Introducing Susan Russo – Artist & MS Conversations Newest Guest Blogger

Posted on July 11, 2016 by MSAA

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

The Best Part of Summer – Barbecues!

Posted on June 27, 2016 by Melissa Young

Summer is finally here! Unfortunately, in most parts of the country, that also means the heat is here too. This can obviously put a damper on the season. But there are many positive, enjoyable things about the summer time. Family vacations. Travel. Baseball games. The 4^th of July. Fireworks. And barbecues!

For me, barbecues are the best part of the summer. Whether I am entertaining or attending as a guest, I really enjoy spending time with family and friends in a relaxed setting. Plus, barbecues can be enjoyed in many ways. My husband and his friends man the grill. The kids play in the pool, play wiffle ball, and create their own games. My mom sits in the shade with her friends and they talk about the “good old days”. As host, it’s my duty to make sure everyone is comfortable and well fed.

In that spirit, here is a recipe for one of my favorite barbecue side dishes: Deviled Eggs!

Easy Deviled Eggs

6 hard-boiled eggs
salt and pepper
2 tablespoons mayonnaise
1 tablespoon yellow mustard
2 tablespoons dill pickle relish (you can also use sweet pickle relish)
paprika

Directions

Peel shells off of the hard boiled eggs and slice in half (lengthwise).
Using a spoon, gently remove the yolks from the whites and place all the yolks in a small bowl. Mash the yolks into small pieces. Add the mayonnaise, mustard, and relish to the yolks and mix until well combined and creamy. Fill the empty egg white shells with yolk mixture and sprinkle with paprika.

What is your favorite food to serve or bring to a barbecue or picnic?

July 2015 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

Posted on July 8, 2015 by John MSAA

MSAA is very proud to present our 2015 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:
David Desjardins – Union, ME

About the Artist:
“I think like most artists here, I am using my artwork to show that even though MS has slowed me down and has limited what I can do, I am proving to myself and others that I am still capable of creating something beautiful and unique. When I finish a project, and my framed painting is hung, I have such a feeling of accomplishment and satisfaction – “I created that!”

I’m not as prolific a painter as I once was, but I find that concentrating and losing myself in my current painting is a great way to spend an afternoon while creating something of beauty.”
Read more about the Artist of the Month

Be inspired – please send an online card featuring artwork by MS artist David Desjardins and spread awareness of MS and MSAA.

Summer Planning and Travel Resources: An MSAA Blog Re-cap

Posted on June 17, 2015 by MSAA

As planning begins for summer vacations or trips, many are left searching or wondering what resources may be available to help with planning. MSAA guest bloggers Matt Cavallo and Jeri Burtchell have written over the years to provide some helpful tips for the travelling MS community.

In Air Travel Tips for the MS Community; Matt, a seasoned traveler, provides his Five Steps to Stress-Free Air Travel for People Living with MS. Matt writes, “Travel is stressful for everyone. Airports are big, busy and fast-paced. Security lines can be long and the thought of standing, unpacking, and repacking at TSA is enough to unravel even the most seasoned traveler”.

Often times the smaller details are those which are overlooked when planning a trip. Those small details such as the size of your carry-on, or the snacks packed in your bag can often make or break a trip. In Jeri’s Summer Travel Tips for Flying with MS Part 1 and Part 2, she identifies some of those smaller details that should be thought of ahead of time in order for smooth sailing….or flying in that matter.

We often learn through the experiences of others. Please share your flying or travel tips in the comments below.

Summertime Memories

Posted on June 12, 2015 by Angel Blair

The summer season usually conjures up warm memories for me (sorry, no pun intended!) of times when things were simpler being young and summer was the best time of year. Growing up, my family used to gather at my aunt and uncle’s house for get-togethers and special occasions, especially during the summer months because their house was attached to a private elementary school where there was a lot of open area. They acted as caretakers to the school grounds so we had access to two different playgrounds equipped with slides, swing sets and jungle gym activities and a large tot-lot for playing basketball and volleyball. We often had family barbecues there and were so excited when the 4th of July holiday was celebrated because we could watch the fireworks right from their porch. These are some of my best memories I hold from my childhood – playing outside with relatives and being with family and thinking the summer should never end.

As we grow older our memories stay with us – as special pieces of time you’ve stored for yourself to take out and reminisce over whenever you’re feeling sentimental, or just want to recall something good. There are certain triggers that can activate these memories – songs, movies, places, things. For me, my summer memories are triggered by the smell of flowers and grass, barbecue grilling – and the charcoal kind, not the fancier gas grill devices seen all over the place nowadays. Rice Krispy treats – my grandmother used to make the best treats for summer occasions. And mosquito bites – I know this one is a bit strange, but those little buggers would eat us alive playing outside during the summer!

The point is, no matter what the memory is or its trigger, these precious fragments of time that represent moments throughout our lives are something to treasure and hold onto with care. They allow us to go back to times we remember fondly and that gives us hope that the memories could possibly be recreated again someday.

What’s your favorite summertime memory?

