Getting Back to Nature

Did you know that across our country there are amazing State Parks you can visit and enjoy?  What a great way to explore new parts of the country or even a local state park in your own back yard.

NPS-Centennial-ImageNow that summer is here, hopefully you have a little extra free time.  A great way to use that free time is to get out and enjoy nature.  Whether sitting in your backyard or going to a local park, taking in the sights, sounds, and smells of nature can be very relaxing and  therapeutic.

State Parks are also a great place to become one with nature.  While they might be a little further away, they are well worth the trip.

The state park entrance pass system works differently in each state. Many states offer some sort of pass that allows for unlimited entry at most state parks, while others offer park passes on a park-by-park basis. A few states do not charge entry fees to their state parks at all if you are a resident of that state.  Most states even offer a Disability Discount Pass for people who have documented disabilities.   All fifty states are listed below, with a link to their official state park website and information on their state park entrance pass program. Find your state, order an entrance pass, and enjoy unlimited access to the natural beauty your state has to offer!

 

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Summer Love

By Lauren Kovacs

Summer is a double edged sword for many with MS.  Making the monster happy is a battle.  While winning the war may not come until a cure, small victories can be celebrated.

Heat is a battle most of us fight.   Staying cool is essential.  Cooling vests with the ice packs work well.  I don’t enjoy looking like someone on safari suffering from some weird allergic reaction, but it is better than the alternative.  Lumpy ice packs stuffed into a vest are not a fashion statement anyone wants to make.

Stick to a routine, as much as possible.  I know having kids home for the summer is like herding drunken cats.  As a mother of three boys and being a frequent wheelchair user, I am very familiar with the struggle.  Pick an activity indoors, like bowling.  It is cheap and you can bask in the A/C with caffeine and cheese fries. You can still participate from a comfy chair.

Fatigue it my number one enemy.  It cuts me down with one swoop and then stabs me to be sure I stay down.  Coffee and soda are the poison of choice for many.  But, as caffeine is a diuretic and liquids have to exit the premises, these are not always good options for those of us dealing with tight time limits on the bladder.  The caffeine crash is another unsavory blow.

I have found timing is everything.  Time medication and naps to your daily needs.  My secret weapon is caffeine gum.  Chewing caulk-like gum is gross, but it gives me a wee kick without frequent trips to the potty.  Using the potty, for me, has its own gymnastic routine.  It also means using precious energy.  I feel like a gnat in winter already.  I cannot afford to use energy on potty breaks.

Take summer slow.  Summer days drift away so fast, but enjoy it too.  MSers are great at balancing.  Enjoy what you can, when you can and however you can.  Sitting in a lumpy cooling vest chewing caffeine gum is far better than missing out.

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Where Did It Go?

I can’t believe that summer is halfway over! I remember as a kid my parents telling me that time speeds up as you get older and to treasure how summer was. Of course being the precocious child I sometimes was, I would respond ‘Oh please, you’re pulling my leg. Time is still the same no matter what”. But… my parents were right. Time has seemed to speed up and it’s weird but not being in school and having summer break to look forward to, the start of another school year to dread and those 3-ish months to soak up and enjoy as much as possible free afternoons and outings with friends, time and the summer just go running by. Remember when summer was special, it was what you lived all year for? You counted down the days right around Memorial Day. Started planning what you were going to do the first day off, how many times you were going to go to the pool, mall, movies, amusement park, Maria or Tim’s house (insert your own childhood friends names of course). The smell of summer, the warm breezes and long hours of light, it was all you could do to keep yourself in your desk ’til the last bell on the last day of the year. Then summer seemed like this endless thing in front of you.

