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

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.

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Summertime Memories

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?

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

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.

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

 Paula Breiner - Sunny Disposition

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.

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Things to Consider for Summer Traveling

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 Access-Able Travel Source can provide information for accessible travel needs as well.

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

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

rsz_young_couple_going_for_a_walk_outside_in_fall_folliage

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?

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Summer Reflection

By: Matt Cavallo

For me, having MS sometimblog pices 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/

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

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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Summer Fun

rsz_young_couple_going_for_a_walk_with_two_young_children_and_stroller

So it’s getting warmer, the sun is out a bit longer in the evenings, and the school kiddies are getting that familiar itch that the school year is coming to a close. Summer is almost officially here! But what is there to do during those long summer days and nights? Let’s be creative. Think outside the box for activities that could be carried out during this time. Too hot to go outdoors? Why not try a museum, the movies, the mall or some other cool, indoor event? Summer travel can be a challenge when it’s too warm, so how about carrying a cool snack with you, like fruit for a little pick-me-up, or wearing lighter layers of clothing to be more comfortable when traveling. Summer nights can be a little cooler than the days, so gardening, attending a sporting event, reading outside or taking a walk during these cooler times can be refreshing. It can be fun just taking a look at the activities going on in your neighborhood; different community events and occasions may also mark these summer days. Take a look at your local church calendar or the community posting board at your local grocery store to get an idea of local events.

No matter the activity, just remember to enjoy the times shared with friends and family, and do what’s fun for you!

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June 2014 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2014 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.

June Artist of the Month:
Jayne Lemli – Sarasota, FL

 Beginner's Mind by Jayne Lemli - send this artwork

About the Artist:

“I am 57 years old, and at age 24 I had some strange neurological symptoms (mostly sensory and balance) suggestive of MS; but there were no MRIs back then, and I went undiagnosed for the next 29 years, with mild sensory symptoms remaining. In 2009, at age 53, I had another episode and was diagnosed via MRI (complete with black holes). I then experienced some other serious health issues, and in January of 2010 I decided I needed to do something for ME.

I had no prior experience with art at all, and no particular talent, but signed up for a watercolor class. I have been taking watercolor classes since, and LOVE it. I have also added kayaking and yoga to my list of passions. It feels great to have passion!”
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Be inspired – please send an online card featuring artwork by MS artist Jayne Lemli and spread awareness of MS and MSAA.

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Making the Best of a Bad Situation

By: Matt Cavallo

In terms of the heat, spring is quickly turning to summer in Arizona. Daily temperatures are already constantly in the nineties, creeping closer to triple digits every day. As a person living with multiple sclerosis, this is a problem. As the heat levels increase, so does my fatigue. Each day for me is becoming a battle of will and determination to accomplish simple, everyday tasks. My refuge from the heat is to hibernate in my cool, air-conditioned house.

Recently, I was at work and received a call from my wife that I wasn’t expecting. She told me that the central air-conditioner in the house went out. She went on to say that the AC repairman said the motor was dead and the entire unit needed to be replaced. The sticker shock of what a new AC unit costs was another blow, but with my MS, there was also no way I could afford not to replace the AC.

As I hung up the phone, I started to feel defeated and stressed. It always seems that just when I am starting to get ahead, I figure out a way to fall behind. As I reflected on the situation, I realized that it was out of my control. So what was I to do now? There are all kind of events in life that we don’t plan for, and this was a big one. I could let the worry, stress and financial considerations of the situation bring me down into a negative place, or I could look deep inside myself and somehow find the positive.

I decided that I was going to be positive. The AC was twenty years old, too small for the house and a real drain on our energy bill. We had talked about replacing it for years and this situation was forcing our hand. When I put it in my mind that getting a new AC was good for us, the negative circumstances started to change. We had a friend that could install the AC for a reasonable price. The vendor didn’t have the AC unit in stock that we purchased, so for the same price they gave us a bigger, more energy efficient unit. That unit then qualified for a $500 tax credit. The best moment, however, was the joy my four year old received as we watched the crane remove the old unit and then put the new unit on the roof. He was so excited to see the construction that it made me excited to share in that moment with him.

When life throws unexpected challenges at you, how do you handle them? You can choose to be negative or positive. I choose to make lemonade out of lemons and then pour myself a nice big glass.

*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/

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