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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Greetings from the Midwest!

I’ve hosted many educational programs over the years, where I have had the opportunity to meet many wonderful people, who have enriched my life.

In these meetings, a common theme has emerged – Attitude. Presenters often speak to the importance of a positive attitude. It can have a profound impact on how we feel and handle the challenges we face each day.

One thing I hear often in the field is how frequently our clients take on a variety of challenges with a positive outlook.

One person who stands out is Dan, an MSAA client, that I met at a program. He shared his own story of overcoming obstacles with gusto and motivation. There are many individuals like Dan who come to our programs and share their struggles, as well as, their triumphs. These interactions are what make my work in the field so inspiring.

What a week in the Midwest! There were several programs held June 17-22 where clients had the pleasure to listen to prominent MS medical professionals in Michigan, Ohio, and Wisconsin. Each presented his approach for managing MS symptoms and improving quality of life. MS clients, family, friends, and caregivers were inspired. All attending learned much about the importance of nutrition, exercise, and appropriate medications. Many practical tips were discussed.

At one event in Wisconsin, I had the pleasure to meet Cheryl Vanderloop, MSAA’s Artist of the Month for June. She attended a program and introduced herself to me. She is very inspiring. At the end of the program, I surprised her by opening up our website via a wi-fi connection, where I displayed her work and introduced her to the many in attendance. She received a resounding round of applause. Her smile was infectious.

I urge all of you to attend our educational events. They’re fair, balanced, and lots of fun. Please check out MSAA’s Calendar of Events for a program near you. Also, if you have an idea for program topics please leave a comment below!
I look forward to seeing you during my travels throughout the great Midwest!
Smile!
Scott

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Preparing for a Doctor’s Visit

Okay, so we all go to doctor’s appointments… and we have to get there early, in order to fill out paper work… and while we’re filling our paper work in the doctor’s office waiting room, we have to try and ‘remember’ everything that we need to write down for the doctor.

So I’m going to share some things that I do, in order to prepare for a doctor’s visit… without forgetting information that needs to be shared.

For starters, I keep a journal. In my journal I keep note of any changes in how I’m feeling or how I’m reacting to medication. It’s also very handy, when I need to write down a question I want to ask my neurologist, and if I don’t write it down right then… I’m going to forget, even if I tell myself that I won’t.

Something I always have on me when I leave the house, (as well as at home saved on my computer), is a medication list. This way, if something was to happen and I have to go to the ER or anything like that, my medication list is always with me.

I can also say that I would be completely lost, if I didn’t program alarms on my phone for upcoming appointments, and to even take my medications! Yeah it’s annoying, but I don’t forget!

Having a list of my medications as well as my journal of how I’m feeling and how I’m doing on medications, etc., really helps when I go to see my neurologist. It also cuts down time that I have to fill out paperwork, which can sometimes be troublesome as I also have issues with Upper Limb Spasticity (in my hands) mainly in the summer months, so it’s not always “easy” to fill out paperwork.

One of the benefits  from keeping things written down  in my journal is that, my neurologist can see what triggered me not feeling better… like I stated earlier, my spasticity gets worse when it’s hotter outside, so I know what has caused the increase in my spasticity. (Mind you, I live in Central Texas, and it’s almost always hot here… so let’s just say “hotter”… like today’s “Real Feel” is 102 Degrees Fahrenheit.)

Now, I don’t carry around a small notebook with me anymore, but I do use my phone to keep notes on how I’m doing. You have to enjoy and embrace technology these days, as the famous saying goes … “There’s an APP for that.” (MSAA does have a mobile phone app, My MS Manager, which offers a journaling feature) It’s all true.

One last tip, if you’re the type of person to forget things easily, like I am see if your doctor would mind if you brought a voice recorder to your appointment. This will allow you to  play back the visit and conversation to yourself when you’re at home. This is especially helpful if your doctor answered some of the important questions you had been waiting to ask.

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Happy First Day of Summer!

While for many the “unofficial” start of summer is Memorial Day weekend, today is the summer solstice, which is the astrological start of the summer season. Typically this is the longest day of the year. This doesn’t mean our day has more than 24 hours in it – we just have more sunlight than any other day.

So what better way to enjoy all that sunlight than to jump into the pool for Swim for MS?!AWP_2012-MissyFranklin-7816

For those of you who do not know, Swim for MS is MSAA’s signature volunteer initiative which allows individuals to create their own swimming fundraising event while recruiting online donations to support MSAA’s mission of improving lives today.

How can you Swim for MS?IMG_5562

  • Host a summer pool party on the weekend!
  • Set a goal to swim 500 laps throughout the summer to raise $1,000!
  • Create a pool volleyball tournament with your friends!
  • Host a July 4th Pool Party
  • Participate in Swim for MS and pledge to swim 100 laps and improve your fitness by the end of summer!

For more information on how you can Swim for MS, please visit swimforms.org!

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Highlights from the CMSC and ACTRIMS Cooperative Meeting (2013)

MSAA’s article summarizing highlights from this year’s Fifth Cooperative Meeting of The Consortium of Multiple Sclerosis Centers (CMSC) and Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) is now available. National and international MS experts attended this exciting conference, where the latest findings in MS research, treatments, symptom management, and patient care were presented.

Topics highlighted in this article include:

  • new and experimental treatments for MS
  • pregnancy information for women with MS taking disease-modifying therapies
  • emotional and physical findings in MS
  • and much more!

Please be sure to take a look at this article that covers many important topics presented at this unique meeting.

