Expediting Travel When You Have Multiple Sclerosis

Posted on June 18, 2014 by MSAA

If you are traveling this summer, you may need to do a little extra planning to ensure you have the best experience possible on your trip.

Groups like Able to Travel sponsored by the United Spinal Association act as travel agents for accessible vacation planning and accessible guided tours and cruises. You can also do it yourself by calling ahead to hotels, restaurants, and venues to ensure accessibility of rooms, bathrooms, and fun activities.

If you are using an airport, you can actually call the TSA 72 hours in advance of your trip to arrange for a quick experience getting through security checkpoints (http://www.tsa.gov/traveler-information/travelers-disabilities-and-medical-conditions). Additionally, many airlines offer assistive services for boarding and navigating the airport, so be sure to make the airline and flight attendants aware of any needs you may have in advance of your flight.

There are also helpful websites like Flying with Disability which may offer helpful tips and suggesting for easing travel burdens.

Remember to do your homework before paying for services or using a company you are unfamiliar with to plan your trip or travel with, and most importantly – enjoy your trip!

The Benefits of Aquatic Exercise and MS

Posted on June 16, 2014 by MSAA

By: Matt Cavallo

Walking was always something that I took for granted until that one day that I couldn’t do it anymore. Then, as I watched the world walk by me, I yearned to be up on my feet ambling about. The problem was that no matter how strong my mind and determination were, my legs would simply not respond. It was hard for me to understand that the problem was in my spine and no amount of mental fortitude could overcome the spinal lesions caused by multiple sclerosis.

I was confined to small, assisted steps. I was able to travel only from my bed or couch to the bathroom and back. My wife brought food and drinks to me when she was home but when she was at work, I usually didn’t eat or drink. I was ashamed that I lost functionality the way I did. I didn’t want people to take pity upon me. I had always been this big, strong athletic guy and now I couldn’t even walk down three steps to get out of my house.

My doctor was confident that I could regain functionality and learn how to walk again. I wasn’t so sure. He said that the Solu-medrol would act to reduce the swelling in my spine, and little by little sensation would return to my legs. He did caution me that I would have to relearn how to walk and ordered me to have aquatic therapy. I was skeptical, but I gave it a shot.

The results were truly amazing. When I started exercising in the pool, my legs felt lighter and easier to move. The exercises really help to strengthen and balance me on my feet. While I was in the water, I felt free again. After three weeks of aquatic therapy, I was walking with a cane for short distances. I was not negotiating steps or hills, but I could get around the house on my own. More importantly, I was able to go to the bathroom again by myself. I was amazed at my progress. In just three short weeks, I was completely independent with walking.

Today, if you saw me in the street you wouldn’t think that I ever lost function of my legs. One of my secrets is that I continue to work out in the pool. I live in Arizona and can use my pool most of the year.

Now, if you are having immediate problems with strength, balance or mobility, you should contact your physician right away. If you are looking for a strengthening exercise routine that you can do on your own, you’ve come to the right place.

MSAA has a new online Aquatic Center that you can access at http://SwimForMS.org. The Aquatic Center has tools and inspirational videos for the MS community. Some of the resources include: guides for patients and healthcare professionals, a handy tip sheet about aquatic exercise and MS, information on how to find an aquatics facility in your area, and inspirational videos from three individuals sharing their personal stories about how water activities have positively impacted their lives.

Even if you don’t live in Arizona, you can still turn any pool, at any time into your own personal gym while raising awareness for MS.

*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/

Summer Fun

Posted on June 13, 2014 by Angel Blair

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!

Vitamin D and Multiple Sclerosis

Posted on June 11, 2014 by Samantha Schech

Recently, new studies have begun to investigate a correlation between multiple sclerosis and Vitamin D. And, while it may be tempting to make changes to your daily routine based on the information presented in these studies, it is always important to discuss these changes with your neurologist first. As this information is passed throughout the MS community, it is important to be mindful of how your body absorbs Vitamin D.

