How Cool Are You?

Summer is fast approaching, so now is a perfect time to remind everyone about MSAA’s Cooling Program.

As the heat starts to build, so do requests for this free MSAA service, so please place your order now before the summer rush. Please know that there is a five-year wait period to reorder any cooling products if you have already received items through the MSAA Cooling Program.

You can download the MSAA Cooling Program application or call MSAA at (800) 532-7667, ext. 130 to request an application by mail. Have a cool and fun summer!


Not eligible to apply for MSAA’s Cooling Program? The following Stay Cool Tips can be used to help fight the heat:

  • Portable or personal fans are an inexpensive and quick way to cool the body. The fan helps to circulate the hot air and move it away from the body.
    • Try putting a cool rag in front of the fan to circulate the cold condensation from the rag.
  • Be mindful of clothing choices. Wear lightweight and loose clothing that allow for air circulation.
    • Embrace light colors. Dark colors absorb light and heat, light colors reflect light.
  • Search for indoor activities in local shopping malls or stores where air conditioning is always free.
    • Window shopping at the mall or a mid-day matinee at the movie theatre is a great way to take advantage of the often cool air provided at these locations.
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Summer Heat: The Enemy of the MS Patient?

By: Meagan Freeman

Before my diagnosis, the blistering sun of the summer season was my best friend. I was a swimmer, wake-boarder, and sun worshipper. I enjoyed my teen years, soaking up the rays in the California sun, trying to get a nice tan and reading magazines with friends. The hotter the better was my attitude! Boy, have things changed since my diagnosis in 2009.

Now, I have had to accept that the heat is no longer my best friend, but rather, my worst enemy. The heat of summer can be an incredibly challenging thing for those with MS, and it can lead to staying home alone while the rest of the family enjoys the beach, pool, and outdoor summer activities. For several years, I felt depressed about my situation. I had several relapses each summer, and my family members were enjoying my formerly favorite activities while I stayed home on the couch in my air-conditioned home, a virtual prisoner.

After several years of this seasonal imprisonment, I began to search for ways to beat the heat, and still enjoy family time outdoors. There are many options for combatting the summer heat, and I want to share some ideas for other individuals struggling with this issue. Fortunately for us, cooling technology has dramatically improved over the years. I always avoided cooling vests, merely because of vanity. I did not want to be seen with a bulky, unattractive cooling vest; but fortunately we have some wonderful, stealth options now.

The key is to keep the core temperature at a normal level, and through cooling technology, individuals can enjoy the summer days without experiencing flares and relapses caused by the heat. Heat leads to increased inflammation, which we need to avoid at all costs. Fortunately, simple cooling products can achieve the goal of maintaining a normal core body temperature, despite warm days.

MSAA has a wonderful program, offering free vests and cooling products to individuals who qualify for the program. The link for the MSAA cooling vest program is: https://mymsaa.org/msaa-help/cooling/. There is a short application to fill out, and this program can offer a vest to qualified patients at no cost. For those who may not be financially eligible, there are several other companies offering these types of cooling products. A good cooling vest can mean the difference between missing out on family activities, to being an active participant.

In addition to these products, I have found several MS vacation organizations, including the “MS Cruisers.” This organization offers cruises to many ports of call around the world, specifically tailored to meet the needs of MS patients. “This cruise is open to all MS patients, family members and friends who share an interest in the MS community, believe that health and fitness are powerful tools for overall well-being and independence, want to travel and interact with others who are facing the same challenges; and are aiming for the same goal of enjoying life to its fullest as they go through the process of adjusting their lifestyle to best suit their constantly changing needs.” (MS Cruisers.com, 2015.) Consider checking out this site for many options for amazing summer cruises. The site is located at: http://mscruisers.com.

I believe that the key to finding happiness and acceptance during a life with MS is to continue to enjoy all of the activities we enjoyed before our diagnosis. Through the use of simple cooling technology, and finding the right vacation options, we can continue to participate in life, enjoy the sun, and feel as “normal” as possible. If you find yourself imprisoned at home in the AC all summer, consider reaching out and trying one of these amazing programs. This can be your ticket to a wonderful, active summer season. Go enjoy it!

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

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6 Ways to Support the Multiple Sclerosis Community

Looking for some creative ways to support individuals living with multiple sclerosis (MS)? In the following list, we’ll show you six different ways you can help MSAA improve lives today—without breaking the bank.

AmazonSmile

1. AmazonSmile— AmazonSmile is a great way to support the multiple sclerosis community without spending extra money. Simply select the Multiple Sclerosis Association of America as your charity of choice, and Amazon will donate 0.5% of the price of your eligible purchase to MSAA! Click here to learn more or to make a purchase.

ebay-giving-works

2. eBay Giving Works— Do you have some things lying around the house that you’d love to sell on eBay? If so, you can choose to donate a portion of your sales to MSAA. Visit eBay’s Giving Works website to learn more.

3. Counter Punch Wine— Calling all wine lovers! Purchase wine bottles by using MSAA’s promotional code and receive a 10% discount! The best part? MSAA will also receive 10% of your purchase—helping us to continue improving lives today for people living with MS. Please visit www.counterpunchwines.com and enter the promo code: MSAA

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4. CafePress— Get all your MSAA and Swim for MS swag here. Everything from bags and water bottles to t-shirts and bracelets make great gifts. Check out the full inventory.

*We’re sure you’ll love our shirts, but we can’t promise you’ll look this cute wearing them.

5. PuraVida Bracelets— Help us raise awareness of multiple sclerosis by purchasing an MSAA bracelet from PuraVida. $1 of each bracelet purchased will go directly to MSAA. Visit PuraVida’s site to learn more.

6. Host a Pool Party—  Now that summer’s here, invite your friends and family to the pool and have a Swim for MS themed pool party! Provide games, snacks, music, and ask for donations at the door. Your only pool party requirements for this easy event are fun & sun! Email swim@mymsaa.org to start planning your event.

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However you choose to show your support for the MS community, MSAA would like to wish you and yours a safe and enjoyable summer. If you or a loved one struggle with MS symptoms during the summer heat, please visit our website to learn more about MSAA’s Cooling Program or call MSAA’s Helpline at (800) 532-7667 ext. 154.

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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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MSAA Attends 2014 Consortium of Multiple Sclerosis Centers

Several members of the MSAA team traveled down to Dallas, Texas last week for the 2014 meeting of the Consortium of MS Centers (CMSC). The meeting had approximately 2,000 registered participants (the largest CMSC ever) ranging from doctors, nurses and researchers, to nonprofit organizations like MSAA. CMSC Booth

MSAA set up our booth and reached out to attendees to try and ensure that providers are aware of our services and can refer to them as needed.

Some of the partners MSAA works with were also in attendance, including the vendors who work with MSAA on our Cooling program:

Steele Booth

The annual CMSC meeting is one of the best opportunities for education, sharing, and collaboration for professionals who serve the MS community. MSAA staff attended a number of helpful classes, lectures, and interactive sessions on everything from research and study updates related to causes and treatments to efforts to improve quality of life and comprehensive MS care.

Stay tuned to MSAA for more information and knowledge learned at the 2014 CMSC.

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