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

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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!”
Read more

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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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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Time to Cool Down – Cooling Vests for MS Heat Sensitivity

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Though spring has just begun for many around the country, some individuals may already
be thinking about the upcoming summer months and what that means – heat! For individuals with MS who experience heat sensitivity with their MS symptoms, the idea of facing the heat and humidity the summer season brings can be stressful. But it’s important to know there are some ways you can cool your body down and feel some relief with those hot and humid days. MSAA offers a Cooling Equipment Distribution Program which provides different ice-pack style cooling vests and accessory options that can be worn on the body for relief from the heat. With differing vest styles ranging from those that can be worn under or over your clothing, and kit accessories that include cooling wrist and ankle wraps, the program has something to fit individual needs. For more information, see the MSAA website at http://mymsaa.org/msaa-help/cooling/.

*Please note the program eligibility requirements within the application.

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Swim for MS News – August 2013

The August 2013 Winner is…
Congratulations Rachel Clift, for being the top Swim for MS fundraiser during the month of July!

Check out Rachel’s Swim for MS page

Tips for the nervous swimmerTips for the Nervous Swimmer:

  • Buy goggles that fit to avoid uncomfortable under-eye creases
  • Build a strong core on dry land; swimming uses every muscle in your body
  • Start by treading water to get your blood flowing
  • Take it two laps at a time, if able to, to develop stamina
  • Familiarize yourself with the breaststroke so you can easily get yourself from one side of the pool to the other
  • Have fun with your swim!

Exclusive Swim for MS swimsuitsSwim for MS Swimsuit Partnership:
MSAA has partnered with HARDCORESWIM to provide exclusive Swim for MS swimsuits! Two different Swim for MS styles are available for men and women! If you haven’t already done so, check out the Swim for MS page on their site and order your suit today before the summer fun is over!

Spread the Word:
Don’t forget to post pictures of your Swim for MS on social media and tag MSAA!

Facebook: facebook.com/msassociation
Twitter: @Msassociation
Use hashtag #SwimForMS

In Other News:
Please visit our Swim for MS News section on SwimForMS.org for more information on our CaféPress site, as well as our Swim for MS partners, Pura Vida and HARDCORESWIM.

If you have any questions, please contact us at swim@mymsaa.org.

Thank you for your support, and happy swimming!

#SwimForMS – use this hashtag when talking about Swim for MS on Twitter!

Tweet about your Swim for MS!

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MSAA’s Artist of the Month for August 2013

Presenting MSAA’s Artist of the Month for August 2013

MSAA is very proud to present our 2013 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 MSAA Art Showcase submissions.

August 2013 Artist of the Month:
Barbara Hall – Jersey Shore, PA

 Seaside by Barbara Hall

From the Artist:

“There are many faces to MS. I am one of those whose problems are hidden. Only my DR and I know what they are. So for the people who I have told, and that isn’t everyone, I am sure that they don’t take me too seriously. But that is ok. I have read that MS is the most misunderstood disease and I am sure that is correct.

I am just getting back to oil painting after many years of setting it aside because of doing other things. But I have found it so relaxing and rewarding for myself, even if no one sees any of my work. This MS Art Showcase is the perfect venue because finally someone else will view what I have completed.”
Read more

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

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It’s that Time of Year Again….

Although the summer season has not officially come to an end, it’s that time of year again that reminds us to try to soak up what’s left of the summer sun. Though it may feel like the height of the summer season is passing, the heat may linger and stay well into September/early October as it has in the past. When this occurs we get to recapture the remnants of summer joys. If you like this season be sure to get out and embrace what’s left, because when you start seeing school supplies and Halloween decorations displayed while browsing in stores you know fall is just around the corner. Although for some the end to summer is a sad occasion, for others, especially those affected by the heat, it is a time well appreciated. So while it is not quite yet the official end of summer, time reminds us that seasons change, so enjoy what this season brings!

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Summer Travel Tips for Flying With MS – Part 2

By Jeri Burtchell

Most people who have MS take medications. Be sure to keep them in your carry-on bag to prevent mishandling or severe temperature changes. Keep a note in your wallet or purse with your emergency contact, medications, conditions, allergies and medical history in case anything should happen away from home.

Pack a sweater in your carry-on. Even if you are traveling from one hot place to another, airports and planes can be veritable iceboxes. Besides using it for warmth, a cushy sweater can double as a pillow.

Pack your own snack. Fruit or nuts, a sandwich or chips, are all going to be cheaper if you bring your own. Airlines occasionally provide snacks, but not always, and if they have snack boxes for purchase you can expect to pay premium prices. The only thing you can’t bring is a drink but most flights offer a free beverage.

Which to choose, the aisle seat or the window? Windows seats have the added benefit of not only providing a view, but a “wall” on which to lean if you tire easily. Aisle seats make trips to the restroom easier. Middle seats, for most passengers,  are the least desirable.

Pack a wall charger for your smartphone in your carry-on. Your itinerary, email and family may only be an electronic device away, but if your battery dies and the airline lost your luggage, you will be cast adrift in an unfamiliar place, unable to access anything. You can usually find an outlet for your charger in any airport terminal.

If you rent a vehicle at your travel destination, ask for one similar to yours at home. Trying to figure out where the wipers and lights are while navigating a strange place just adds unneeded stress.

If you follow these tips, you can avoid unnecessary stress, leaving you free to enjoy your stay. Don’t overdo it, though! Be sure to drink plenty of fluids so you don’t dehydrate, take naps when you body tells you and pace yourself. Make your visit memorable for all the right reasons. Happy travelling!

*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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