One of the more natural ways the body absorbs Vitamin D is through the skin from sunlight. However, with the increase in cancerous skin diseases such as Melanoma, individuals are more vigilant regarding the exposure their skin receives and are using sunscreens to try and block some of the sun’s UV light. With this in mind, it may be important to talk to your doctor about other ways to increase the body’s exposure to Vitamin D. For many, taking supplements and being mindful to eat more foods enriched with Vitamin D assists in increasing the body’s Vitamin D levels.

Always consult with your doctor regarding the use of any supplements or in modifying your diet. Although you may find the foods and supplements to be helpful, they could also be harmful to individuals if not monitored closely.

Give Yourself Time to Plan for Travel

Posted on June 6, 2014 by MSAA

When planning a summer vacation (or any trip for that matter) a great deal of detail is required to figure out the best place to stay, the quickest and easiest way to travel, and what activities you want to do. The list goes on and on.

When you also need to plan for accessibility or special accommodations, it adds extra steps to the traveling process. Sometimes you may even want to throw in the towel if planning the vacation becomes so hectic or frustrating that it causes increased stress or anxiety.

Depending upon your needs, creating a plan of action or checklist of sorts may be a good first step in alleviating frustrations. Here are a few ideas to get you started on your list:

1) What places might be fun to visit/where do I want to go?

2) How much do I have budgeted to spend?

3) Will I need to fly, drive, or take a train/ bus (and what are the benefits and challenges for me getting on a plane, bus, etc.)?

4) Do I want to go as part of a guided tour with a set itinerary and is there an accessible travel option?

5) Where will I stay, and do I need to call ahead to confirm accessible accommodations?

Once you begin to narrow down your choices of budget, location, and means of travel, you can then begin to focus on planning for specific accommodations (picking the seat closest to the bathroom or coordinating with your flight attendant to offer wheelchair assistance) and the fun activities you want to participate in on your trip.

Wherever you go, even if it is a day trip, try to have some fun this summer!

Who’s in your circle?

Posted on May 19, 2014 by Angel Blair

After attending a retreat this week for helping professionals, there were a lot of things put into perspective for me. One being that we all need to make time for is self-care in our routines, to maintain a balance between things we must do and things we should be doing for ourselves on a daily basis. But another poignant moment at the retreat posed the question: “Who do you want to bring into your circle?” The circle symbolizes your safe space, the area you’re surrounded by that accompanies you through your day to day. It represents your thoughts and hopes and also your vulnerabilities. So the question that was posed of whom you’d want to enter this space with you or who you’ve already accepted into this space was profound. It’s not often that we are able to take the time to consciously think of those we’re surrounded by and why it is we’ve chosen them to be a part of our lives. Being able to reflect on this was moving.

We go through life at times with certain blinders on. We rush through daily activities and sometimes forget that we’re part of a bigger world, full of other people experiencing similar types of thoughts and feelings, though each unique and different in their own way. Our circles intersect with others, and though we may not realize it, some of us have already chosen whom or what we’d like as part of our circle. They are the family and friends we surround ourselves with, those we let in when we need to connect and feel validated. They are the places we like to visit, the things we enjoy doing most. It can really be anything or anyone; it’s up to you who enters the circle, because after all, it is yours.

Who’s in your circle?

Doing What Makes YOU Feel Good When You Have MS

Posted on May 14, 2014 by Samantha Schech

Multiple sclerosis in itself is a complicated and often unpredictable disease. We here at MSAA hear on a daily basis about some of the trials and tribulations that our clients with MS face. One of the most valuable lessons that I have learned in trying to understand the whirlwind of information provided about MS is to find something that is meaningful to you and to your unique situation. With all of the information available, finding something that will make YOU feel good is a priority.

Through social media, websites, and support groups, information is provided about a number of hints, tips, or things that one person may have done to alleviate their symptom, which is wonderful, but unfortunately may not work for everyone. Not every individual with MS will experience the same symptoms and even for those who may, those symptoms may appear incredibly differently.

The point behind the story and the reason for the title is that everyone has their own needs, and each person understands and knows their body better than anyone else. These experiences and feelings are unique to you and should be treated independently to others’ beliefs and thoughts. Focusing and developing ways that make YOU feel good may help to improve your overall day to day.