June 2015 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

Posted on June 8, 2015 by John MSAA

MSAA is very proud to present our 2015 Art Showcase – celebrating the work of artists affected by MS.

June Artist of the Month:
Paula Breiner – Tamaqua, PA

About the Artist:
“I am an MS Survivor. No, I am not cured; it means I live day to day with this disease. I recently took a painting class to help strengthen my hand, to better my thinking and concentration, and because I haven’t drawn or painted since high school back in the 80’s.

I was diagnosed in 2006 with MS. Over the years I have developed more symptoms, and last year I was put on Rebif. I have a very loving and supportive husband whom I will celebrate our 30th anniversary with this November. We have two beautiful daughters and four amazing grandkids.”
Read more

Be inspired – please send an online card featuring artwork by MS artist Paula Breiner and spread awareness of MS and MSAA.

Things to Consider for Summer Traveling

Posted on June 1, 2015 by Angel Blair

It’s here again – the summer season is upon us! Though for some people it actually may feel like it’s been here for quite a while depending on where you live. But the recent Memorial Day holiday really kicked off the start of the season for most around the country. With the arrival of summer some people start making travel plans and agendas for how to spend these months. Trying to schedule a trip can be stressful, and for those traveling with a disability or chronic illness, the planning process can be extra demanding. Ensuring certain accommodations are in place, scheduling stops and making arrangements for accessible travel are some of the necessary steps to take when planning a trip. Here are some things to consider in the planning phase:

Where are you going?

If they are needed – does your destination have disability accommodations? Like accessible bathrooms and sleeping areas, accessible activities/restaurants/shopping/travel routes within the town? It may help to call hotels and destinations beforehand to ensure their facilities meet your needs. This can help to decrease the stress of arriving at your destination and not having what you need to enjoy your trip.

What will you need for your trip?

Packing necessities like toiletries is just one part of the process. Having the appropriate amount of medications/treatments, equipment, and other products is important to ensure you won’t be left without something significant for your health condition while you’re away.

Who can you contact for help?

While planning a trip you will find there are resources available that can help you with the process. For example, you can work with a travel agent who specializes in accessible and disability travel that has knowledge on how to find locations and services that are accommodating for your requests. You can also get in touch with disability organizations and resources in the area where you’ll be traveling for additional assistance regarding local services and what’s available. Websites like Disabled Travelers and Society for Accessible Travel and Hospitality can provide information for accessible travel needs as well.

Do you have plans for the summer? What does your planning process look like?

It’s beginning to look a lot like fall….

Posted on September 17, 2014 by Angel Blair

Cooler temps forecast across parts of the country this week remind us that the fall season is approaching. Cooler nights, falling leaves and seasonal colors like orange and yellow are some of the trademarks of this festive time of year. Though some areas are still consumed by warm temperatures and strong sun rays, it is the time of year where the seasons start to evolve.

For those affected by the heat, fall is a welcomed time of the year that brings with it opportunities to enjoy the outdoors in a more comfortable manner. Sports activities, ball games, gardening and festive fall events are some ways to embrace the season’s change by spending time outside, and to perhaps ‘escape’ from hibernating methods used during the summer months when the unbearable heat was avoided.

Some look at the season change as a way to start new ventures, set new goals, or make plans for the rest of the year. New beginnings can create feelings of excitement and hope as new memories are made and added to those past. Though change can be difficult at times, it’s how you embrace it and make it work for you that matters. How the journey is spent experiencing something new is as important as the destination.

What are you looking forward to this fall?

Summer Reflection

Posted on September 12, 2014 by MSAA

By: Matt Cavallo

For me, having MS sometimes means more sleep. This is especially the case for me with two young boys, who don’t tend to sleep in and have endless amounts of energy. I find that when the seasons turn to fall and the long sunny days turn to long dark nights, I find myself chronically tired and needing to hibernate. When I feel like I need more sleep, I draw on lessons learned from the summer.

This June, my wife and I decided to drive to take the kids to Legoland in San Diego. San Diego is about a five hour drive from my house, so we loaded up the minivan and hit the road for a three day vacation. Prior to that vacation, I put it in my mind that it was going to be hot and that I was going to be waiting in long lines for the rides, but that I needed to give my kids a vacation to remember.

The first day took a lot out of me. The drive was exhausting. Even though the kids behaved and there was only a little traffic, driving that long can be taxing. However, once we got to the hotel, the kids wanted to play. Even though I was exhausted, we met up with friends and went to the beach. I spent the entire time at the beach playing in the water with the kids. After about twelve hours of going non-stop, we went to the hotel and I crashed.

The next morning came too early, but the kids were up and ready to go. I felt like if I could just get a little more sleep, I would have energy for Lego Land. More sleep was not to be had but we spent an awesome twelve hours running around the amusement park, going on the rides and playing the games. The sun was brutal and beat me down as I waited for ride after ride. By the time we got to bed, I was so exhausted that I didn’t think I could possibly pull it together another day.

