Talking with Friends and Family about Multiple Sclerosis & its Symptoms

For this month, we focused our blog around managing MS.  Some helpful tips were provided and the one that sticks out to me was about “asking for help”.  Understanding your limits and what you are able to accomplish in a day is a great way to conserve your energy and focus on what is important.  Often times it is important to involve those around you, but navigating the “how to” is a challenge.

For those who struggle with the symptoms of MS that may not be visible (i.e. fatigue, pain, and cognitive changes), the hidden symptoms of MS, asking for help from a friend or loved one can often be a daunting task.  We frequently hear and read stories from individuals who feel guilty asking for help, because they don’t feel that they “look” sick.  They fear they will be judged in asking for help.

It may be helpful, before you tell everyone about your MS symptoms to think; does this person play a significant role in my life? And, can I rely on them in the future if I need help?  If the answer to both of these questions is yes, then it is time to put on your teacher hat and educate those identified helpers about what types of symptoms you experience and what they may look, or sound like, for you.  MSAA’s The Motivator Winter/Spring 2013 edition discusses may of the hidden symptoms of MS: https://www.mymsaa.org/publications/motivator/winter-spring13/.  This publication can be shared with friends and loved ones to further provide education and information.

Not every person with MS experiences symptoms in the same way, so providing information as to how MS looks and feels to you is very important.  With more understanding and better education, we can hope to reduce the stigma around the hidden symptoms of MS and promote a more positive experience for both yourself and your loved ones.

Please share your experiences, have you had to educate your friends and loved ones about the symptoms of MS?  What has worked for you?

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Dealing with Changes in Weather When You’re Living with Multiple Sclerosis Symptoms

Well, I can honestly tell you that I’m looking forward to the change in weather. Dealing with multiple days of 100+ degree weather is NOT fun.

The heat really bothers my MS, but then again so does weather change in general. I know I’m not the only one… but it’s really hard to deal with the way my MS “acts up” when the weather changes… it’s not something we can control (obviously).

By keeping an eye on the weather forecast, I know what to expect, but I also know that when the weather changes (which it drastically does in the great state of Texas) I need to take it easy. It sometimes feels as if my body is protesting the weather change… it doesn’t help that I have arthritis as well, from being a walking accident most of my life and breaking bones non stop.

I know everyone that lives further north, has a hard time dealing with cool weather, but I don’t have that problem, and I frequently joke on how I want to live in Alaska, or something. Where I wouldn’t have to deal with the constant heat here in Texas!

One way I’ve found to “help” my body’s aches and pains from the weather change is taking an Epsom salt bath. It really helps me relax, and I make sure not to have the water TOO warm. But, it does ease the ache my body gets when the weather is changing.

That’s all I have found that helps a little bit, when dealing with the weather… but I would love to hear how others cope with it.

It’s too bad we couldn’t conquer an Island, and name it MS Island, where it’s a wonderful 70 degrees outside constantly… One can dream 🙂

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Where Do I Fit This In?: How to Prioritize When You Have MS

Let’s face it, life is hectic. It can be messy and chaotic, and that could be just your morning. We live in a world that thrives on fast-paced routines and schedules, so people rarely have time to manage their day to day, let alone trying to manage a chronic illness like MS. Medication and symptom management play a significant role in the course of this disease, so it can be challenging to find time in the day to fit these tasks in along with life’s expectations in general. How does one try to find time to rest, or jot down questions to ask the doctor at the next visit, or to document a new symptom that has come on? There seems to be a limited amount of hours in the day to complete all of these demanding limitless activities.

Here are some tips on how to manage these tasks along with the day to day:

  • Make time to take breaks. When you have a chance to rest, do so, even if for just a few moments in the day. It may be what you need to give yourself a boost or to take the time to write down a question for the doctor.
  • Have someone else help you! It’s challenging for some people to ask for help, but if it allows time for you to take care of yourself, ask!
  • Use the MSAA’s mobile phone application My MS Manager to help keep track of your symptoms and medical records, as well as current MS related news.
  • Prioritize! Sometimes there just isn’t enough time in the day to complete all tasks, but your health should be a top priority. Make yourself a list of attainable tasks to perform in a day, and make sure health related tasks come first.

What are some ways you manage the day to day?

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The Time is Now to Start Something New: A Quick Step Guide for the MS Community

“Your present circumstances don’t determine where you can go; they merely determine where you start.”