Nowadays summer is the pretty much the same as spring and fall and winter. Work, weekends, occasional days off. Appointments, errands and holidays sprinkled in. Summer is going by pretty quickly and from time to time I sit in my car after a long day at work, on my back patio on a Saturday morning, or on a walk down some nearby trails and think where in the world did the time go. I know we’ve all heard it before ‘Make the most of the time we are given’ or ‘Stop occasionally and smell the roses’ and they seem like ancient clichés that we smile and nod to when people older than us expel them for our benefit. But truly as someone who is at 31 finally, albeit slowly, learning the value of the time I have, I’m telling you… stop for even a few seconds and really take in the sunrises and daylight that lasts past 8pm, cool breezes on hot days and small moments of reflection in this second half of summer before it’s gone. Slow down for a moment and just… take it in. Take in the here and now, the age you are and where you are. Appreciate the things you have and try not to dwell on the things you don’t. Appreciate the sunrises and sunsets, the ocean breezes off the shore, green leaves building canopies over walkways, the light streaks the sun makes thru windows, the sounds of kids playing without a care in the world. Don’t let time just go whizzing by and before you know it end up realizing that it’s August 31st and then think ‘Where did the time go?’.

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5 Reasons to Give Swimming a Try

Aquatics PhotoNow that summer is in full swing, are you looking for alternative ways to stay cool while getting in some exercise? Head to the pool! Swimming and other water-based exercise can help with many symptoms of MS, including loss of mobility, balance and coordination, as well as fatigue. And the cool temperature of water can help prevent overheating, which can worsen MS symptoms.

Even if you’re not confident in your swimming abilities or you just don’t like dunking your head underwater, there are plenty of other ways to exercise in the pool.  Many fitness centers and area municipal pools offer aquatic classes including water aerobics, walking, and aquatic treadmill.

Swimming is an aerobic activity, so it’s good for your heart and your muscles. Here are more reasons why you should consider giving swimming a try:

  1. Buoyancy: Water supports 90% of a person’s body weight, reducing joint stress, pain, and fear of falling
  2. Resistance: Water-based exercise builds muscle and enhances stability, flexibility, and balance
  3. Pressure: Swimming allows the heart to work with less stress, reducing swelling and pain in lower extremities
  4. Temperature: Water transfers heat energy more efficiently than air, which can help moderate body temperature
  5. Overall Wellness: Socializing at the pool, having fun, and relating to other individuals can have psychological benefits.

Find more tips, resources, and inspiration to get started on MSAA’s Swim for MS Online Aquatic Center at aquatics.mymsaa.org and check out our Aquatic Exercise and MS – Tip Sheet.

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Hot, Hot, Hot

Being halfway through July we can surely say the summer season is in full swing, and for those with MS it’s no secret that the heat and humidity of the season can be a real downer at times. MS heat sensitivity can result in aggravated or worsened MS symptoms and help to contribute to an overall disliking of the summer months. This can be disheartening because many individuals enjoy this time of year, with outdoor activities and events that beckon and get-togethers that warrant much time outside—shame on MS for trying to corrupt this. But there are things that can be done to try and overcome the cruel intentions MS may have during this time of year, and some may already find themselves doing them.

  • It might be tricky at times, but when you can, get outdoors when the temperature is more manageable. Going outside earlier or later in the day/night can help you avoid the hotter temps throughout the day.
  • When possible, engage in activities that are in cooler/air conditioned places. If you have to be outside, try to take breaks in shaded areas or indoors when you can.
  • Wear cooling products like neck wraps or vests that can help to reduce heat sensitivity issues and keep your body temperature down.
  • If you’re not in the mood to travel or go out due to the heat, have friends or family come to you for a visit.
  • Explain MS and heat sensitivity issues to those close to you so they have an understanding of what you’re experiencing and why there may be some limitations during this time of year.
  • Try to stay actively engaged in the activities and events you enjoy during these summer months. Adjusting the timing or setting of your interests or finding new things to participate in can help to combat the heat factors.

There’s a line you can draw with MS when it comes to your likes and interests. If you enjoy the summer season take part in things you’re able to or try new experiences, and let MS sizzle by itself under the summer sun.

