My MS Journey

By: Matt Cavallo

As an author and speaker, I have had the privilege of meeting people living with multiple sclerosis at MS events across the country. One of the ties that binds us is that we’re all different. Sure, we experience similar symptoms, whether they be vision, balance, memory related, or other, but each of our journeys is unique.

Whether you are just starting out as recently diagnosed person living with MS or are a seasoned traveler living with the disease for many years, there is a website available with resources to help assist you on that journey, My MS Journey.

My MS Journey organizes MS resources in a central location to help assist you with where you are at in your MS journey. The resources are categorized in an easy-to-use, searchable format. The following blog is step-by-step instruction of how to find information on the site.

5 Steps for Navigating My MS Journey

Let’s say for example that you were newly diagnosed and wanted a resource on how to talk to family and friends. My MS Journey can help using the following steps:

1. Enter the following link into your internet browser: http://mymsaa.org/journey/
2. Click on the picture or heading for your particular journey, in this case Just Starting Out:

MyMSJourney

3. Click on the section header to expand the section, and then click on the hyperlink to open the resource that you would like to select.

juststartingout 4. A new browser window will open up displaying the resource information that you were seeking.

includingfamilyandfriends 5. When you have finished accessing the information, you can either close the tab or click the My MS Journey tab to return to the main site.

Additional Functionality
While My MS Journey is categorized into sections with content and resources to assist you in each step of your journey, the home page of My MS Journey has additional functionality relevant to everyone living with MS.

A. Site Preferences – allows you to control your font size preferences, access keys, and print options to make the site more accessible for you.
B. Helpful links – these links provide tools and resources to help you better manage your MS, like the MS Resource Locator and Prescription Assistance Programs.
C. MS Trivia – impress your friends and family with how much you know about MS by participating in the trivia section. Once you make a selection, the right answer will be displayed along with how others answered.

The front page also allows you to share this site on social media. Sharing this site is important because of all the great resources provided by MSAA to help each one of us living with MS on our journey. Sharing resources that help each of us on our journey helps strengthen the MS community. Thank you for reading and I hope you take advantage of all the great resources that MSAA and My MS Journey have to offer!

*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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Having a Stress-Free Holiday Season When You Have MS

By: Jeri Burtchell

Each year, I judge how well prepared I am for the holidays by the way Halloween plays out. When I saw my son donning the same scary mask we bought several years ago, I realized I’m as ill-prepared as ever. We’re lucky it still fits, I think to myself as holiday dread settles squarely on my shoulders.

The problem with his costume is not that we aren’t creative, it’s just that life is busy and time slips through our fingers like greased marbles these days. We end up making last minute plans and this Halloween was no exception: get the plastic pumpkin off the top of the fridge and start searching the house for that mask (two hours before Trick-or-Treat officially kicks off). I’m not creating the perfect childhood memories for my son, I fret to myself as I look under the bed for the face from Scream.

The limitations that my MS fatigue and reduced walking ability have placed on me are showing. I’m not looking forward to Thanksgiving and Christmas with the same enthusiasm as I once did. I’m filled with angst as part of me wants the ultimate “joyful” experience, while the other part just wants it all to be over.

But the holiday season is stressful for everyone. The difference is some people thrive on the stress, which they call “anticipation.” But others like myself are filled with dread. Ever since I was diagnosed with MS in 1999 it seems like I stopped looking forward to the time between Halloween and New Year’s Day. I think it’s because I worry about stress triggering a relapse. And then part of me feels guilty because the children in the family aren’t getting the full “magical” experience.

While I do face physical challenges, my MS isn’t the only factor shaping our family holidays. Mom is 91, and though she’s still undeniably the sharpest knife in the drawer, she doesn’t get around as easily as she once did. Still other family members are living with everything from lactose intolerance to diabetes which influences the dinner menu.

But we are managing. Together our family is learning to adjust to our new collective “normal”. We’re redefining what our get-togethers look like. The emphasis is on comfort and ease while downplaying commercialism. So what if the tree isn’t up or we don’t have a full turkey dinner with all the trimmings? We can define the celebration on our own terms.

The holiday dinners will be potluck so that we can each focus on one dish and prepare it ahead of time. Nobody will be banished to the kitchen and make-ahead dishes can be prepared when the cook (or baker) is feeling up to it.

With dinner prepared in advance, we’ll be free to enjoy each other’s company. The conversations, the laughs, the squealing children, and the photo ops will fill our memories of the day.

If Mom has to take a nap or I have to go lay down for a while, that’s okay. Everyone knows we both have our limits.

At Thanksgiving we’ll draw names for Christmas gift giving. Everyone ends up with a present but only shops for one person instead of ten. With a $20 limit and the convenience of online shopping, we can eliminate the stress of holiday crowds. We’re trying to make it more about the get-together and less about “what-did-I-get?”

Over the past fifteen years, I’ve come to learn a lot about managing my MS. I need plenty of rest, I need to eat right, and I need to exercise. But it’s just as important to reduce the stress in my life. Not only is it bad for MS, but for everyone’s health in general. By reducing the amount of effort (and stress) it takes to pull off a family gathering, we’re really looking out for our health.

