you feel strong

I am not nor have I even been a “gym rat.” The one year in school I did a sport I picked track. Each person had to pick three events. I picked discus, hurdle jumping, and the long jump. Most of my time was spent lounging on the grass with my friends while we talked and let the real runners go around the track (you could only throw discus or do hurdles when the areas were set up).

Nowadays when I read fitness articles about people running marathons or races I am Woman Using Dumbbell To Improve Her Musclesglad for the people involved and happy to hear about them meeting their own goals and objectives. But I know I am no runner and never will be. In fact, running causes me exercise induced headaches.

But here is the important thing, after trying many activities over the years I don’t let the gym intimidate me anymore. While there are things I know I don’t want to do or that don’t make me feel good (i.e. running) I have also found activities which make me feel strong, and competent, and healthy.

Yes, my arms might be the equivalent of small twigs, but put me on the rowing machine and I am a goddess. For 20 minutes on the rowing machine I can glide back and forth and feel l that I am powerful and going somewhere with my fitness.

I have also learned not to let other people’s perceptions impact my choices. For a tiny person I also enjoy lifting. Yes I might max out at lifting 30 lbs., but 30 lbs. for me is really good. I’m not trying to be a body builder, just improve my own health and wellness, so I’m not going to care if I’m the only woman on the lifting machines or that my weight limits are low.

Finding a fitness activity or plan that works for you is the most important thing in maintaining a plan, and by choosing something that makes you feel strong and powerful rsz_shutterstock_4273636 (1)and energized you have a built-in incentive to keep going back.

What activities motivate you?

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IRONMAN Part 2 – Race Day

By Lyle Anderson

The race started out great. But about 15 minutes into the swim portion of the race  a freak windstorm blew in. Winds were in excess of 50 mph. For those of you that don’t know an Ironman consists of a 2.4 mile swim, 112 mile bike ride, followed up by a full marathon. As the winds picked up, so did the waves! I felt like I was swimming in the ocean. We had 4- 5 foot waves. All of the swim support that was in kayaks and paddle boards were having to get rescued, as they were being tossed out of their boats. Swimmers were quitting by the hundreds!! I knew this could possibly be the only chance I ever get to do a full Ironman. So I made a decision to stick it out and finish the swim.

When I got out of the water I was expecting them to tell me good job, but we are cancelling the event. However that is not what they said and I was amazed that I had to get on my bike now and ride in these winds (which were now in excess of 60 mph). As I started riding my bike, I couldn’t help but wish I were back in the water. That swim seemed easy now compared to this bike ride. I had to dig really deep to fight off the battle within my mind to quit. For 112 miles I kept saying to myself I will just keep riding until someone asks me if I want to quit. Since that never happened I just kept of going. I finished the bike portion with only 10 minutes to spare to the cut off.

Now all I had left to do was run 26.2 miles. Believe it or not this was the easy part. I felt surprisingly good and knew at this point that I would finish. It was so refreshing to be off the bike. I wasn’t moving very fast but at this point I didn’t need to. We are allowed 17 hours to complete the full event. I finished in 16 hours and 5 minutes. As I ran across the finish line I heard the announcer say “Lyle Anderson from Hurricane, Utah YOU ARE AN IRONMAN.”  That phrase still to this day rings in my head like it was yesterday.

Because of this I was thrilled to make it to the final round of the Kona Inspired contest, which provides seven slots to individuals with inspiring stories of overcoming personal adversity for the IRONMAN World Championships in Kailua-Kona, Hawai`i.  For those of you who don’t know – the Kona Iron Man Triathlon is  like the Super Bowl of Triathlons. This is an event that the best of the best go to. Qualifying for Kona is not a realistic goal for me to try and achieve at this point in my life.  But through, the Kona Inspired program, which was introduces in 2012, I have a chance to get there and you can help me. Now through July 8th, 2013 you can vote for my video at: http://konainspired.thismoment.com?x=us-en_kona_821_.

Running and participating in Triathlons has opened my eyes to a whole new world of possibilities I never knew existed before. I realize now that anything is possible with a little work and mental preparation.

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An IRONMAN – Part I

By Lyle Anderson

Ironman

I was born and raised in Richland, Washington.  My family moved to Southern Utah in 1993,  where I still live to this day.  I have been married for 16 years and have four beautiful children.  I was introduced to running about seven years ago.  After being diagnosed with MS (multiple sclerosis) on my 30th birthday, I decided I still had a few things I wanted to accomplish in my life while I still have the ability to do so.

