Advanced Planning

Nobody ever really wants to think about what needs we may have in the future, but there comes a time when each of us should consider what future plans we would like to make if challenging circumstances do arise. Making plans for the future is not exclusive for persons with disabilities or for older individuals, it applies to everyone.

There are many components that go into long term care or advanced planning. Generally, these plans may include whether to purchase long term care insurance as well as evaluate various living environments and arrangements if one is not able to continue to live independently. Additionally, this process may also include some of the harder to discuss and more heavily laden issues such as creating a will (for what we would like to have happen to our belongings and assets) and also a “living will” (a plan to try establish our medical and treatment wishes if at some point we are unable to make those determinations ourselves).

These are tough things to mull over and possibly even harder to discuss with loved ones and make “official” in writing. But, the question we often forget to consider is what happens if we don’t plan for these things…who will make these challenging and difficult decisions?

The truth is that if we do not make these decisions then someone else has to make them for us.  Friends and family members may have conflicting ideas about the best course of action or decision makers may feel guilty if they are not sure if they are carrying out our wishes. The best gift you can offer to help make difficult situations a little easier is to think about a plan and then follow the process to make those wishes legal and known to all the important parties.

Yet, it is difficult to discuss these needs, but we don’t have a guidebook of life to know when the time will come when these decisions will be necessary.  In that respect it becomes important to examine these issues now when we are able to make those decisions for ourselves and maintain control over our wishes.

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Special Moments

“Life isn’t a matter of milestones, but of moments.”

- Rose Kennedy

 “We do not remember days, we remember moments.”

- Cesare Pavese

There are many different types of moments we all experience throughout life. Some are good, some not so good, and some that remain with us for years to come. Our minds let us store these moments deep down in a place where we can retrieve them from time to time to recall how truly special the moment was. These moments will not look the same for everyone. The defining characteristic that makes these moments special is that they are different from someone else’s. They mark a time in our life that captivated us for one reason or another and helped define who we are, what we like, and what we believe to be special. So what are some of your special moments?

 

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Everyday Life

I don’t know about you, but I get comments sometimes when I can’t do something like, “But you did it the other day, you were fine.” I think that’s one of the many things people without MS don’t understand. Just because we can perform a certain task one day, doesn’t necessarily mean that we can do it EVERY day.

Sometimes it is really difficult to explain to others that every day with MS is unpredictable. So one day I might be able to clean house, but on another day if I clean the house I might have to “pay for it” for a day or even a week later. Everyone with MS is of course different and certain activities affect us differently.

I find it very difficult to explain to people why I do certain things knowing that I will “pay” for it later. A lot of people say, “If you know you’re going to pay for it later, why did you do it in the first place?”

This goes for both daily obligations and leisure activities, like when I’m out of the house hanging out with friends, it’s fun and refreshing. I may make a choice to stay out too late because it’s nice to get out of the house and be “normal”. But when I do that (staying out too late, for example), I do it knowing that I will pay for it with increased fatigue or other symptoms later on. It’s kind of like my MS is grounding me for staying out too late.

Even when I decide to clean my house or something similar to that, I do so know that I will deal with increased symptoms later on. By knowing this, I don’t partake in activities that I know I will “pay for” when I have events coming up (like the Holidays) because I don’t want to be stuck on the couch for these events.

I try very hard to stay active and live my life the best way I can but sometimes I find that I don’t always play by all the rules and recommendations. Sometimes I just want to stay out a little bit too late.

I’ve made a tremendous amount of changes in my life because of my MS, and I know my body better than anyone else. So, if I listen to it, I find that I typically know when I am doing “too much”. It is my choice whether to listen to what my body is saying or not and I don’t really need other people to judge my decisions.

For me, managing my life with MS, comes down to a freedom and independence thing. While we understand when others express their concern about certain decision we make… you really, “Don’t get it, till you get it.”

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Send a Thanksgiving eCard

 We have a winner!

The race for MSAA’s 2012 favorite Thanksgiving Card was a close one!

All six contenders received their fair share of votes, but MSAA’s “Thanksgiving Wish to Friends and Family” was the winner! In second place was “Still Life with Candles,” while “Pilgrim Puppy holding a chalkboard” earned a third-place title.