The holidays should be about family, love, togetherness, and appreciation for every positive thing in our lives.

So when next year rolls around and my son is reaching for the same old scary mask at Halloween, I’m going to go a little easier on myself. The mask can be a new tradition, a symbol of how we can let go of society’s expectations. It will signal the start of a stress-free holiday season and–with the help of my family–I know we can do this!

References:
http://www.healthline.com/video/managing-multiple-sclerosis

*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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Planning for a Stress-Free Holiday

With Thanksgiving a little over a week away, many families have already started planning for the holiday season. Who is hosting, who’s making the turkey, and who will be opening their home to holiday guests this season? As if the actual day wasn’t hectic enough, with the shuffling around of foods, the constant chatter, and all of the hugs and kisses; why stress this upcoming week in preparation?

The following tips may help keep this holiday season a little less stressful:

1. Make a plan: Start by listing out each of the tasks that need to be accomplished. Breaking them down into groups can help keep things organized (i.e. cleaning, shopping, cooking).

2. Ask for help: Be prepared to delegate tasks to others. Go through the list and identify tasks that can easily be accomplished by someone else. Family and friends are usually asking, “What can we do or what can we bring?” Use this opportunity to check something off that list.

3. Practice self-care: Take breaks throughout the day; do not push through to finish a check list. Find a good mix of tasks that you enjoy with ones that are less pleasurable; when it comes down to choosing one or the other, always choose the one that makes you happy.

In what ways do you plan for a stress-free holiday?

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The Overhead Solution

by Kimberly Goodrich, CFRE, Senior Director of Development

Several of my articles and posts have focused on the Overhead Myth – the commonly held belief that financial ratios are the sole indicator of a nonprofit’s performance. Over the last year, it has become widely agreed that stars and ratios do not clearly communicate a nonprofit’s impact or show that we are meeting our mission.

The Multiple Sclerosis Association of America has joined BBB Wise Giving Alliance, Charity Navigator and GuideStar in the pledge to end the Overhead Myth and move toward an Overhead Solution. Instead of focusing on the percentage of charity’s expenses that go to administrative and fundraising costs-commonly referred to as “overhead”-we need to focus on what really matters: trustworthiness and performance.

Last year, BBB Wise Giving Alliance, GuideStar, and Charity Navigator, published an open letter to the donors of America denouncing the use of the “overhead ratio” as the sole indicator of nonprofit performance. The letter, signed by all three organizations’ CEOs, marked the beginning of a campaign to correct the common misconception about the importance of a low overhead ratio.

A new open letter, published in October on www.overheadmyth.com, educates and encourages nonprofits to work towards an Overhead Solution. Specifically, the letter asks nonprofits to do three things, “(1) demonstrate ethical practice and share data about performance (2) manage towards results and understand your true costs and (3) help educate funders on the real costs of results.” The letter goes on to provide resources to help nonprofits in this critical endeavor to measure and report on what matters most.

Join us in spreading the word about this important topic. Nonprofits and their supporters are encouraged to learn from and share the latest Overhead Myth letter. We’d love to hear your thoughts and ideas. As always, please contact us if you have any questions at all.

Thank you for your support in this effort.

*About Kimberly

I am the Senior Director of Development at MSAA and have worked in the nonprofit arena for over 15 years. I love reading, running, theatre and the Green Bay Packers. I volunteer with the Disabled American Veterans teaching outdoor sports like skiing and kayaking to injured veterans and find that I receive much more from them than I am able to give.

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Some Extra Holiday Help

There is no doubt that the holidays are rapidly approaching these days, especially with cooler temps across the country and decorations filling the stores as continuous reminders. While this time of year translates into joy and cheer for most, for some individuals this may represent a time when some extra help is needed to make the holiday special. Financial difficulties can make expectations of the holidays a struggle, but it’s important to know that there are resources available that may help support your holiday activities, and therefore lift some of the stress that can accompany these festivities. The following community resources may offer help through the holidays:

  • Salvation Army offices offer seasonal services and holiday assistance programs to help families in need with holiday dinners, toys, and clothing. Search for your local office to inquire about direct programs and services and application time frames.
  • The United Way can offer information and referrals for holiday assistance programs in your community.
  • Contact the county department of family/social services in your area, as their office may have additional holiday assistance and resources available.
  • The Toys for Tots Program provides new, unwrapped toys during the holidays to children in need through community outreach and support efforts.
  • Local religious organizations may offer seasonal assistance as well, though these programs can vary based on location. Contact the groups directly to inquire of services available.

Many community assistance programs have specific application deadlines and requirements in order to receive holiday assistance by a certain time. Be sure to reach out to the resources to see what’s available in your area and how to apply. Some extra holiday help can go a long way!

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Reviewing Financial Statements – Taking an Active Role in Reducing Debt

rsz_couple_smiling_and_talking_to_man_over_paperwork

How often do you take the time to review your bill statement before you write the check or pay the bill? Not too often, right? As we discuss money management and how to create a budget this month, one important issue must be addressed. As with all things in life, mistakes can happen, and credit card, cable, and medical billing companies are not immune to mistakes.