When I was first diagnosed I could barely walk.  My legs just wouldn’t cooperate with me. My eyes weren’t working right either which made things even more difficult. When my doctor first diagnosed me with MS she told me I could be in a wheelchair in 5 – 10 years. Looking back I’m sure she was just trying to give me a “worst case” scenario. I was totally devastated! My wife was pregnant with our 3rd child at the time and all I could think of was my wife’s Aunt, who also has MS and has been in a wheelchair the whole time I have known my wife. I had so much I wanted to do still in my life.  I guess this was the kick in the pants I needed to get my life back on track.  I started taking Rebif along with steroid infusions.  After a few weeks the numbness went away and my motor functions improved.

In 2010 with a little motivation from my father-in-law I ran my first full Marathon.  Since then I have completed 7-full marathons, 8-half Ironman distance races, 12-Olympic Triathlons, 7- Sprint Triathlons, 38-half marathons and more 5k’s and relays than I care to list. To top it all off in 2012 I decided to do the full St. George Ironman. This decision wasn’t something I thought I would ever want to do. However, they announced this was going to be the last year for the full race and I didn’t want to have any regrets if I missed it. With the encouragement of friends and family I signed up. The training was way harder than I ever thought it would be. But I took one workout at a time and before I knew it race day was here!

*Tune in tomrrow for Part II of Lyle’s story.

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Staying Active with MS

Usually when we hear “stay active” people are referring to some sort of exercise. But, that’s not what I’m implying when I say it, I like to keep my mind active.

And I don’t mean keep your mind active by stressing about what’s going on in your life or how your MS is affecting you that particular day. I mean, test your brain. Play some games online that really make you think; get  a crossword puzzle book; or you can play games on Facebook, like I do!

However,  if it’s one of those days where you just don’t even want to think too hard, because your head just can’t handle it, get lost in a book! That’s my favorite thing to do! I don’t sit there and worry about what’s going on in my life when I get lost in reading a book that I can really get into.

I can’t even describe how time goes by when I’m doing these things and how I don’t worry about how I’m doing with my MS, or anything else going on in my life. My brain is being active, but not to the point where it’s stressful, it’s relaxing. Something I really enjoy that we do at MSWorld.org is every Friday Night at 8pm ET, we play “Trivia.” One of the chat hosts puts together an hours worth of trivia, and the whole chat room plays.  It’s nothing that is a “competition” or makes you think too hard, it’s really fun and gets you thinking!

Of course, it’s always good to stay physically active with MS… that’s a given, but I like to have a workout session with my brain more often than physical workouts! Needless to say, the only physical workout I can endure with out “over doing” or hurting myself is swimming. And I’m not just talking about hurting myself from doing too much, but I have made a fool of myself at the gym because I’m a walking accident!

So since it’s Summer time, take this time to enjoy and get your brain working, but in a fun way!

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Tana Campbell’s Race of Hope – Part 2

Written by Mark Campbell, Tana’s son

Read Part 1 of Tana Campbell’s Race of Hope

On June 1, 2013, we lined up in the back of the running pack surrounded by family and friends. We all wore the same shirts. There were 13 of us (five running and eight cheerleading), all wearing a bright orange shirt with a while ribbon on the chest surrounded by the phrase, “Fight On and Find the Cure! Multiple Sclerosis!” Prominently displayed on the back of the shirt was the MSAA logo along with some other local sponsors. We were ready, nervous and excited. We saw glances from other runners and spectators. But they weren’t puzzled or condescending looks. They were looks of astonishment and admiration. This was our first hint of just the type of day we were destined to have.

The race started and we were the last of over 750 runners to cross the starting line. Spectators were lined up on both sides of the runner’s chute. We heard their clapping and cheering once they recognized what we were doing. We crested the top of a small hill, turned a corner and were out of the sight of our family and friends. We would see them a couple more times during the race as they drove to a strategic location where we would pass at 3.5 miles and again at 7.5 miles.

Over the course of the next three hours we ran mostly on the Capital Area Greenway which follows a creek. It’s a well maintained and beautiful place to be. It never occurred to me just how much my mother would enjoy being on the Greenway. She never knew it existed and with limited mobility (she told me afterward) she never would have considered the option of experiencing it. The Greenway winds along a secluded area away from the traffic and noise of the city. There are interesting sights, numerous footbridges to negotiate and gorgeous scenery along the way. It is also a heavily wooded area that created a canvas of shade and allowed mom to keep cool throughout the race.

