I Better Do It Now Before I Can’t—Community Thoughts!

Posted on August 31, 2016 by MultipleSclerosis.net

Recently, one of our community experts wrote an article about the struggle to find a balance between taking advantage of fleeting, “good” days with MS, and potentially overworking your body to the point of putting yourself out of commission even longer. We received an outpouring of responses from you in the community, ranging from “OMG! Me too!” to personal stories of finding your own balancing point. Here are some the things our community had to say:

Feeling the Pressure of the Balancing Act

“Oh boy this is the story of my life!! I get that one morning that I feel good (not great) and I am on a mission. By the afternoon, I am starting to pay for it. Factor in the heat or cold, then it is a whole new story!”

“I do the same darn thing…will I ever learn? Those few and far between good days are so great and we can’t help but to take advantage of them. It’s like drinking too much and being surprised we have a hangover. But jeez, we pay for doing something not that fun, like vacuuming!”

“I have a ridiculously difficult time with my “time-to-stop” meter; I seem to operate in an all or nothing mode…if I can remember what “all” entailed in the first place!”

“Perfect timing for me to read this, “so true to my life” article. I’m having one of my “good” days and trying to accomplish as much as I can while I can. Funny how our minds can whirl with so much activity, but our bodies don’t cooperate”

Trying to Take Things in Moderation

“This describes me for sure. I feel so good about myself on those “good” days because I get so much done, but as we well know, another “good” day is always followed by “bad” days. So if things get done, fine. If they don’t get done, well that is fine too. This is one of those things you just have to accept when living with MS”

“I’ve had to train myself to “make hay while the sun shines” and (try) to accept that sometimes good enough is…good enough. I still struggle with overextending myself though”

“This is so true. You feel good and get started with one thing that turns into more as you go and always over do it. I want to do things like I used too, then the monster inside me kicks my butt down for days! We all do what we can on our good days”

“Depends on what I do—but one strenuous day I am out of commission at least the next day. Try to do what I can and after more than 20+ years with this beast, I have finally learned to listen to my body and stop most times when it gets to be too much”

Managing the Unpredictability of Life with MS

“Hardest thing for me is to figure out exactly how much I can do each day and not lose my tomorrow. One day I can accomplish a lot, but another day those tasks will put me down for a day or two. Thankful for my good days, but I HATE the inconsistencies of MS”

“I get so happy and excited when I feel quasi-normal. I try and do as much as I can. I do this constantly, then end up unable to move for a couple of days. Just when I feel I am understanding a rhythm to this truly wacky disease, it throws me for a loop. The learning curve is a slippery slope”

We were so overwhelmed by your great responses, and it’s clear that you are not alone in your battle to manage taking advantage of rare good days, while still taking care of yourself to prevent further setbacks. Let us know how you manage this balance, or tell us about any of your experiences!

My MS Journey – Jessica’s Story

Posted on August 29, 2016 by MSAA

One of the hardest things about unexpected change is suddenly having a ton of questions and not enough answers, particularly when you are newly diagnosed with MS. Questions can range from: “what is multiple sclerosis and what are its symptoms?” to “how is MS treated?” to “what does having MS mean for your life?” However, these questions are never limited to someone recently diagnosed with MS.

My MS Journey is a resource for people at all different stages of their life with multiple sclerosis. There is “Just Starting Out” for the newly diagnosed, “Staying On Course” for people who are more familiar with how MS affects their body, and “The Seasoned Traveler” for anyone who has lived with MS for a longer time and may be looking for different information. All three sections of My MS Journey offer a listing of resources including videos and articles to help answer questions as life continues to change around us.

Check out Jessica’s story above for how she felt after being diagnosed with MS.

Cut the Deck and Deal the Cards

Posted on August 26, 2016 by MSAA

By Lauren Kovacs

This is a big ticket for those with MS.

We never know what our hand will be. Even frequent shuffling can deal you a bad hand.