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Introducing Susan Russo – Artist & MS Conversations Newest Guest Blogger

By Susan Russo

My name is Susan Russo and I was diagnosed with Relapsing Remitting Multiple Sclerosis back in 2001. I live just outside of Houston, Texas in the town of Pearland. I recall when I first moved here, the local folks said there are three seasons in Texas – Summer, July, and August! And there’s never been a truer statement made. Living in the Texas heat is a challenge for anyone, but when you have multiple sclerosis, a “typical, fun in the sun summer” simply does not exist, as least in my world.

Growing up in Northeast Ohio, my summers consisted of camping in the backyard, catching fireflies, and playing blind-man’s-bluff until midnight. How I remember, the endless days spent swimming in the local pool while munching on frozen Zero candy bars and chasing all the cute boys.

In Texas, my summers are spent primarily indoors, but that is not necessarily a bad thing.

I love my solitude. But I also appreciate being around people and staying active. I schedule my grocery shopping for later in the day, towards dusk, because carrying a few bags from my car to my front door in 100 degree heat can make me feel like I’m going home to Jesus at any moment! Thank you Lord for air conditioning.

I also love to swim. The Pearland Natatorium has an incredible indoor lap pool. My favorite days are when the Houston Texans football team show up for their Spring Training workout schedule. Best day ever! Nothing like beautiful eye candy to keep you motivated! Yup, I still chase cute guys.

Here’s the thing about multiple sclerosis. Just because it’s summer, doesn’t mean you cannot have fun, indoors or out. It took me a long time to understand this simple concept. You just have to choose what is right and most comfortable for you. Work “with” your disease. Not “against” it. Make sense?

Here is what I finally realized:

  • My favorite, year-round footwear are flip flops with glitter
  • I am addicted to binge watching on Netflix, for real, people. ( I think I may need therapy)
  • My Thursdays are spent watching the Blue Bloods marathon
  • I can have all the popsicles and vanilla ice cream cones I want (with sprinkles on top), without it dripping down my shirt and pooling into a huge glob of melted goop, before I even take my first bite
  • I can volunteer for my local community or sign up for interesting summer courses
  • I can see a movie at the local theater with absolutely no crowds, long lines, or someone’s big hair style up-do blocking my view.
  • Did I mention, I can eat all the popsicles I want?

And of course, there is always my precious art. For those who know me, and for those who do not, I am an artist. My creativity is my saving grace, especially during the mundane summer months along the Texas Gulf Coast.

Summer is going to arrive, every year; hot, super hot, or indifferent. That’s a given. But do not despair my fellow MS warriors. The days sprawled outside in my lawn chair, sipping iced tea with lime, under the glorious blue skies and feeling the semi-brown prickly grass under my feet, (along with the mounds of fire ants) are not gone forever.

When autumn and winter arrive in Houston, that is when my true “All Things Summer Event” begins. Just imagine 70 degree days, bright amazing sunshine and no humidity along with crisp, cool breezes that lasts for days and sometimes even weeks. Yes, even weeks.

Oh…and sometimes it even snows. Yup, it snows. My “favorite” time of year, besides summer, of course.

"Seasons of Summer" by Susan Russo

“Seasons of Summer” by Susan Russo

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Why Did I Wait So Long? Considering Advice, Rethinking Success, and Setting Small Goals

By Stacie Prada

Sometimes it seems that advice for better health sounds like we need to do more, be better, and just generally suck it up buttercup.  I’m not impressed by stories of people saying, “If I can do it, anyone can do it.”  It completely ignores the fact that the other person had a challenge and may not have been able to do it at a different phase of their life.  It also may be something that they won’t be able to maintain for the rest of their lives. It basically ignores the individual circumstances of our own physical health, lifestyle and obligations.  We all have different demands and limitations, and we should only compare ourselves to where we are now and where we want to be given our interests and preferences. That said, other people’s stories often inspire and motivate me to take the next step on something I’d like to accomplish.