Explore yourself; perhaps through journaling you can identify some needs that could be met in order to make you feel good. Guided meditation is another way to explore your inner thoughts and feelings. Sitting in a quiet space with yourself and learning about your body and the way that it feels at any point throughout the day can help to center you and focus on what your body needs.

What can you do for yourself today that will make YOU feel good?

You Can Contribute to Finding the Cure for Multiple Sclerosis:

Posted on May 12, 2014 by MSAA

If you are looking for a way to get involved or change the future of MS research, the Accelerated Cure Project and NARCOMS (North American Research Committee on Multiple Sclerosis) are great places to get started!

I want to bring attention to these two organizations, which you may not be familiar with and encourage you to look into their websites if you are interested in learning more about what they do.

The Accelerated Cure Project maintains an MS-research repository and also will be launching an online patient powered research effort. They focus on making sure researchers have access to the biospecimens (for example blood, or CSF fluid) they need to conduct research, and then aggregate the results of all of the studies performed using these research samples.The sharing of research information and results helps to expedite the MS research process.

NARCOMS is a voluntary MS registry with over 37,000 registrants currently. They support the increase in collective knowledge of the MS experience through surveys and other activities in hopes that the collective knowledge gained about the MS experience will be helpful to researchers and will also promote a greater understanding of MS.

What makes you smile?

Posted on May 9, 2014 by Angel Blair

Have you ever noticed that smiling can be contagious? That it’s hard not to smile or laugh when someone around you is? I’m not saying that life is always known to be a smile fest, as there sure are obstacles and challenges that the road of life brings, but smiling and seeing or experiencing joy can definitely raise one’s spirits. In a world that becomes hectic and chaotic in the day to day, some smiles can go unnoticed; people still smile at one another at a grocery store, or while holding the door for someone, don’t they? It’s hard to tell sometimes, because most people are rushing through their day just to get everything accomplished, and kindness and joy sometimes go unobserved.

What would happen if you slowed down long enough to take a look around you – to notice people smiling and acting kind to one another? Even though there can be dark moments in the world, there are still some who wish to radiate joy and hope to spread it to others, especially during difficult times. So try it! Try noticing others around you, those expressing joy and smiling from ear to ear at something that brings them happiness, and think to yourself – what brings me joy? And practice embracing that joy, in your day to day…

So what makes you smile?

Which half do you see?

Posted on May 7, 2014 by MSAA

Optimism – the typical description is if you see the glass half full, you are an optimist and if you see the glass half empty, you are a pessimist. It can be very empowering and reassuring to view the glass as half full. In most situations, having a positive outlook can help to impact the situation in a beneficial way.

To get more theoretical though, sometimes it may be helpful to remember it is just a glass with water and analyzing our perceptions and personal filters can help determine how they impact our outlook on life. In other words, the facts are the facts and the way we perceive a situation and our resulting emotions are usually based on personal filters of what we believe is good/bad, moral/immoral, happy/sad, etc.

Take for example when you meet a new boyfriend, people may say that you look at him “with rose-colored glasses,” meaning you cannot yet see or choose to ignore his apparent faults because you are so newly engaged in the love feeling that you are ready to brush those other concerns aside. At the end of the day, when your rose-colored filter is removed, you may be willing to deal with the shortcomings or challenges involved with that relationship, or you may be ready to hit the road running in a different direction.

In that scenario, if a person was able to view the actual situation and set aside their personal filter, they might know earlier on in the relationship that their partner is not a good match. Conversely, they might set aside someone they deem too difficult or different when if they had used a rose-colored filter, they may have given the relationship a chance and later found out that their difference could be compromised or overcome.

So back to the glass of water…ultimately, your mind may jump to one assessment or another (half-full/half-empty). While there may be benefits of viewing things one way or detriments to viewing it in another way, sometimes, especially in challenging situations, being more analytic and viewing the glass as a glass may help you to ascertain what personal filters or perceptions may be coloring your thoughts, emotions, and actions. When the glass always looks half-empty, it may be a good reminder to keep analyzing the glass and your own perceptions.

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