Our crystal ball has been smashed. For me thankfully, I had 18 years of a mild MS course. I was able to work, get married, have kids and mostly be like everyone else.

I had been a college athlete and I never thought that being physically active would end. As an adult, I took figure skating, did Irish dancing and clogged. I was always up for something to excel at.

The changes associated with declining mobility are extremely hard. New ways of doing things became an essential skill. Sometimes, there is no way to really deal with the physical betrayal. When it comes to medical equipment, picking fun colors seems to make necessary medical equipment less medical.

Changes can come frequently. Cards are often shuffled and dealt quickly. First, I started needing a cane. No big deal. I bought a blue fish cover for it. A year later, the walker came into the game. I made sure to get one in pink with big wheels and a cool frog bag attached. Then, another hand was dealt. I needed a wheelchair. Not cool. I was not happy.

I again figured a purple one would be fun. Going with devices as non-medical as possible was a good way to deal with that change. I made them extensions of me. A little pinch of personality and a little bling can go a long way. I didn’t fold and stayed in the game.

Last year we took a trip and I needed to bring a walker to use in the cabin. We flew, so I bought a gray one that folded into a garment bag. I used duct tape with butterflies to make it fun.

I really hated the idea of using that walker, but people saw the butterfly duct tape. I was able to enjoy our trip a bit little more. It was still hard to get around, but I felt less disabled.

Making change fun is the only way I can deal with mobility changes. A pink walker, a purple wheelchair or butterfly duct tapes were simple changes that were not medical. Make changes as non-medical as possible, when it comes to mobility equipment. I was dealt a bad hand, but injecting fun is a simple way to make a bad hand livable.

Dealing with an Unexpected Change with MS

Posted on August 24, 2016 by MSAA

By Matt Cavallo

Multiple sclerosis is an unpredictable disease. I’ve been living with MS for eleven years now and just when I think I am getting the hang of it, something changes and I’ve got to start all over again. When the change is unpredictable, that is when it can be the hardest. This was the case for me when the results of a recent blood test forced me to reconsider my treatment options.

I have been on the same treatment for the past nine years. During that time, my MS was well controlled. My long term plan was always to stay on this treatment. The reason being that I tolerated the treatment well. The only relapse I had during the previous nine years was when I was unable to receive my treatment.

Then came this summer. As I sat across from my neurologist, I knew that something was wrong. He explained to me that my routine lab work concerned him. He felt that my treatment now presented an elevated risk and that it was time to explore new treatment options. I didn’t know how to react. When I came in for my appointment, I wasn’t prepared to discuss changing to a new treatment.

There were many different emotions that ran through me all at once. The first was fear. I was afraid of the unknown. I knew that I tolerated my current treatment and didn’t experience relapses. There was no way to guarantee that I would experience the same kind of positive outcomes on a new treatment. Also, would that treatment have the same kind of efficacy that I had become used to over the past nine years? On the flip side, would staying on my current relapse expose me to the risk of a potentially fatal side effect?

In addition to the fear, I became angry and started to blame myself for my labs changing. I didn’t know what I did that was different. I was in disbelief with the results and wanted another test to confirm the findings. I left the appointment in denial thinking that the test was wrong and that my risk was still relatively low, so theoretically I could continue my treatment without harming myself. I told my neurologist that I needed some time to think about it and scheduled a follow-up in two weeks.

During that two weeks, I found myself depressed. A second blood test confirmed my fears. I found myself at the crossroads needing to make a difficult decision. On one hand, I could continue down the same familiar road I had been traveling for nine years, but with an increased risk of a scary side effect. On the other hand was a new road and I was unsure what the future would hold on my MS journey. Then came my follow-up appointment.

I was nervous sitting in the waiting room. Even though I had two weeks to consider my change in treatment, I really didn’t know what I was going to tell the doctor. I just knew that whatever I said was going to result in change. I knew that even if I continued on my current treatment that there was increased risk and with that would come increased monitoring and a new sense of worry that didn’t exist before the lab results.