After my MS diagnosis, I read the suggestions to swim and do yoga.  I realized that I was very reluctant to do yoga, but I didn’t have a specific reason. I’d tried yoga videos, but they didn’t hook me. Later I realized that my reticence was likely because it seemed like it would be admitting that I was giving up on doing gymnastics. It seemed like accepting defeat. Once I went to a yoga class years later, I loved it so much I couldn’t believe I’d waited so long to try it! To be fair, I was busy. I was active doing other things. Life was full and doing yoga seemed like another thing I “should” do instead of something that I would enjoy.

More recently I started swimming, and it took me a while between knowing it was a good idea and actually going to the pool.  My reluctance to swim was more based on proximity, convenience and feeling slightly intimidated about all of the associated unknowns.  While talking with a friend about swimming, I shared that I was starting to think about my exercise schedule as a two week or monthly schedule instead of weekly.  With this approach, I could aim for doing certain activities once every two weeks or once a month.  That goal made it suddenly desirable and motivating for both of us to go to the pool.  By reducing the idea of success, it removed the barrier of over-committing or setting myself up for feeling like I’d failed if I didn’t continue. Once we got to the pool and swam a few laps, we were a bit giddy about how good we felt, what an excellent workout it was, and how well we each slept that night. Again, why did I wait so long to start swimming?

I’m not going to dwell on the past, but I do want to learn from these experiences. If something interests me, next time it might be good to think about the following:

  1. Can I try it once without committing to a regular schedule?  It’s not all or nothing, and it won’t be failure if I decide not to continue.
  2. Do I know someone who does it and will give tips about what to expect? This can help reduce feelings of intimidation or nervousness about new surroundings, people or experiences.
  3. Did I used to do it and enjoy it? If so, why wouldn’t I now?
  4. Do I have a friend willing to go with me? This makes for great bonding and mutual encouragement for healthy habits.
  5. Do I need special clothing or equipment? Try goodwill or other second hand shops for inexpensive gear so that I’m not out much money if I decide not to continue it.

MSAA advises people with MS to consider swimming and yoga for good reasons. They’re easily adaptable to different skill levels and physical abilities. They both are a bit meditative for me, and I’m relaxed even after intense workouts. They work lots of little muscles in my body in a gentle yet strengthening way. Plus, I always sleep better on days I’ve done them. I love when I incorporate good habits into maintaining my health even when it takes me a while. I hope to be able to keep yoga and swimming as part of my ongoing activities even if they’re only a few times a month. That’s still success.

swim blog

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/ 

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Stories to Inspire

11-Year-Old Walker Reynolds Swims for His Mom and Others with MS

Shana Walker

Shana Stern and Walker Reynolds

“I have a child who has had to see his mother in pain, stuck in bed, on medications – because of my MS,” explains Shana Stern of Austin, Texas. “And because of this, my child is incredibly empathetic and compassionate.”

Shana, who was diagnosed with MS in 1999 and recently featured in MSAA’s Art Showcase, is proudly referring to her 11-year-old son Walker Reynolds who embarked on a remarkable and inspiring quest this summer. Walker is using his love of swimming to help raise money to improve the lives of those living with multiple sclerosis (MS).

By participating in MSAA’s Swim for MS fundraiser, Walker has set an ambitious goal of swimming one minute for every dollar donated this summer up to $1,600. Plus, at the end of the summer on his 12th birthday, he will do a cannonball for every dollar donated over his goal.

Serving as MSAA’s national signature fundraiser, Swim for MS encourages participants to set a swimming-related challenge, such as swimming laps over a set time or distance while recruiting friends and family to donate to MSAA in support of their goals. Swim for MS is any pool, any time – how volunteers choose to participate is completely up to them.

“I think Swim for MS is a cool way for kids to be world participants – and actually begin    to make a difference in the world and to the lives of many people,” Walker says of the fundraiser. “When I saw that for $600 I raise, a person with MS who can’t afford a wheelchair could be given one. That really motivated me.”

In addition to swimming, Walker loves art, like his mother, and enjoyed seeing her painting in MSAA’s Art Showcase. “When my mon’s vision got to too bad for her to keep writing, she began to paint. And because she kept dropping brushes, she created her own method of painting, using only her fingers. People in Austin really liked what she does and started buying her pieces. Her painting and art is what keeps her going on bad    days because she can just lose herself in the paints and colors. It was great to see it on your website!”

