Halloween

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.

 

 

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How To Remember Things with Your MS

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.

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Being Young with MS

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.

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Family and MS

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.”

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Part Two – Treating a MS Relapse

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.


 

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Part One – Defining a MS Relapse

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.

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Move On, MS

Move On, MS was originally started as a way to combine my work in the music industry with a need to create a support system for people within that community dealing with things like multiple sclerosis (MS). I held my first event at a friends’ bar in New York City. The event was a benefit concert which featured a live auction . It was a night full of friendship with people there as much to support MS awareness as they were to support me. MSAA Ambassador Anna Webber, who has now become a close friend and confidant, was by my side all night. We had music and great prizes donated by Live Nation, Roadrunner Records, Sumerian Records, Dangerbird Records, Fat Wreck Chords, Merge Records, EMI and so many more friends. That was the key word; friends. People came together as a community for that night and it felt like we could do anything. It was my proudest moment and I hope it would have been my mom’s as well. I felt that the money we raised paled in comparison to the connections we formed and relationships we cemented.

I believe it’s normal for the first time you do something like Move On, MS to see it more as something about your own state of mind and the healing and grieving process than a mission to change the world. I wanted to keep my mom  alive in whatever way I could and if she wasn’t going to be with me anymore I wanted the world to remember who she was. After it was over I didn’t feel healed; I felt like my work had just begun.

Moving on, (no pun intended) my goal was to improve upon the flaws of the last benefit and do something on a larger scale. My friends over at The Audio Perv, a popular music blog and USvsTHEMinc  put together an unbelievable lineup for their official CMJ Music Marathon showcase at The Bowery Ballroom and invited me to come along for the ride. I am humbled by the faith they have placed in me and their support of my idea. On October 18th we will come together for a night of music and Move On, MS starting at 7:00pm EST. Tickets are $10 at the door and we will  be giving away some exciting prizes all night including a guitar signed by My Chemical Romance and a photo taken of Beck and Philip Glass by Anna Webber herself that was signed by Glass.  Some of the items have been generously donated by BUILT NY, GelaSkins, Engineer Records, Live Nation and more. For more information on the event you can visit my Facebook page at www.facebook.com/moveonms.

 

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An Introduction

My name is Katie Ellsweig and in March of 2011, my mom passed away as a result of Primary Progressive Multiple Sclerosis. I was 24 years old. It’s no secret that there are a vast number of individuals  living with multiple sclerosis (MS). But MS isn’t just about them; it’s about their families and friends who live with the disease as well. It’s about the people whose lives are changed by MS, whether from their own diagnosis or that of their parent, friend or loved one.  It’s not easy watching someone who should be protecting you lose their ability to walk, eat and eventually speak. MS is a monster of a disease; one that only now as I venture into my own fundraising efforts I am beginning to fully understand. I believe that it’s important within the MS community to tell not only my story, but hers as well.

Jean Elizabeth Ellsweig grew up in Hillsdale, New Jersey. When she married my dad they moved to Campbell Hall, New York where my sister and I were born.  She was a beautiful woman; about 5’2”, slim with fiery red hair and green eyes. She loved Paul Simon and T.S. Elliot. Around the time of my birth, she was diagnosed with Primary Progressive MS, which as most know, is the rarest type of MS to have. I don’t remember much of my mom before she was confined to a wheelchair.  For the last ten years of her life she was living in a center for handicapped and elderly people. My mom was only 54 years old when she died. She was on a feeding tube and she had to be rushed to the hospital every few weeks with infections. Her muscle deterioration was so extensive that it took great effort for her to speak.  Her MS had taken so much out of our relationship that for years of my life it was hard for me to want to be around her. There was anger and frustration on both of our parts that I will regret for the rest of my life. I did however, move forward and I believe she found peace and we discovered a love for each other that was unbreakable. She made me laugh. Her smile could melt my fears away and her strength is something I try to encompass every day that I am here without her.  Those days have been challenging, but have been made fuller by the people I’ve met who emit that same fortitude and conviction. Many of those people I met through  MSAA.

I missed days and moments of my mom’s life because of so many misunderstandings.  I think that’s why the MSAA is here; to give people a chance to understand and to know that they’re not alone. I felt very alone for a long time after my mom passed away. I spent days and nights wishing I could go back and I was angry; angrier than I had ever been in my life. It took a while but I convinced myself that there was a better way and a chance for me to be able to change the lives of other people affected by MS.