Once we got past the pleasantries, my neurologist looked me in the eyes and asked if I had made a decision. Without thinking about it, I blurted that I would try the new treatment.

With that, I felt a weight lifted off of me. I finally accepted that I had to change and the only way that I would be successful would be to embrace and accept that change. However, I did need to experience all of those emotions before I was open to accepting the change.

The thing that I learned from this situation is that no change should be taken lightly. Pasteur once said that chance favors the prepared mind. In my case: I evaluated my neurologist advice, took a validation blood test, researched the recommended treatments, talked to my wife and loved ones about the pros and cons, and in the end made an informed decision. This was not a change I wanted to make, but the unpredictable nature of MS thrust this upon me. In the end, I am at peace with my decision and embracing the road ahead.

*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

Metamorphosis: Coping With Change

Posted on August 22, 2016 by MSAA

By Meagan Freeman

All things are temporary, including darkness.

Butterflies are a wonderful example of this. Look at these incredibly beautiful creatures, fluttering and dancing on flowers like living magical fairies from some other world.

These are some of the most graceful, elegant creatures on Earth, but they did not start out this way, did they? These creatures began as rather ugly caterpillars and worms. They become beautiful after a long period of change.

This period of change is spent alone, in darkness, with no input from the outside world. They depend on no one during this time, only themselves. This metamorphosis, or period of transformation, is one of the most miraculous biological phenomena on our planet.

These creatures completely transform every aspect of their lives, and they do it alone. Lessons of our own can be learned just by observing these creatures. Our period of darkness and transformation begins with our diagnosis of MS. Most of us experience a long period of darkness and crisis from that moment on, lasting for months, or even years. Beginning at the moment of diagnosis, we must completely change our self image. This is a difficult process, and no one can really help us through it. We must resolve this new identity within our own minds, and it takes time.

I often refer to my own years following diagnosis as my “metamorphosis.” I changed entirely, and I am not the same person I was before August 24, 2009. Change is difficult, painful, and uncomfortable. Change is awkward, frightening, and exhausting. But, change is an essential part of life. All is temporary, every single thing in this world. This helps me get through the tough times, because I am reminded that the darkness will not last forever. All is temporary.

The transition from “healthy” to “MS patient” is not immediate, and we should allow ourselves time to adjust to this new identity. After all, we spent decades of our lives as healthy people before we obtained this new label. How can we adjust to this overnight? The diagnosis of MS is made on one specific day, and it is shocking.

After time, I learned to accept this diagnosis, though it still makes me angry, frustrated, and sad at times. The first year after diagnosis was the most difficult, when the mind struggles to accept. Slowly, though…I began to realize that this was reality. This was part of me, whether I liked it or not. What else was there to do other than accept it? I learned to predict my symptoms more efficiently, to understand which symptoms were familiar and which were new.

We each spend a period of time transitioning, accepting, and changing after diagnosis. The most important thing to realize is that it takes time. The way you feel after initial diagnosis: The shock, the anger, the fear…won’t last forever. Your life will go on, and it may even be wonderful. MS does not mean that life is over, rather it means that life has changed. Change is never easy, but it can often lead to great things. Try not to fear the metamorphosis, because you never know how beautiful your life might end up being in the end….

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

Change Perceptions

Posted on August 19, 2016 by MSAA

By Lisa Scroggins

“In this world, nothing can be said to be certain, except death and taxes.” – Benjamin Franklin

I would argue with Mr. Franklin that his famous aphorism should be amended to include the word “CHANGE.” Change happens whether we want it or not, and this is true for all people. However, for people with MS, change, generally, tends to be unwelcome.

Maybe I need to change my perceptions of change.

Maybe, since change is going to occur, I need to change.

You probably know some older people who frustrate you with their rigid approach to life. Those people whose most common complaint is something to the effect of this:

Young people today are shallow and don’t know how to work!

Or this…..

She is such a malcontent. Always complaining about MS symptom this, and MS symptom that. She should just DEAL with it! I’m not even sure that’s a “real” thing.