While Walker continues to hit the water and swim his daily laps, Shana has been actively promoting his amazing Swim for MS challenge to family, friends, and the general   community through emails and social media posts. As one could imagine, Shana’s admiration for her son is immeasurable.

“I am so extremely proud of Walker for trying to do something to help others in the world, especially at his age.  I’m grateful to him for constantly being my inspiration to fight through whatever difficulties I face that day. He gives me reason to keep living.”

MSAA certainly echoes these wonderful and well deserving praises of Walker and his dedication and compassion to help others in need. We greatly appreciate his efforts and encourage anyone interested in helping Walker meet or exceed his goal to please visit his Swim page at: http://support.mymsaa.org/goto/WalkerReynolds .

Stories to Inspire is a regular feature in My MSAA Today, our bi-monthly eNewsletter. Sign up to receive email updates from MSAA to have the newsletter delivered right to your inbox!

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July 2016 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2016-17 Art Showcase – celebrating the work of artists affected by MS.

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.

July Artist of the Month:
Karen Schatz – Atlanta, GA
Shark
Karen Schatz - Shark

About the Artist:
“My first love was art but I gave it up and went to work in legal IT to support my family. After years of horrendous hours I wrote off a lot of my weird symptoms to working such long hours. I went to numerous doctors but wasn’t diagnosed until last year.

Art has helped me find myself again. I can’t always hold the brushes, but when I can paint I always feel more like me.”
Read more

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The Invisibility of MS

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Living with MS can be a daily challenge, even if other people can’t physically see the struggle. The invisibility of MS symptoms can be one of the hardest and most frustrating aspects of living with this condition, so when we shared some of the data about this subject from our most recent MS in America survey, many members of our MS community told us about their thoughts and experiences. Here is what they had to say:

The top issue faced, especially now that it’s summer? Trouble with the heat and the way it impacts your body:

  • My activity is restricted by the heat. Especially today when the temperature will be in the 90’s.
  • I would rate the intolerance to humidity at the top.
  • My speech gets slurry and my balance is off. I get accused of being drunk.
  • The heat makes my head swim and consequently, my balance gets really bad.
  • I have been feeling more and more fatigue due to my body temperature going from freezing to hot. Each time that occurs, I have less energy, less motivation to do something.
  • Summers are the hardest for me!!! The last two weeks have been increased fatigue, less energy, pain, and brain fog! Most people love summer! I used to, but now it’s the time I struggle the most.
  • Severe fatigue & the heat in Alabama are really bothering me!

Fatigue: it’s a huge (and invisible) concern for many:

  • Fatigue especially. It’s like the first trimester [of pregnancy] fatigue times 100!
  • I have fatigue every single day. It’s hard for my husband to understand that it’s every day. I have maybe 5 times a year that I feel like a normal person.
  • Yep, and the lack of sleep because of spasms equals more fatigue.
  • It’s hard for others to understand how you can be so tired doing everyday things. After doing a load of laundry, going grocery shopping and making dinner I am exhausted!

And some other symptoms that can’t be seen but definitely make life more challenging:

  • Don’t forget the bladder and bowel problems.
  • It’s the periodic blindness that sucks for me.
  • And the headaches are brutal.
  • Mood swings are really challenging..
  • The tingling symptoms scare me. I’ve had a couple of really bad relapses and I’m always afraid I won’t feel my body again.
  • Pain needs to be one for me – it’s about 99%.
  • My issues seem to be centered around fatigue, weakness, blurry vision and weird cognitive stuff like memory issues or not being able to think of words, or using the wrong word.
  • My wife, family and friends will never truly understand what it is like to have headaches and other symptoms on a frequent occurrence and why and how it affects my mood, energy levels and potential plans in a day.

Do these responses ring true for you? What invisible symptoms do you struggle with?

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