I started my charity project, Move On, MS: Keeping You Moving Against Multiple Sclerosis at first because I was looking for a way to heal. As time went on it became much bigger than myself. It’s about creating a community and a bond where maybe there isn’t one and using my love and life’s work in music to create that. In my next post, I will tell you about our next event and everything you can do to support this project.

 

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Rock Out MS and Sharkfest San Diego

After carefully mapping out the direction of Active with MS, I finally decided the first event I wanted to do to inspire MS patients to be active would be an open water swim and that swim would go to benefit MSAA. After going to a MSAA event in San Diego, I learned MSAA was recruiting volunteers for a swim fundraiser. I grew up a swimmer, I love open water races, it was too perfect to not participate. After looking at the list of local races for the year in San Diego I decided on participating in Sharkfest on October 14th, a race that goes from the San Diego Convention Center to the Coronado Side of the Coronado Bridge, a distance of a little over a mile. While this should be a fun event for people to go to I really wanted to create an additional event that would allow me to meet more new people and have fun with my family and friends. To accomplish this I am putting together a benefit concert on October 12th to serve as the main fundraiser for my swim.

The concert will be at Robbie’s Roadhouse Bar and Grille located at 530 N. Coast Hwy 101 Leucadia, California 92024. The talented Jesse Cox Syn-Drum will be providing live music from 6:30-10:30 and there will be a silent auction. In addition the restaurant will be donating a portion of the money spent on food and drinks to the cause as well. If you are in the area come by and say hi and join in on the fun. I’m really looking forward to this event, I’m expecting a lot of people and I really want this fundraiser to be successful for MSAA. If you can’t make it please still consider donating to my race at

http://support.mymsaa.org/site/TR/Swim1Mile/General?px=1548101&pg=personal&fr_id=1100

MS will never get the better of me, I am determined to stay strong and beat it. I hope you feel the same way. I have MS right now but I still believe there is a chance that one day I won’t. In the meantime I will continue to stay active and create events like these for MSAA and hopefully find more people to join me.

No matter how you help the MS community, thank you. Stay active, Stay positive, Go forth and beat MS.

 http://activewithms.com/

 

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I am Active with MS

My name is Rob and I entered the world of multiple sclerosis (MS) one year ago. At the time I barely knew what MS was. I was released from the hospital in early October 2011 with a diagnosis of probable MS, which was quickly confirmed. This was terrifying news for a 26 year-old recently engaged guy, whose only other hospital stay was for having tonsils removed. During the first  few weeks, I read all I could about MS and talked to any expert that would listen. During this time the range of emotions, I felt went from being encouraged  and positive to lowest I ever felt.

In November [2011] a co-worker helped to change my life when she signed me up for a half marathon in January [2012]. I had never run a marathon before and frankly the thought of doing one never crossed my mind before that moment. With the help of her constant encouragement and the positive support of my friends and family, I trained  and completed my first half marathon, post diagnosis. I didn’t break any land speed records, but on that day I won. I successfully went from not being able to walk across a room unassisted to running 13.1 miles in the span of 2 months which made me wonder what else I could do.

During training, I began to realize that exercise no matter how light was helping me with my MS, specifically spasticity and MS fatigue. When my arms would shake or when my legs began to feel like they were rooted into the ground I stopped and rested. When I was feeling good I pushed myself. The more I trained the less symptoms I had. Even knowing this I did nothing for a month after the race and I had my next exacerbation. This one I say, my left leg and arm recovered about 95%. I walk a little funny sometimes now and the grip of my left hand is noticeably weaker. I felt fortunate that my exacerbation didn’t do more damage. I took this as a sign that I needed to be better. I had kicked around the idea of making a group promoting an active lifestyle for MS patients after the marathon and this pretty much sealed the deal.

Please note: Before beginning an exercise program patients should always consult with a healthcare provider, preferably one who has knowledge of multiple sclerosis.

With help from family and friends, particularly my beautiful wife who has been my rock and dedicated partner through all this, Active With MS is now a reality. It’s my goal now to promote an active lifestyle for all MS patients and to help the MS community as much as I can. I want to inspire and motivate MS patients to stay active and never give up. I love MSAA because I find them to be amazing advocates for us. MSAA provides many services, but I like to highlight two in particular. First, MSAA’s cooling equipment program. This program provides equipment which can be critical to a MS patient trying to lead an active lifestyle. The second one is the MRI Institute which helps to pay for expensive MRIs.

I look forward to building this group up in the years to come and raising money for MSAA through active events like runs and swims – maybe we can even throw in a bowling night.

Thank you MSAA for letting me guest blog. As I say at the end of all my posts on activewithms.com: Stay active, stay positive, go forth and beat MS.

 

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