1,000 people voted in this fun election to select MSAA’s official Thanksgiving Card for 2012! MSAA’s “Thanksgiving Wish to Friends and Family” online card is now available for you to select and send electronically to everyone you know. And since the other candidates received many votes as well, MSAA is offering all six cards for you to send!

Select and send Thanksgiving online cards to your friends and family today!

 

 

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Preparing for the Holidays

It’s hard to believe it’s already that time of year again… Thanksgiving is here and Christmas is right around the corner. While it’s a joy to spend time with family and friends during the holidays it can also be very stressful for everyone, especially for those with MS.

So what do you do during the holidays? How do you manage your stress level during all of it and still get the shopping and the cooking done, and even the traveling?

I thought I would share how I get through the holidays with everyone. My memory isn’t that good, so if I don’t write it down… I will forget about it. So I start off with a checklist. This way I know what I have done and what I haven’t done and what I need to buy to make things for the holidays and what people I need to buy gifts for.

First off, when it comes to traveling, I don’t have to fly anywhere but I do have to drive, or my husband drives if he isn’t working (he is a Fire Fighter and works shifts). So, to make sure that I don’t have to deal with the traffic and crazy drivers during the Holidays, I always make sure that I plan to get to my destination a day or two before the actual holiday. There is usually a lot less traffic this way, and I make sure to plan my trip where I’m not going to be on the busy roads.

Then we have to think about all of those holiday gifts we have to buy. Well, I’m not brave enough to shop on Black Friday, I’ll tell you that much. I have found it very easy and reasonable to do my holiday shopping online. I also try and plan ahead on my gift shopping, so it’s not all done at once and I don’t “break the bank”. A lot of stores have it to where you can shop online and have it shipped to the store location closest to you, if you don’t want to pay shipping and handling. Something I’ve seen a lot lately is where the stores will wrap your gifts for you. This is a lifesaver for me because I couldn’t wrap presents well before and now that I suffer from spasticity in my hands; it’s nearly impossible (and at times dangerous) to wrap presents.

Now on to the lovely cooking portion of the holidays… all of that wonderful food that makes you feel guilty you ate once the holidays are over. I don’t have holiday meals at my house, so I don’t have to worry about a bunch of people coming over, but I do have to cook things and bring them to family gatherings. The crock-pot is my best friend during the holidays, because I can throw the ingredients in to the crock-pot and don’t have to worry about it all that much. I’m a total addict to Pinterest and the easy recipes that are shared. Pinterest also has a lot of quick/easy ideas for almost everything that you can think of.

If you are one of the lucky ones that has the whole family come to your house for the holidays, that’s something that I couldn’t handle, so kudos to you. However, if I am having a party for the kids or something like that at my house I have to prepare for that, so here are some things I do…

I don’t try and clean everything in one day, because I don’t want to pay for it fort he next week. I clean my house one section at a time, and I find it’s much easier that way. Also, if you have friends and/or family near, don’t be shy to ask them for a hand. I’m sure they would love to help you prepare. If all else fails, see if you can have someone clean your house for you. I know that there are a lot of cleaning services out there that are really expensive, but if you shop around, you might be able to find a deal. You may also talk with the National MS Organizations to see if they have any resources that can help you prepare for the holidays.

I hope this help you with the holiday stress… just remember to take it easy and don’t wait until the last minute when you have to rush. Plan things out and don’t be afraid to ask for help when you need it. I’m sure your family and friends would love to help you out but they might need to hear that you need that assistance.

I hope everyone has a good Thanksgiving!

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A Sneak Peak

On Sunday, November 18 at Seton Hall University in South Orange, NJ, MSAA and Swim for MS Ambassador and US Olympic Swimmer Missy Franklin worked on a series of public service announcements that will soon air across the country about the Swim for MS program. Below are a few pictures from the photo shoot. Don’t forget to dive into action with the Swim for MS program! Learn more by visiting SwimforMS.org!

 

 

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My MS Manager

A friend of mine has a little conversational quip whenever we’re stumped; when we don’t know who won yesterday’s football game, what the name was of that guy in the movie we just saw, or where the best place is to grab coffee in Midtown, he’ll say: “If only we had some sort of device that acts like a computer, small enough to fit in our pockets, with advanced search technologies. Wouldn’t that be neat?”