–Nido Qubein

As the summer comes to an end and we embark on the last few months of the year, it is time to challenge ourselves and start something new.  Just as the kids prepare for the new school year, prepare yourself for a new task.  Is there a goal you wish to accomplish, a skill you would like to learn, or maybe just a good book you’ve been meaning to read?

Starting something new can be scary, especially if you have tried unsuccessfully in the past.  But from failure we can learn, and today is a new day.

  • First, decide what it is that you want to accomplish.
  • Second, set measureable goals for yourself, or mini-goals to help move you along.
  • Third, make it realistic.  Many little successes over time reinforce your goals and set you up for success.
  • Fourth, set a deadline, but make sure to provide yourself with a reasonable amount of time to accomplish the task.
  • Last and more importantly, reward yourself!  Even if you haven’t succeeded, you set out to try something new and have probably learned some things along the way.

Starting now, what goals would you like to accomplish?

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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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Resources for the Caregiver

The role of the caregiver is often described as “the rock” or “the foundation” of the family; the one responsible for the wellbeing of all. But who takes care of you? Just as much as your loved one needs your support, you need support also. It is ok to take a break, and turn to help when you need it. In order to be the best caregiver you can be you need to be well rested both mentally and physically. Being the primary caregiver for an individual with MS can be challenging. The unpredictability of MS itself creates an additional challenge in trying to manage your day to day life.

There are some helpful resources for those in the caregiver role to aid in the management of the daily challenges of caregiving. The Family Caregiver Alliance provides caregiving information and advice as well as a guide to state resources available to caregivers. The Caregiver Action Network offers information and resources to individuals in all types of caregiving situations. The site helps to identify the various needs that caregivers may express through their varying roles.

Another great resource directed specifically towards spousal caregivers is the Wellspouse Association. They coordinate a national network of Support Groups and facilitate a Mentor program. And when the time comes for a break, the National Respite Network provides a National Respite Locator to help caregivers locate respite services in their community. The site also helps to educate caregivers on how to find and choose appropriate respite care.

With so many resources available to assist the individual in the caregiving role, now it is your time to take a break and be the best caregiver that you can be.

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Summer Travel Tips for Flying With MS: Part 1

By Jeri Burtchell

Summer travel by air with multiple sclerosis doesn’t have to mean anxiety and exhaustion. With a few tips your journey can be smooth sailing. Here are some timely tips gathered from MS patients who travel frequently.

Before you leave home, search the internet for your destination to learn about the terrain you’ll be visiting, the weather, and your hotel’s amenities. You can even use Google Maps’ Street View to plan your excursions ahead of time. Having an idea of what to expect allows you to design your trip for maximum comfort. Likewise, when making hotel reservations, ask for an “accessible” room. They have more grab bars in the bathroom, and often lower toilets and sinks, wider doors. They are usually located closer to the elevators or on the ground floor.

When booking your flight, request a wheelchair. Even if you don’t use one at home, it makes conquering an airport much easier. Not only do you conserve energy and stave off travel fatigue, but the assistants who push you know where they are going and can get you there quickly–helping you catch connecting flights with ease. If you have a cane, bring it. Like a red flag, canes signal disability and airline staff go out of their way to assist you. No matter if you are having a good day at home and don’t expect to need it, air travel is taxing and you will be glad you brought your cane at day’s end.

If you are using a carry-on bag larger than a purse or small backpack, invest in a roller bag. The wheels and long handle are going to make lugging it around with you a lot easier. When checking bags, tie a bright piece of cloth on the handle of each one so you can spot them quickly in a sea of luggage that all looks the same on the carousel in baggage claim.

Security check points are notorious for long lines and hassles, but you can make things easy on yourself. Leave your belt at home and empty your pockets into a baggy stored in your carry-on ahead of time. If there is an outside zippered pocket on your roller bag, use that space for your ticket and ID, along with your ziploc full of liquids that need to be separate from everything else for inspecting. Slip-on shoes are a convenient alternative to ones that lace up and requires no sitting or bending to put them back.

Stay tuned for more tips on Wednesday!

*Jeri 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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Swim for MS News – July 2013

The July 2013 Winners are…
Missy Franklin Autographed Photo:
Congratulations Julia, for being the top Swim for MS fundraiser during the month of June!

Swimsuit Prize:
Congratulations Kara for winning a Swim for MS swimsuit! This suit was designed and made by HARDCORESWIM!

How do I Swim for MS?
Go the Distance – Individuals or teams set a challenge goal to swim a certain amount of laps, distance, or time during one day or over a set period of time.

Make a Splash – Participants turn fun pool activities into exciting fundraisers such as pool volleyball tournaments, cannonball jumping contests, and more!