The next day came and I needed just a little more sleep, but that was not going to happen. It was day two at Lego Land and the kids were ready. It was a repeat of the first day and the kids were having the time of their lives. We spent another twelve hours roaming the park being roasted in the early summer sun. By the time we got back to the hotel, I thought I was going to pass out from exhaustion, but the kids wanted to swim at the pool. So even though I had expended all my energy at the park, I needed to dig down and find the inspiration for one more hour of activities.

While I was sitting at the pool watching the boys swim, I thought that this is what life was all about. It turned out that I didn’t need more sleep. Sure I was tired and the sun and MS fatigue were wearing on me, but I needed to be there. At this moment, having MS meant time with my sons. So many times, I had let my MS fatigue get the best of me, but I fought through it to create memories that will last a lifetime.

As I look forward to the fall season and the long nights, I think back to that summer vacation. I look back at how I was fatigued and didn’t think I would make it, but created precious memories. For me it is all about getting going, because for me getting started is the hardest part. This fall, I am not going to require more sleep. I am going to spend more time with my sons, because that is what motivates me to keep going. What lessons from summer are you going to use to keep going this fall?

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

Keeping Your Cool During the Warmer Months to Help Manage MS Heat-Related Symptoms

Posted on June 25, 2014 by MultipleSclerosis.net

The summer months are upon us, which means warmer temperatures and the potential for a worsening in MS symptoms. Fatigue is one of the more common symptoms of MS, and it can impact a person’s mood, sleep, and overall quality of life.¹ As many of us know, there is a well-established link between MS-related fatigue and heat sensitivity,² so the warmer summer months can be especially challenging for a person with MS.

Last summer, one of the MultipleSclerosis.net contributors, Ashley Ringstaff, wrote about some of her trips and tricks for dealing with the summer heat. Since Ashley lives in central Texas, she is no stranger to brutally hot summers. She also has 2 very energetic children who love being outside, so staying in an air-conditioned house all day isn’t an option, even if she wanted it to be. Ashley’s recommends using cooling products (not just cooling vests), including those that are available through MSAA’s Cooling Program and Polar Products. She also uses an outdoor garden hose mister and outdoor fans when she is sitting on her porch, and she even likes the inexpensive handheld fans when she is following her boys around. She noted that staying hydrated, is of course, also extremely important.

Caregivers also understand the importance of helping a person with MS stay cool to minimize heat-related symptoms. Last summer, Patrick Leer shared his story about making lifestyle adjustments to help his wife during the warm summer months. He made sure to keep a cooler packed with water bottles and a neck cooler that he received at an MS walk. Patrick also mentioned unique considerations for planning a family vacation at the beach – he would book a room with a view of the beach so his wife could stay inside with air-conditioning and enjoy watching their daughter play outside in the sand. They even managed to find a beach hotel with an ice rink, which seemed to be made for families just like theirs!

Because heat can exacerbate MS-related fatigue, we recently asked our Facebook community if they experience more fatigue in warmer months, and how they manage MS-related fatigue. Here are some of the highlights from our community members’ responses:

Managing MS-Related Fatigue in the Warmer Months

Keeping cool using different devices

Soak small towels in water for your neck, face and top of your head and reload it at water fountains or hoses.
Use a cooling vest.
Carry ice packs in your pockets with a travel sized spray bottle full of cold water.
Carry a small damp towel in the spring and summer to help cool your head and face.
Use Frog Togg cooling cloths.
Wet bands that you put around your neck really help; also drink plenty of water, use air conditioners and fans.
Take cool showers.
Some individuals may benefit by wearing long sleeves and a hat when outside. Sweating is nature’s way of keeping you cool, so long sleeves can absorb perspiration and keep you cooler. Limiting time outside to 15- or 20-minute periods with rest in between can also help.

Consuming cold food/beverages

Eating crushed ice throughout the day can help.
Keeping a cold drink with you helps tremendously so you can cool yourself from the inside out. Iced beverages and popsicles help.

Other tools to combat heat-related fatigue

Exercise helps but it is sometimes difficult to shake the symptoms to get up the energy to go exercise.
Acupuncture and reflexology can help.
Try to get as much done in the morning to mid afternoon.
If prescribed by your doctor, taking a medication such as Provigil® (modafinil) that promotes wakefulness can help.

MultipleSclerosis.net moderator, Christie Germans, mentioned that she relies heavily on air conditioning as well, and she’s able to get a discount on her electricity bill due to her MS diagnosis. She recommends exploring your gas/electricity provider’s website for discounts available for medical needs. Multiple sclerosis will likely be listed in the “qualifying medical needs” list. Or, contact your neurologist’s office. You may be able to save as much as 30% on your bill! For her full response, click here.

Do you experience more symptoms in the warmer months? How do you manage MS-related fatigue?

References

1. Induruwa I, Constantinescu CS, Gran B. Fatigue in multiple sclerosis – a brief review. J Neurol Sci. 2012;323:9-15.

2. Marino FE. Heat reactions in multiple sclerosis: An overlooked paradigm in the study of comparative fatigue. Int. J Hyperthermia. 2009;25:34-40.

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