As we encountered the water stops along the route we heard more cheers and kind words from the volunteers handing out water and electrolyte drinks. Our route was an out-and-back course, which meant that runners who were in front of us at the start of the race were now coming back toward us. Most of the runners had no idea that we were even participating in the race because they never saw us at the starting line. I cannot count the number of times these runners clapped, cheered, smiled, yelled, waved, pumped their fists, gave us high fives, etc. It seemed like everyone who saw us wanted to acknowledge our participation. I can only imagine what my mother goes through in her mind when she gets out of the house and other people see her at the store or doctor’s office or in a restaurant. But this day, my mother was a rock star! And everyone wanted to salute her.

As we crested the final hill and made the final turn, there was such a sense of accomplishment for both of us. Mine was a physical accomplishment. Yeah, I ran a half marathon while pushing my mother in a wheelchair. But more importantly to me, my mother’s accomplishment was mental. She showed herself and others that she can enjoy life and overcome challenges. After the race was over and we were hanging out with our friends and family at the finish line, I remembered what a friend of mine who also has MS once told me. She reminds herself daily that she has MS, but MS doesn’t have her. The same is true for my mother….MS doesn’t have her.

If this is the only time we ever participate in a race together then I am very happy and will cherish this memory forever. But something tells me that this won’t be the last time. If my mom wants to do it again next weekend I will be there for her….we may be just a little slower though and I’m sure that is alright for both of us.

(FULL DISCLOSURE ALERT:  I did have to ask for help on that final hill from our running support team. It was a long, steep hill and my legs were exhausted. We estimate that they took turns pushing mom in her chair for about a half mile during the race.)

Read Part 3 of Tana Campbell’s Race of Hope

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Staying Active with MS

My exercising pursuits probably started at age one and a half when my foiled gymnastics routine failed to propel me out of the crib. Already I showed signs of being active and rambunctious and my “antics” did not stop despite stitches from my failed attempt. At age six my mother watched in horror as someone pointed to a young girl, her daughter, about to jump from the high diving board. Finally, at age eight she enrolled me in PAL (Police Athletic League), in an effort to allow me to channel my excess energy constructively.

I continued an active life style throughout my life, until I was diagnosed with MS.

In August of 2009 I was training for my first half marathon when I was diagnosed with RRMS. The diagnosis came as a shock to me because I was not only fit but maintained a healthy lifestyle.  The news, was a shock to me and I wasn’t sure how to cope.

After the diagnosis I shut everyone and everything from my life, including running and working out. I could not envision going for a run and collapsing from an MS episode. I truly had no idea what to expect but I had anticipated the worst of what could happen.  I couldn’t go to the gym and have my ego remind me of what I could no longer do.

As I struggled with the disease I became increasingly depressed. In the past, running would always assuage any crisis I had to face; I no longer had that outlet to release my depression and frustrations.  It was a catch 22 – if I went out for a run I could collapse (in my mind) and if I didn’t I would sink further into an abyss that I had created.

It took months for me to realize that I had hit a wall built not out of mortar but fear and indecision. MS had already proven to me that I would not have the same life that I had enjoyed in the past. So, why could I think that I could easily go back to my “old” form of exercising?   Reluctantly I had to give up starting off at the high diving board and had to wade into the kiddy pool instead.

And so as my frame of mind changed so did my temperament and condition. I started jogging slowly, almost at a walk, and much less distance than I was accustomed to. I had no delusions of grandeur, only of building up my courage and stamina at whatever pace I could manage at the time.

I also changed to a gym that had a pool.  Swimming was an activity that I had not done since I was a kid.  I wasn’t strong but I just wanted to get into the pool and swim a few laps at a time. The warmth of the water me gave me the impetus to stay in longer and achieve a little more each time. There was a familiar and safe emotional sensation that would flood my senses as the memories that I had as a kid, swimming in Puerto Rico and the JCC (Jewish Community Center), would come to the surface.

My legs finally started getting stronger and my attitude shifted to one of jubilance. I became more positive about the future and my life with MS. I realized how much I missed exercising. It had always been such an important part of my life. But more so, the endorphins that were released while I worked out had a positive impact on how I felt.

I also realized that it didn’t take much for me to fulfill the joy that exercising once brought me. It was as simple as exercising with light weights, going for a walk, or aerobic swimming.

I didn’t have to try to set out to break any type of record. I needed to listen to my body when it was telling me that it was as important to exercise my body muscles as it was the brain muscles. If I didn’t use them they would atrophy, as they were already doing. And, when my body was tired I needed to heed and do less.

My “baby step” routine continued until I was finally able to run my first half marathon last year and four months later completed an 817 mile hike through the Arizona Trail.

We all have different compositional make ups. Our MS symptoms are different and so we need to tailor our activities according to our capabilities. Any form of exercise, at our own pace, is instrumental to our physical and emotional and well being.

Please note: If you are looking to start any new exercise routine you should first consult with your physician.

 

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