When a statement or bill comes through the mail, take some time to read through the charges to assure that no added fees have occurred or no changes to the bill have been made. If you are receiving certain credits on your bill, make sure those are being taken off appropriately. Also, make sure that the full payment was received and taken off of the total balance due. If there is something on a statement that you are not sure of, make a call to a company to discuss the charge. Many companies are quick to admit a mistake and will immediately reverse the charge.

Sometimes a phone call to a company can provide additional savings as well; perhaps there is a promotional deal available or a program that you can qualify for to assist with lowering the payment. Making a phone call and taking an active stance towards managing your bills proves to the company that you are in good faith trying to reduce the debt.

What steps have you taken to have a more active role in reducing your debt?

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Managing on a Budget

rsz_distressed_couple_with_calculator_and_paperworkCreating and trying to maintain a financial budget for monthly expenses can be difficult at  times. Some people have to adhere to a strict budget due to their financial circumstances, so maintaining a budget is especially important to ensure needs and responsibilities are  met each month. Making a budget that makes sense to you and can somewhat ease financial concerns can hopefully support your monthly financial planning needs.

Here are some suggestions of what to consider when creating/maintaining a budget, and where to find help:

  • Create a budget that is practical for you to track. Make computer spreadsheets,
    and file or record expenses on paper. Find an accessible way to track expenses that works for you.
  • Make a list of monthly expenses and income resources to identify how much money is coming in and how much needs to go out towards expenses.
  • Keep a record of spending and estimates of monthly bills to identify areas that can be modified, if any, to keep finances on track.
  • Reach out to financial management/budget counseling resources in your area for additional guidance and support. These agencies, sponsored under the U.S. Department of Housing and Urban Development Administration, offer services to help manage finances and provide additional housing and financial counseling services as well.

Budgeting finances can be difficult but necessary for many individuals. Ensuring financial needs are met can be stressful so it is important to reach out for support when needed and find a system that works for your needs. What are some ideas you have to help create a budget?

 

 

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Accessible Voting

You may or may not know it, but Tuesday November 4th is the day to vote. That’s right – midterm elections are here, and for many people that means they get a chance to make a decision about the makeup of Congress or governorship in their state.

But what do you do if you arrive to your designated voting site and the building isn’t accessible, or there are other problems which would cause you difficulties in casting your vote?

Go to the voting place prepared. You don’t want to be stuck – physically or metaphorically – at the voting site and not be able to cast your vote.

Here are a few tips to make sure your vote is counted:

  • Make sure you are registered to vote. There may be a specific time frame you must register in advance of a vote, so if you miss out this year, go ahead and register so you can vote in future elections.
  • If you are not sure, confirm your voting location with your city or county government office. You can also call ahead to ask information about where to park, whether there is accessible transportation, etc.
  • Get the phone number for your State Office of Protection and Advocacy and bring it with you when you vote. If you run into any barriers (lack of accessible transportation, physical accessibility of the building, problems accessing voting equipment, or understanding your rights), this is the correct office to advise you of your rights under the ADA and make sure you get a chance to vote.

Why go through the hassle of going to the voting booth at all?

  • Many states allow individuals to register as an absentee voter. Once you get registered, you can remotely cast your vote! For next time, plan ahead and register to absentee vote.
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Happy Halloween 2014

Boo! From all of us here at MSAA, we’d like to wish the multiple sclerosis community a safe, happy, and fun-filled Halloween!

By Johnny Martin ecdl (Own work) [CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons

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Nutrition and Multiple Sclerosis

rsz_family_eating_dinner_aerial_view

As we wrap up this month focusing on reaching out to supportive professionals, there is one other group of professionals that plays an important role in the overall health of individuals with MS. One of the top questions asked in regards to MS care is around the idea of a diet for MS, or which foods to avoid for individuals with MS. Unfortunately, this is a difficult question to answer as there has been no hard science that indicates that any particular food groups are specifically beneficial or not to those with MS.

With MS being a very individualized disease, meaning that it affects each person in a different way, it is difficult to say that one thing will work for everyone.

Just as MS is a very individualized disease, understanding and creating a nutritional plan must be individualized as well. Meeting with a dietitian or a nutritionist may help to better understand the foods and nutrients that your body needs in order to work properly. By working with a professional, he or she can help to safely monitor the changes occurring in your body based on the foods that you add or withdraw, depending on your plan.

Talk to your doctor about a referral to a dietitian or nutritionist in your area. You may also wish to reach out to your insurance provider to learn about insurance coverage for these visits. Licensing and education can vary between those in the nutritional field, it is important to do some research on the professional and their background and beliefs about nutrition. Some nutritionists may have a belief in herbal supplements and other forms of natural healing while others may not. Knowing what you are comfortable with in regards to your treatment and matching that with the appropriate practitioner can aid in the overall process of crafting a healthy regimen for you.

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