In a world where we have grown accustomed to having quite literally everything at our fingertips, the last and probably most important area that has been lacking is health and medicine. Sure, we have diet and exercise apps, calorie counters and WebMD. But what if we were able to have an app exclusively dedicated to helping manage a condition, disease, doctor’s info, and health records? An app that presents you with current up-to-date news topics and innovations in that field, hospitals, gyms, and local resources plotted out on your smartphone’s GPS exactly where you are, a place to journal and store all your results, symptoms logs and flare-up entries, in order to have more meaningful, detailed visits with your doctor… what a dream that would be.

That app for MS has been realized with My MS Manager, thanks to Ringful Health and MSAA. The first version for the iPhone is already in-use. And now — the app is available to many more people on Android.

I was floored when MSAA told me about the app in our first meeting.  It’s genius!

For me, the app has changed how I live my life with MS. It means that I can live my life with MS.

As an active photographer, often traveling, my routine can so easily get lost in the shuffle. “What day is it?,” I’m often asking myself. Time-changes and inconsistency with sleep and diet can really throw anyone off, especially someone trying to manage multiple sclerosis.

Now that I have the app, I never skip a beat!

Medication is on-time and never forgotten. Catching up on MS advancements, news, and events in my city or globally while I’m sitting waiting for a train, bus or plane is easy. Finding a doctor, hospital, gym, or health food store or restaurant in a new city is as easy as it would be at home. My doctor’s visits are maximized and efficient, leaving us extra time to spend talking about things like how his kids are doing, or what he thinks about a new MS drug or diet approach.

The peace-of-mind that comes with carrying all my relevant MS information with me in my pocket, should I need it in an event or emergency, or just want to find a healthy place to eat while I’m traveling, helps me to free my mind, take a break from MS, and go about my day.

To download My MS Manager for your smartphone please visit www.mymsaa.org/mobile

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MS as a Blessing

What began happening to my life and the way I saw it as a result didn’t surprise me as much as it did inspire me. MS, after all, has helped shape my life and career.

I began looking at everything I did a little bit more carefully. Apart from staying on-track with medication, I began waking up earlier, working out more, going to yoga and swimming, learning new things all the time, reading the news and more books and eating healthier. I went to more museums, parties, social gatherings. I started writing for fun and sometimes getting published. I started taking chances, asking for help, and hearing yes. I was fueled by hope, and by gain, ad hominem, and really didn’t fear losing anything. And that’s how I am right now.

In a way this diagnosis provided the discipline I needed and I know wasn’t getting before. That’s not to say certain things are and won’t be compromised; but as the most important things have come into focus, my happiness has improved suddenly and immeasurably.

The Multiple Sclerosis Association of America (MSAA) asked me to be their first national ambassador in the fall of 2011. Standing in the middle of Times Square, I almost dropped the telephone through the subway grating — a million emotions rushed through my mind. I was feeling honored, fortunate, and inspired. But as with all major decisions, there were a few immediate doubts.

I deliberated it with my publicists and I had a meeting with several members of the staff at MSAA, I thought about it even more, and when I said “yes” to them and to MSAA, my story went public. Press releases, articles, Wikipedia page, etc etc.  Would this mean I miss out on opportunities because people are scared of an unfamiliar disease? Weeding out riffraff clients? I never cared an inch whether people judged me for any reason before, so, why start now.

This position gave my photography – doing what I love most – a whole new personal significance. It spun me around full circle; I was honored that such a big-hearted heavyweight in the fight against MS saw something in me to represent their ideals and speak on behalf of their mission, helping them  reach their goals.

Now I have the clarity of my limitations, sharpening and shaping my happiness. Colors have gotten bright again in the space I move around in, and I have comfort in knowing that when I can drop this one little story in with the oceans already full of them, it’s one more person saying something, and one more friend that knows a little bit what it’s like.

As ambiguous a condition as MS is, we can treat it, help it, acknowledge it, move around in our lives, and be who we are.

One of the best lessons I’ve learned is that I can’t control my circumstance, people, or exterior situations. What I can do is control my reactions to them, and live on. MS of course is far from ideal, but it is true that who I am, now, I’m better for it.

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An Introduction

By profession, I am a music portrait photographer running around in such big cities as New York, Los Angles and Austin. By circumstance, I am a 26 year-old who happens to have MS.

