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!

On a chilly Sunday morning with the threat of Hurricane Sandy on the horizon, 23,515 runners embarked on the Marine Corps Marathon (MCM) on October 28, 2012. In the group of 23,515 runners were eight members of Team MSAA, running on behalf of the multiple sclerosis community. These eight runners, dedicated the past six months to training and preparing for the grueling 26.2 mile course, which started at the Pentagon and went through some of the most historic sites in the nation’s capital. Team MSAA for the MCM, raised almost $9,000 in support of MSAA’s mission of enriching the quality of life of everyone affected by MS. Team MSAA was comprised of individuals from across the country. You can read about them by visiting the Team MSAA page and I encourage you to do so, as their personal stories are very inspiring!

Thank you Team MSAA!  You did great work!

Here are a few pictures from race day!

Team MSAA members Joel and Shari get ready to start the 37th annual Marine Corps Marathon

Runners are getting ready to start the Marine Corps Marathon

It is easy to get caught up in everyday stress, such that when a holiday or special event approaches you may feel added stress instead just enjoying the day. Maybe today you have a child or grandchild who will be going out Trick-or-Treating or participating in a costume parade, but even if you don’t Halloween is not just for children.

Even without little ones around, you may enjoy decorating the house in spooky decor (a wonderful co-worker here at MSAA picks a theme every year and really goes to town setting up an elaborate scene on his front lawn for visiting Trick-or-Treaters—see below). We don’t all go to such great lengths, but you may enjoy baking treats or handing out candy. If you do celebrate Halloween, even in the simplest of fashions, try to take a moment just to savor the day and focus on whatever it is you love about this holiday!

* For anyone who has been impacted by hurricane Sandy, our thoughts are with you and your families at this time.

So, let’s face it… cognitive issues/memory issues play a big part in living with MS. Then the fatigue that we deal with along with all of the other symptoms, play a big part in our daily lives.

With all that we have to live with, how are we supposed to “remember” things… like paying bills, appointments (and what we are going to need for the appointment), symptoms, medications, medication refills, the list is endless.

I, for one, have had a very hard time when it comes to remembering things that I’m supposed to… and having two little kids adds on to the list of remembering things. You know that “fog” you feel when it comes to anything you have to “think” about… it’s a struggle, right? Sometimes in my “fog” state, I have accidentally put the milk into the pantry, instead of the fridge… and I know I’m not the only one.

Since my diagnosis in late 2010, I’ve found little tricks along the way to help me remember things, though things do still slip, at least it’s not everything…

So, for any kind of bills, appointments, or anything I have a “deadline” for, I set up an alarm and not just one. I set up multiple alarms on my phone, computer and in some cases, it might help to have a family member or friend remind you, or even set an alarm on their phone. With bills, if I can, I set them up on “auto-pay”, this way I won’t have to worry about not having electricity because of my memory issues.

For remembering medications, I have a document I saved on my computer and I keep a printed copy in my wallet. I also have it written down in my “notes” application on my phone. There is also a lot of “apps” out there to help remind you to take your meds, or you can set an alarm on your phone. The MSAA even has a free app if you have an iDevice called “My MS Manager”, it’s a very helpful resource I use that has a lot of tools, check it out when you have time.

Please note: My MS Manager will be available on Android in the upcoming weeks. Please check back for the official announcement.

For my medication refills, I set them up on the “auto-refill” with my pharmacy, so that I don’t have to worry about making a refill in time and I’m e-mailed when my prescription is ready for pick-up.

With my symptoms, well I deal with a lot of the same symptoms everyday, but I do take note of any changes in my symptoms. I try to put this on paper and in my phone. I’ve also found it “better” to have multiple places throughout the house for me to write down things on, so that I can put it all together before my next neuro visit. I have found that a dry-erase board is something you can’t misplace when you have it stuck on your wall in a “general” area of your house.

All of these things have helped me a lot when it comes to remembering everyday things and making sure that I can update my neuro on how I’m doing with my MS. I have a certain journal that I got, it’s labeled My Story, and that’s basically where I keep all of my MS information and I have it near me at all times, either in my purse (it’s a small booklet) or in my car, or in the kitchen. I have also set up a “reminder” on my phone to not let me forget my journal when going to an appointment.

MS is already a difficult illness to live with, so I’ve tried to find ways to make it just a little bit easier with day-to-day tasks.

As we all know, MS doesn’t have an “age limit”… It’s not very often you come across the younger generation that have disabling illnesses, so a lot of onlookers give you that “what the heck is wrong with her…” look.

I was 22 when I was diagnosed in August 2010 and I live in Central Texas. My life has completely changed since I was diagnosed. I know a lot of people who are my age and have MS or a lot of people with MS in general, worry about dating, marriage, kids, etc.

Well, I have two kids that are three and six and I’ve been married for almost seven years, so that’s not something I really had to think about for my future with MS but I can tell you this, being a young married couple with kids is hard enough and when you add MS into the mix, it is not an “easy life”.