For me, change in regards to my MS has generally been negative. Changes, especially in the past few years, have meant less mobility. For others, it may mean cognitive difficulties or the loss of another ability. Given the vast array of symptoms presented by MS, there is almost no limit to the loss (DISability) that might be sustained. It’s exhausting, dealing with MS, or as I have written in the past, “I’m fatigued and I’m tired of it!” (Pun is definitely intentional.) I am one of those people who have been dragged into my new normal, kicking and screaming and protesting loudly all the while! Inexplicably, I have recently changed my resistance to change in one small way. For the most part, I get annoyed with the way that many people seem to prefer watching a video for everything. It’s probably related to my learning style, but I much prefer to read about something. For example, when I Googled “multiple sclerosis symptoms,” I got a huge list of links, and many of them were to recordings, a great deal of which were on YouTube, with some to news broadcasting stations and to WebMD. Typically, I would ignore those and look for the links with lists.

But I stumbled upon a new link and a lot of the information there is in recorded videos. The information is new to me, and I find it very helpful. I have actually listened to and watched several of the videos. This particular website was created by a person with MS, and I have found information there that was new: http://www.msviews.org/msviewsandnews4/ I have to fess up: I only listen to some of the videos there and don’t always watch, so I guess I remain stubborn. The website was previously known as Stu’s MS Views and News, but Stu has managed to get a lot of help on his side and his website has grown a lot. There are partnership links there, and you may or may not be impressed by those, but in any event, there is probably something there for you to take in. I really enjoy Dr. Ben Thrower, who is a neurologist and offers a lot of information in a form that people without a science background can understand.

I was diagnosed a long time ago, and have seen many headlines that read as though the misery that is MS was about to end! HUGE breakthrough! Promising treatment! All the excitement has worn thin for me, and I view such headlines nowadays with skepticism. Remembering the time when I was diagnosed means telling you kids a story. It was the early nineties. My resources were limited: the public library, my doctor, and any local support groups. Email was nonexistent, as was the World Wide Web. There were a few national organizations, and they had 800 numbers, and mailed out written publications. I don’t remember when or how I learned about the MSAA, but it was not the first organization devoted to MS that I knew about, even though it was founded in 1970!

The truth is that a lot of change in the field of MS has vastly improved:

The availability of information
Treatments: there are more than a dozen treatments available
Organizations that help patients dealing with MS
Research into the etiology of MS

Now, there are many organizations specifically formed for us, the MS patients, and information is overwhelming. It can be difficult to navigate and even to discern which information is reliable. The pace of change is brisk, indeed, which I believe is positive for us.

Dealing with change can be done with grace and likely will benefit you. I have changed my perception of videos about MS.

What change in dealing with change will you undertake?

New Recipe of the Month – Homemade Banana Bread

Posted on August 17, 2016 by Melissa Young

Do you often think about trying a new recipe or like to watch the cooking channels? MSAA is proud to announce the New Recipe of the Month! Each month a new recipe will be shared with you to try and enjoy.

The first recipe I would like to share with you is my homemade Banana Bread. I like simple-to-follow recipes, and this is definitely one of them. It takes about 10 minutes to prepare and one hour to bake.

Ingredients:

½ cup vegetable oil
1 cup sugar
2 eggs, beaten
3 medium extra ripe bananas, finely mashed
2 cups wheat flour
1 teaspoon baking soda
½ teaspoon baking powder
½ teaspoon salt
1 teaspoon vanilla
3 tablespoons milk
Chocolate chips or nuts optional. Hand mix into batter

Directions:

Cream together eggs, vegetable oil and sugar.
Add mashed bananas.
Combine well.
Sift together wheat flour, baking soda, baking powder and salt. Add to creamed mixture.
Add vanilla and milk.
You can also add chocolate chips or nuts if you would like.
Pour into greased and floured loaf pan.
Bake at 350 degrees for 1 hour.

Happy Baking!