That last bit can be a bother, but I like it much better when it isn’t.

Here’s a little bit of the backstory:

In 2009, I was attending Pepperdine University. One day, I ran out of one of my hardest business class finals, and jumped in the car. I had to get downtown to the photography studio to start figuring out how we would engineer this set idea for a really ambitious and rapidly approaching photo shoot. I buckled myself in, turned the radio on and as I shifted my gaze over my left shoulder to pull out of a tight parallel parking spot, I noticed everything double and separate. I rubbed my eyes. The further left I looked, the farther away everything got from each other. I couldn’t tell which the “real” road was and which the “other” road was. I rubbed my eyes again, squeezed them shut and re-opened. There were two pictures of the same world and I could not tell which was mine.

I knew that I was probably not taking care of my body as I should, being a 22 year-old college student (Stress… check; lack of sleep… check; probably not eating enough… check). Off to the ophthalmologist I went for further evaluation. The lens prisms he prescribed to modify my eyeglasses with, only corrected the double vision sometimes. This was not muscular; it was a nerve issue — the plot thickened and we reacted.

A gauntlet of tests ensued that summer: MRIs, EKGs, EEGs, blood work, nerve tests, Spinal tap, antibiotics. I was a healthy 22-year-old, and all of a sudden I was a patient in hospitals, with doctors of every specialty trying to diagnose me.

There were results that pointed to multiple sclerosis (MS), but nothing was conclusive, and some of the results that raised flags were results immediately contingent on other situations that weren’t mine. All other possibilities were diseases too rare, obsolete, or required symptoms I didn’t have and wouldn’t get for whatever reason, so were immediately ruled out. Complicating things further, each symptom that I had on its own were all circumstances perfectly healthy people have all the time.

What happened in my mind after all of this new hospital stuff was full-fledged “western medicine distrust.” I watched chemo ultimately kill my dad four years earlier, and I felt like I knew the hospital/pharmaceutical politics. It seemed doctors were trying to diagnose me with something so hard that they couldn’t pin, that I didn’t believe I had. Hospital bills, drug reactions, spinal tap complications, and anesthesia all followed. I was plugged into the wall, there were needles in my arm, my spine; I was terrified of every result. There’s just something inherently frightening about going this deep into such a thorough search of your complete physical makeup and having to sit back and wait patiently each black-and-white result, over, and over.

The double vision went away on its own after about a week, and I went back to business-as-usual. A second major symptom did not come on until a year later: a numb, tingling sensation from my knees down and in my hands, tips of my fingers. It was then when my doctors agreed; it was time to begin to discuss treatment.

My goals and career to me seemed to all of a sudden be in jeopardy, at the quickly developing and bright-eyed age of 22. The more I began understanding MS and my own new set of circumstances, the more my life slowly began to come into focus.

Thinking back I’m sure there probably were smaller, more seemingly insignificant indicators that could have helped point to the MS sooner, but that’s neither here nor there. What matters is that it’s clear that I have MS, no more tests and questions or unknowns there. Although there is no proven cure, there is a lot that I can do to manage it, which incidentally are all things I should have been conscious of anyway to live a happy and healthy life.

Read on: MS as a Blessing

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New Swim for MS Website Launches!

It’s Finally Here!

MSAA has launced our brand-new Swim for MS website! Check it out by visiting SwimForMS.org!

If you haven’t heard, Swim for MS is a national fundraiser in which volunteers are encouraged to create their own swim challenge while recruiting online donations to support MSAA and the MS community. You can participate individually or recruit other swim enthusiasts to form a team.

It’s as easy as 1-2-3!

  1. Create your swim activity
  2. Set your challenge goal
  3. Recruit online donations

With our new and improved Swim for MS, you will now receive a Swim for MS Welcome Kit (coming soon) in the mail after completing your registration, which includes:

  • One Swim for MS t-shirt
  • One Swim for MS towel
  • 20 Swim for MS wristbands

To register, please go to SwimForMS.org. After you complete your registration, select Access your Participant Center Now to create your online fundraising page! To inspire you, please check out our Swim for MS Profiles for examples of how to create your Swim for MS challenge.

 

Thank you for your support, and happy swimming!

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