I now have to worry about… what’s the temperature going to be like outside, are my kids contagious when they get sick, how am I going to clean the house or keep up with the laundry, the list goes on and on…

After I was diagnosed, my good “friends” were no longer… it was very hard for me to handle with everything I had going on in my life. Now I have come to realize, that they were never the friends I thought they were to begin with.

I had received my Associates Degree in Criminal Justice two-weeks before I was diagnosed with MS, I even had a job interview set with the county jail to be a correctional officer, but I was diagnosed the day before the interview when I was hit with a huge flare… I couldn’t take the written test because I couldn’t see straight.

I tried to go back to school for my Bachelors but during the first semester my GPA went from being Honors Level to barely meeting the minimum GPA requirements for the University. I decided that I needed a break from the stress and I didn’t want to ruin my GPA completely.

I have a handicapped-parking placard in my car and I don’t “like” to use it unless I really need to. When I have used my parking placard I see everyone staring and whispering (it reminds me of being back in high school)… I’ve even had people tell me, “You’re a disgrace for abusing your grandparent’s parking pass…”

I’ve finally gotten to the point where I’m not AS irritated with the ignorance of onlookers. I don’t get as upset or angry and I don’t lash back out at them anymore.

As for having a relationship and being young with MS… it’s a struggle but I’m glad that I have the support from my husband. Yes it’s stressful, but what relationship is perfect? I’ve told many other young people with MS that if the person you’re in a relationship with can’t stay in a relationship because of the strain of MS, then you may need to accept that and move forward and that goes for the friends issue as well.

I went from being a very active person, always outside… loving to do yard work and going to the lake, to being home a lot. I still TRY to do these things when I can, but lets face it, in the Texas heat… I’m a couch potato. I am now more focused on my life and well being than the drama of having fake friends and doing what “healthy” people my age do. I know that my choices on how I live my life now will reflect on what happens in my future and that’s the big picture. I don’t expect anyone my age without MS to understand that, and that’s okay.

MS has taught me many things… But most importantly it has taught me… If you live your life with negativity then that’s all that you will have surrounding you. But by embracing life for what it is, and making the most of everyday… You know you are doing everything you can, not only for yourself but also for those surrounding you to make this life the best it CAN be.

I’m not happy I was diagnosed with MS, who is… but I can say that I’m happier now with my life than I was before.

From my experience, I’ve known families to be supportive, not supportive enough, or way TOO supportive. It’s something that a lot of us living with MS have to deal with… and how do we address this issue?

I find it… difficult at times, to handle my family, well some of them. The other part of my family… is quietly supportive (which I enjoy… once I found out that they were still supportive in a “back burner” kind of way).

So how are we supposed to let our families know what amount of support we need from them. If they are too supportive, it’s hard to tell them to “chill out” without upsetting them, because they are doing it out of love and general concern for us.

Since I have a rather large family, I’ve dealt with a lot of different “types” of family support. When I was first diagnosed, I was scared and depressed and in the middle of a really bad flare up, I didn’t want to talk to anyone yet my phone was ringing off the hook. I wasn’t trying to be rude by not answering; I just didn’t have anything to say.

I’ve found that the word “I’m sorry” is said to me a lot, since I’ve been diagnosed and I tend to get irritated at times, by hearing it constantly. I understand that NO ONE wants to see a loved one get diagnosed with MS, but life happens… we can’t do anything to control it.

I’ve finally found my ‘balance’ when dealing with my family and their support. Some people in my family show they care and give me the support I need, in just the right amounts. It’s enough to let me know that they love me and care about me, but since it’s been two years since I was diagnosed… the check-ins aren’t as frequent… which it’s kind of a relief. I had told my mom that I love the fact that my family cares so much, but at times, it was too much… I think the “word” got around and that helped my support system become what it is today.

In other parts of my family, it seems as if they don’t really acknowledge my MS, unless it’s obvious (physical signs of my MS). I know I’m not as close to them as others in my family, but it’s always nice to know that they care. I don’t want to ALWAYS talk about my MS to them, but I did drop a hint, that it’s nice to hear from them every now and then.

Then there are some that just flat out ignore my MS… which is irritating in a lot of ways, because I can’t ignore my MS…. not even if I tried to. MS is a life changing diagnosis.

I’ve found helpful tools online and at MS Conferences, to help “show” my family what MS is like, in some ways. It’s so hard to tell them how we’re feeling… and we can never explain it to them or show it to them, where they will completely grasp the feeling, but we can get close…

All in all, I’ve let my WHOLE family know, that I love the support they give to me… even if it isn’t constantly checking in on me… I finally found the ‘dose’ of support that I need when dealing with my MS, and it’s finally working itself out with everyone.

Here is a helpful tip to remember; if someone asks you what MS is, give them information in spurts. This way they can really take in what you’re saying, when you are explaining it. I’ve learned that if I overload their brain with information, they forget some of the important details…

A saying comes to mind, that I’ve used with my family and close friends, “I don’t want your pity… but I NEED your support.”