*We hope you enjoy our Recipe of the Month selections on MS Conversations. Just remember: these entries may not necessarily be a part of an MS-specific diet; these are simply recipes compiled from MSAA staff either from their own family recipe collection or based on recipes we think you might enjoy. As always, make sure to consult your doctor about any food or nutrition questions as they relate to your MS.

MS Symptom Changes

Posted on August 15, 2016 by Angel Blair

In keeping with the theme of ‘change’ during this month’s MS Conversations, I wanted to talk about MS symptoms and how they can differ for those diagnosed. MS often comes with its’ own agenda and unpredictable course for those affected, often making it difficult to anticipate what symptoms can arise and how they can vary from day to day. And because each person’s experience differs greatly with MS, it’s challenging to try and compare situations in order to come up with guide points and specifics to learn from throughout the disease. The type of symptoms, their range of severity, and their disappearing/reappearing act can all change according to how one’s MS affects them, which further adds to the list of unattractive traits held by MS.

However, because people with MS have a great voice and have been consistent with reporting their symptoms and experiences with the disease, doctors and researchers have an abundance of information to work with for developing more symptom management therapies and treatments that could potentially help reduce these issues. There are several techniques used to treat MS symptoms, but it may take some trial and error along with continued follow-up with a doctor to find what works best and most effectively. While no two MS cases look exactly alike, each individual’s condition brings with it more power and knowledge because it’s so unique, and therefore helps to contribute to the understanding of this ever-changing landscape.

What is Your Perspective?

Posted on August 10, 2016 by Ro Washington

On our helpline here at MSAA we speak with clients every day from across the country who contact us for any number of things. Resources for assistance, information on our programs, clarification on something they saw or read on our site or in our publications and at times they’re looking for someone to speak to who they can bounce ideas off of or just have a listening ear. Recently I spoke with a client who was more newly diagnosed and called to get some broad spectrum information. What struck me at the end of our call was that the client taught me probably more than I did them.

During our conversation we happened upon the idea of changes in perspective. They recounted to me how their world had very much changed when they were diagnosed with MS, in the not too distant past, and how at first they were not sure at all what to do. There were lots of questions, some of which were unfortunately met with little, or vague answers. New terminology to learn. Medicine to juggle. Periods of anger, frustration, and sadness. New planning to do they hadn’t thought of before. I listened as they recounted one such day that found them sitting on the bedroom floor in the dark not sure of what to do next. Unaware of the time that was passing, just sitting. “This,” they told me, “was my finding perspective. I sat on the floor recounting stories to myself of events in my life, and in the middle of my thoughts I found a new way to see things.” After a good deal of time angry and upset on their bedroom floor they sat and recounted all the events that made them proud, excited, and happy. The client didn’t want those events to be the only memories with a happy connotation that they would ever have. All in the past.

The client said they pulled out some scrap paper and made lists of the things they were angry and frustrated over. Things that they felt they had lost or missed. Along with that, they scribed a list of the things they enjoyed, they wanted to do, they were good at or had interest in. This list, they said, was there perspective. This list was longer and when they read it over they found in it thoughts of how to still visit all the European countries on their bucket list, while dealing with the uncomfortable temperatures. How to volunteer and be part of their community while working in different time increments or events. There they thought of how best to use their love of blogs, working with people and photography to connect with others and raise awareness.

They said they had two ways to go about this and the one they were deciding on was to choose their attitude not to let their attitude be chosen for them. They looked at the list of things they were angry over and decided to choose their attitude toward it. Would it always be easy to change the way they thought about being diagnosed? No. But if they chose to change their perspective, not from the things they had lost, but toward the things they had and could do, and use and focus on those…it gave them a different perspective. “That,” they told me, “got me off the floor onto my bed.” Then a little while longer to their dining room table where they started to brainstorm, make some new plans and objectives keeping their MS in mind, but not letting their MS choose the plans. Perspective is just what you make it and sometimes that’s easier said than done. But we all have a choice to make in changing the way we look at things. What is your perspective?

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