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National Fruits and Veggies Month

veggiesJune is National Fruits and Vegetable month. While we should be eating fruits and vegetables every month out of the year, June is merely welcoming back the garden-fresh produce that we’ve missed all winter long. The biggest part of eating right for summer is listening to what your body tells you about what it wants to eat. As you approach these summer months, do it with fruits and vegetables in your belly and in your fridge. Stock up on vegetables rich in color. Maybe have a bowl of fruit for a snack instead of chips. Encourage your friends and family to join you in your venture towards a healthier lifestyle!

Cantaloupe, watermelon and tomatoes are great fruits to help you stay hydrated. Great summer vegetables include summer squash, sugar snap peas, corn, bell peppers and onions. Eggplant, zucchini and green beans make a great source of dietary fiber.

fruits and veggies

-Broccoli is a nutritional powerhouse: It is full of vitamin C, calcium, fiber, and vitamin A.
-Carrots are a good source of fiber, which helps to maintain bowel health, and aid in weight maintenance.
-Watermelon, which is especially terrific this time of year, offers a juicy, sweet taste and high water content, while packing in antioxidants, vitamin C, and potassium.
-Grapes aid in the maintenance of healthy blood pressure. Eating the whole fruit instead of consuming the juice contains the added benefit of fiber.

Tips for your wallet: Fresh produce is more affordable when it is in season. Also, look for weekly specials on fresh, frozen, canned, and dried fruits and veggies. At a restaurant, always ask what vegetables, including salads, are available as substitutes.

What fruits and veggies will you be adding to your diet this June?

watermelon

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Work, work, work…

In today’s world, work tends to be one of the main focal points of everyday conversation. What work you do, how long you’ve been doing it, and what work you hope to do in the future become areas of focus. Therefore it can be difficult when some of these conversation starters touch on a subject that’s a little less defined for some people, especially those having challenges in a job position due to a disability.

Employment concerns and issues can arise for all individuals within the workforce, and when you throw a disease like multiple sclerosis into the mix these issues can cause frustration and confusion. Some individuals have difficulties deciding which work arena would be most appropriate for their skill set and abilities, while others question how long they will be able to continue the work they are currently doing. These are all relevant and important questions to consider, as many find themselves faced with these thoughts. What’s important to know is that work issues are something you can discuss with others so you are not faced with these questions alone. Your doctor, healthcare and social work professionals, family, friends and other resources may be able to assist in this process.

There are also other outlets of information and resources where one can possibly find assistance with employment issues. A Vocational Rehabilitation office is a resource throughout each state that is designed to assist those with disabilities on information and resources regarding employment changes. There is also a resource called the Job Accommodation Network, www.askjan.org that can offer information regarding workplace accommodations which can create greater accessibility to those with disabilities in the workplace. If you’re experiencing workplace issues you’re welcome to call the MSAA Helpline at phone (800) 532-7667, ext. 154 or email us at msquestions@mymsaa.org. Again, though employment issues can be challenging and create many difficult questions, there are potential resources to help you along the way.

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Tana Campbell’s Race of Hope – Part 3

By Tana Campbell

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I decided to participate in this half marathon at my son’s urging. It was his idea totally, but it gave me a feeling of worth and something to look forward to. We made MSAA the beneficiary charity since I have multiple sclerosis (MS), and with lots of support we were able to raise over $4,500 to donate to a worthy organization. The race was a test of endurance and perseverance for both my son and I. My greatest fear was having muscle spasms in my leg; but despite the long ride, rough spots, bumps and elevated bridges, I came through the experience unscathed. I had no aftereffects other than being slightly sore the next day, and I was probably in better shape than my son and those that ran with us. It was an enjoyable ride, something I wouldn’t have gotten to do or places I wouldn’t have gotten to see if it hadn’t been for my son’s willingness to push me in this marathon. Like many, I deal with MS on a daily basis with the use of a rollator/walker/cane/wheelchair for mobility. Being able to be a part of regular life was a sense of accomplishment and self-worth, a gift to me from my son. He’ll never know how much his selfless sacrifice means, but it was the greatest gift I’ve ever gotten and I’d do it again if the opportunity presents itself!

Watch Tana’s race video:

Read Parts 1 & 2 written by Tana’s son, Mark:
Read Part 1 of Tana Campbell’s Race of Hope
Read Part 2 of Tana Campbell’s Race of Hope

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Father’s Day is almost here!

“My father gave me the greatest gift anyone could give another person, he believed in me.”
– Jim Valvano

Happy Father's Day from MSAAFather’s Day is an opportunity to honor the special fathers in your life. You can choose to honor your own dad, a brother, uncle, son, friend or co-worker. While those who believe in us deserve to be recognized every day, on this very special day, we can pause and give thanks.  

Honor these special men with a donation to the Multiple Sclerosis Association of America (MSAA). Your donation will help us to fulfill our mission of improving lives today for the entire MS community. With each gift, you will have the option to send a personalized online card to the person being honored, letting him know of your support of MSAA.  

Your gift enables MSAA to provide vital services and support such as our toll-free Helpline, equipment distribution, MRI assistance, and more.  

“I am brimming with gratitude and appreciation for the generous support of the MSAA for the MRI scan which I received. The scan produced positive results informing my neurologist and me that my condition was stable. This fellow cannot say enough good things about MSAA!”   - GLW, Georgia

Please make your special Father’s Day donation today! Improve lives today by honoring the special men in your life.

Happy Father’s Day!

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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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