OK, let’s say you are experiencing a new or worsened symptom. Who you gonna call? Not Ghostbusters! You’re going to call your MS healthcare provider and let them know what’s going on. So the process should look something like this. Some of the evaluation may occur by phone or at an office visit. Let’s assume that we’ve thought about fluctuations in baseline symptoms and we’ve ruled out any underlying infections. It looks like you are having a true relapse.  Now what?

Research suggests that whether we treat the relapse or not, the ultimate long-term recovery will be the same. Treatment may speed up the recovery, however. In some ways, the decision to treat or not is based upon how much the relapse is affecting quality of life. For example, let’s say you wake up one day with some numbness in your foot. The numbness is annoying but really does not limit you in any way. Based upon the mild nature of the symptoms, you may decide to just watch and not pursue any treatment. On the other hand, if you wake up with decreased vision in an eye or significant trouble walking, you’ll likely want to go ahead with treatment. The recovery from these attacks will likely be the same whether we treat them or not. The speed of recovery will usually be faster with treatment. Even if you are experiencing a mild relapse, make sure to let your healthcare providers know. Relapses need to be documented as their presence may factor into how well we think your long-term therapies are working for you.

What we can do to treat relapses? Well, our first duty is to try to prevent them in the first place. This is the role of the “disease modifying therapies.” Avonex, Betaseron, Extavia, Rebif, Copaxone, Gilenya, Tysabri and Aubagio are used in hopes of seeing fewer relapses, fewer new MRI lesions and slowed progression of disability. In a perfect world, these drugs would stop MS dead in its tracks for everyone who uses them. While many people do see these results, some people will still have relapses in spite of being on therapy.

Let’s look at some treatment options for MS relapses. Remember, the goal of these drugs is to shorten the duration of the attack. Your ultimate recovery may be the same with or without treatment. Intravenous steroids are the primary go-to drug for treating relapses in the U.S. Typically, 3 to 5 days of intravenous Solumedrol (methylprednisolone) is given. This may or may not be followed with a tapering dose of oral steroids. Personally, I prefer to give three days of I.V. Solumedrol 1000 mg daily with no prednisone taper. Our Canadian friends lean more towards oral steroids. High doses of oral prednisone (600 – 1250 mg/day) can be given for 3 to 5 days, again with or without a taper would be one example. Common steroid side effects include mood changes, insomnia, elevated blood pressure, elevated blood sugars, lowered potassium, weight gain and premature cataracts.

Acthar gel (ACTH) is an alternative to the usual steroids. ACTH can be given by intramuscular or subcutaneous injection and results in the increased production of natural steroids. ACTH has also been shown to have other beneficial effects in the immune system unrelated to steroid production. ACTH is typically used in people who have not responded to steroids or cannot use steroids due to side effects. Other alternatives to steroids include intravenous immune globulin (IVIG) and plasma exchange.

In summary, MS relapses can be frustrating and scary. It pays to know what you can do to help recognize them and sort them out from pseudo-relapses and symptom fluctuation. Make sure you are doing everything you can to prevent them by being on an appropriate long-term therapy.  Finally, know what your options are for treating a relapse if you have one.

Relapse. Exacerbation. Attack. Flare-up. These are all terms for the same thing. What is a relapse and what can you do about it if you have one? The strict definition of a relapse is a new or worsened neurological symptom lasting at least 24 hours. There should be no better explanation for the symptoms. Relapses are one of the defining features of relapsing-remitting MS. They become less frequent with secondary-progressive MS and really should not be seen at all in primary-progressive MS. Sounds simple, right? Unfortunately, it’s not always so easy.

The very nature of MS is that even when people are in “remission” they still have symptoms. Things like fatigue, walking problems, bladder issues, pain and cognitive challenges may be present even when you are stable. Many of these baseline symptoms tend to wax and wane. In other words, many people with MS have good days and bad days. Sorting out these fluctuations from true relapses is not always straightforward. Things like stress, heat and sleep deprivation may all temporarily increase some symptoms.

Another challenge is the possibility of a pseudo-relapse. “Pseudo” does not mean that the symptoms are not real. It means that they are being driven by an underlying illness, most commonly an infection. Both urinary tract infections and even common colds will frequently result in an increase in things like weakness, numbness, visual changes, etc. For some people, the first symptom of an infection may be an increase in neurological issues. In addition, a pseudo exacerbation may also be triggered by the response of an MS patient to heat.

Relapses are important for many reasons. The unpredictable nature of MS attacks can lead to worry and anxiety. In my experience the first year after a new MS diagnosis can be the most challenging. The newly diagnosed person may struggle with the meaning of MS for life plans, new medications and the fear of the next attack. Every MS relapse is associated with a chance that there will be a new long-lasting symptom. One study showed that 50% of people experiencing a relapse still had residual new findings on neurological examination 3 months after the attack.

We’ll discuss treatment options in part two on Friday.