How do I receive Community Service Credit?
If you or someone you know needs to fulfill community service hours – Swim for MS! Swim for MS is a “virtual volunteer opportunity” – this means that you contribute as much time as you can – when you can!

  • Register online at SwimForMS.org.
  • Set your challenge goal – Swim 100 laps in 10 hours and raise $150.
  • Ask your friends and family to support your cause.
  • Keep a log of hours swam and track your progress on your page.
  • Once completed, email swim@mymsaa.org to receive a confirmation letter of your hours!

Swim for MS Swimsuit Partnership
MSAA has partnered with HARDCORESWIM to provide exclusive Swim for MS swimsuits! HARDCORESWIM is based in Southern California and all items, from start to finish, are produced in the USA. Two different Swim for MS styles are available for men and women! Check out the Swim for MS page on their site and order your suit today!

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.

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Tips for Staying Cool and Conserving Energy

As the temperature continues to rise during these summer months there are several ways to help beat the heat and conserve your home energy. Start by trying some of these tips to lower your energy bill and keep your home cool!

  • Keep doors closed to uncooled parts of your home. If you have central air conditioning, close off the vents to any rooms that you will not be using.
    • Tip: The lowest level of a home is often the coolest. If you have a basement, plan to spend most of the day in this room, to avoid over cooling the rest of your home.
  • Using ceiling and other fans, even if you have air conditioning, helps to provide additional cooling and better circulation of the cooled air.
    • Tip: Place a bowl or tray of ice water in front of a fan to increase the chill factor!
  • Seal any holes or cracks around doors and windows, this helps to eliminate cold air leaks. Make sure to seal around window air conditioners with insulation.
  • Close the blinds and shades in windows facing the sun to keep out the sun’s heat and help fans and air conditioners cool more efficiently.
    • Tip: Check out energy efficient curtains or blackout curtains to help keep the light and heat out of a room!
  • Clothes dryers and dishwashers produce a lot of heat. Use them in the early morning or late evening, not during the hottest part of the day.
    • Tip: Wash clothes in cold water and air dry in front of a fan. This tip works the same as the bowl of ice water!
  • Turn off TVs, computers, and other electronic devices rather than use standby mode. Electronic devices can create additional heat in the home.
  • Unplug items like cell phone chargers, DVD players, microwave ovens and other appliances. They still use energy even when turned off!
    • Tip: Plug electronics into power strips and turn off the power switch when the items are not in use.

The Low Income Home Energy Assistance Program (LIHEAP) helps keep families safe and healthy by assisting families with energy costs. Check in with LIHEAP about energy conservation and low income energy assistance programs. Often in the summer months, those with lower incomes, or individuals with disabilities are offered discounts on their energy bills to help keep their homes cool during the summer months. For information on applying for LIHEAP assistance, please contact your LIHEAP State or Territory agency.

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Greetings from the Midwest!

I’ve hosted many educational programs over the years, where I have had the opportunity to meet many wonderful people, who have enriched my life.

In these meetings, a common theme has emerged – Attitude. Presenters often speak to the importance of a positive attitude. It can have a profound impact on how we feel and handle the challenges we face each day.

One thing I hear often in the field is how frequently our clients take on a variety of challenges with a positive outlook.

One person who stands out is Dan, an MSAA client, that I met at a program. He shared his own story of overcoming obstacles with gusto and motivation. There are many individuals like Dan who come to our programs and share their struggles, as well as, their triumphs. These interactions are what make my work in the field so inspiring.

What a week in the Midwest! There were several programs held June 17-22 where clients had the pleasure to listen to prominent MS medical professionals in Michigan, Ohio, and Wisconsin. Each presented his approach for managing MS symptoms and improving quality of life. MS clients, family, friends, and caregivers were inspired. All attending learned much about the importance of nutrition, exercise, and appropriate medications. Many practical tips were discussed.

At one event in Wisconsin, I had the pleasure to meet Cheryl Vanderloop, MSAA’s Artist of the Month for June. She attended a program and introduced herself to me. She is very inspiring. At the end of the program, I surprised her by opening up our website via a wi-fi connection, where I displayed her work and introduced her to the many in attendance. She received a resounding round of applause. Her smile was infectious.

I urge all of you to attend our educational events. They’re fair, balanced, and lots of fun. Please check out MSAA’s Calendar of Events for a program near you. Also, if you have an idea for program topics please leave a comment below!
I look forward to seeing you during my travels throughout the great Midwest!
Smile!
Scott

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