Expediting Travel When You Have Multiple Sclerosis

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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!

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The Benefits of Aquatic Exercise and MS

By: Matt Cavallo

matt blog

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/

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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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Vitamin D and Multiple Sclerosis

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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.

 

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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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Give Yourself Time to Plan for Travel

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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!

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Highlights from the 2014 American Academy of Neurology’s Annual Meeting


MSAA News Update
Please read MSAA’s article summarizing highlights from the American Academy of Neurology’s (AAN’s) 66th Annual Meeting, which was held in Philadelphia and concluded in early May. Neurologists from around the world attended this exciting conference, where the latest findings in MS research and treatments were presented.

Topics highlighted in this article include:

  • Updates on approved treatments for MS
  • Study results on experimental treatments
  • Medications under investigation for progressive forms of MS
  • Pregnancy information for individuals taking disease-modifying therapies
  • and much more!

Read the full article on highlights from this year’s American Academy of Neurology’s (AAN’s) 66th Annual Meeting

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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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The Eternal Optimist, or How to Walk a Cat on a Leash

By: Jeri Burtchell

jeri blogI was just 11 when our family lived through a flood that filled our house with mud. When the water subsided we came home to survey the damage. Instead of lamenting over all we had lost, my dad laughed and pointed out that the cat box was still in perfect condition because it had floated all around the house. That was my first lesson in optimism.

His positive attitude was contagious and taught me to find the humor in things no matter how grim the situation.

But when I was diagnosed with MS in 1999 and then we lost my dad to cancer two years later, my eternal flame of optimism started to flicker.

It was hard dealing with the disease, but even harder to find the bright side when my heart was filled with sorrow. Eventually, my dark cloud lifted. I realized that even though I can’t change the fact that he was gone or undo my diagnosis, my happiness is a choice I can control. As Sheryl Jacobson Skutelsky wrote in a great article, “Gratitude equals a positive MS attitude.”

My need to see the bright side of every situation became my coping mechanism. Positive thinking has forced me to step outside my comfort zone to explore new things in life. If you let all of the “what-ifs” hold you back, you will live in darkness where the landslide into sorrow and pity are only one negative thought away.

So every day I try new things. And every day I try to find the humor in something. The two often combine as, (more often than I like to admit), humor winds up being the salve I put on some of my not-so-great ideas when I go trying new things.

Which came in handy when I thought I could walk a cat on a leash despite having never seen it done before.

Tweak is my oldest son’s Flame Point Siamese cat. One day he disappeared and was gone without a trace. Two weeks later he reappeared in my son’s back yard, having spent at least one of his nine lives while he was gone. Tweak was missing fur and skin from his hips to his tail. The vet said it looked like he’d gotten trapped in a fence and ripped his way out. He came home with me so I could nurse him back to health.

Tweak is the most loving, good-natured cat you’ll ever meet. He’d rather sit on your lap and purr than do anything else. Even in pain, he never displayed so much as a fang. He just purred, thankful to be alive.

But Tweak is a former indoor-outdoor cat, and despite his sunny disposition, after a few weeks of being cooped up inside, he started to get cabin fever.

I thought to myself that there must be some way to let Tweak get some sunshine and fresh air. As so often is the case with my “brilliant ideas,” if I listen hard, I can almost hear my dad laugh.

I got a harness made for extra small dogs because, for some reason, they don’t make them for cats. And I got a leash.

Tweak willingly let me strap the harness around him. But once outside, he stood frozen, not knowing what to make of his new surroundings.

You’re probably thinking he made a mad dash and escaped right away. You’re wrong.

No, I was proud that my idea was working as planned. Tweak let me lead him right down the walkway to the yard out front as if he’d been on a leash all his life. He rolled in the grass and soaked up the sun. He purred while I scratched him behind the ears.

We had a moment of pure Zen.

Then the neighbor started his car.

In an instant, Tweak began channeling Houdini. He flopped around at the end of his leash like a trout on a fishing line before one quick duck-tuck-and-back-up move gave him the freedom he craved.

He only got about ten yards closer to the house, when I walked right up to him and picked him up. He was purring, my heart was pounding. I was relieved I hadn’t let my son’s cat escape.

And even though it didn’t go as planned, I can look back and laugh.

My dad taught me lessons in finding humor, and now Tweak is teaching me about being happy no matter what my physical circumstances. The takeaway from both is that attitude is a choice, and I choose to be optimistic.

Even if I have to learn the hard way why you never see cats on leashes.

Resources:
http://contributors.healthline.com/voices/gratitude-positive-ms-attitude

*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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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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