Community Thoughts on Missing the Way Things Were

For people living with multiple sclerosis, it’s easy to dream of the life we had prior to being afflicted with this condition. So much of our everyday lives is shaped by MS, we often find ourselves missing the way things were. One of the amazing contributors at MultipleSclerosis.net, Marc Stecker (also known as the Wheelchair Kamikaze), wrote a poignant piece on missing his former self, called “I Miss Me”. We shared his article on our Facebook page and received a tremendous amount of feedback from our community about what it’s like to miss the “old you”. Here is what some of our community members had to say:

I’ve said the same thing to others!

  • Funny, I said that to my neurologist shortly after I was diagnosed last year.
  • I just said something similar to my sweetie the other day…that I would like to have my life back. I feel as though it’s been taken from me.

I thought I was the only one!

  • And I just thought it was me.
  • I really miss me!!!!!! I didn’t know there were others who felt this!
  • I despise that I “miss me” BUT am relieved that I’m not the only one “Missing”.
  • I always have moments of missing the old me. Glad it’s not only me thinking this way.
  • I say this so much, but when I try to put things on my page or try and explain how hurts, even my family ignores it. I was glad to see this and know I’m not alone. I say to myself every day I miss me.

I Miss Me too!

  • I miss me a lot!!
  • What a well-written blog which perfectly describes the life so many of us live. Or should I say have lived. I am amongst the very elderly whose future time on this earth will be very short. You too, will adjust constantly to your new normal.
  • I mourn and miss the old me. I can’t believe who I’ve become; however it’s a new challenge and who knows what I can be and what new experiences lie ahead that I would never have had. Stay positive guys.
  • I shared with a friend recently, “I miss me, who I used to be.” Her reply… “No, now that person is still down in there somewhere.” I’m exasperated. People really don’t know!!!
  • I just want the old me back!
  • Wow! This is the first time a tag line has smacked me in the face! Even though I’ve been very lucky, as I pondered this “I Miss Me,” I suddenly felt very sad. I do miss me. Even though I haven’t been “obviously” affected by MS, there are so many hidden things, the fatigue, weakness, ability to think quickly, balance, and stamina, that yes, I am not the “me” I once was. I do miss ME. Thank you for a great article.
  • What I miss about the old me is being able to do ANYTHING I wanted to do, when I wanted to do it!! Now, I have to accept the help of others, where I was the one always volunteering my abilities to those in need.
  • ‪I do miss most of the old me!!!! But I have welcomed most of the new me, with very few regrets.
  • I was missing for 15 years. I felt myself slowly slipping away, more and more the last 5 years though. It’s awful.
  • I understand just how you feel. I miss dancing a lot! Stay strong
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  • I miss myself so much! I just want to be able to be normal again and go to a ball game and climb up the bleachers and just walk around the yard without tripping in a hole and fix a meal or brownies without getting exhausted!
  • I miss me! I miss being able to bounce out of bed, being able to run, to dance to skip/hop/jump whatever! . I miss the reality of being able to chase my dreams. I miss me.
  • I have to believe that everyone misses the earlier version of himself or herself as they age, too.
  • Thank you for sharing. I say this a lot. I miss what I used to be able to do and can’t. I don’t even know who “me” is anymore. My identity was through my work and my child and all the things I could do for others and now I often wonder, “who am I?”
  • I am beginning to hate the new me!!!
  • I get so depressed if I start to think about original me.
  • I miss me like crazy!!!!! I say that to myself EVERYDAY
.
  • I want to run, even though I was not a runner!
  • I read his blog, it’s so insightful. My every move is fraught with thought. I miss the “me” that was.
  • Great article! It’s depressing to think about what MS stole from me but I know there are others who have it worse than I do and I try to stay positive. Keep writing it helps to know I am not alone.
  • I want me back, but I don’t see that happening.
  • Just learning to accept there is a new me but so hard to let go of the old me.
  • Things that seemed so simple are now a struggle. Thanks MS–NOT!
  • I miss being me. Feeling like I can do anything. I miss having a job, and making money.
  • Wow, this is so powerful! I miss me and have been missing me for 16 years now! I don’t know how many times I say I want my OLD life back!

What about you? Do you miss a previous version of yourself? Please share with us in the comments!

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Nurturing Your Roots

By: Shannon Loftus

I have MS. While I am many things, a wife, a stay-at-home, work-at-home, home-schooling mom, it is that last word that reigns supreme over me. I am a mom. I am a mom who has MS. So, this month, I want to share with you how I made it over the hurdle of educating my son about my illness, and my personal thoughts on educating our children, particularly our little ones, when it comes to our MS.

I was diagnosed, finally, when my little guy was 3. I am of the opinion that my health issues are mine, and mine alone. I believe that there is no reason to burden my little guy with my dealings with MS (or the epilepsy, or the spinal stenosis). So, I had made the choice to not tell him until he was old enough to understand what it all meant. I never hid it, but I never went out of my way to chat with him about it. He is my son, not my “bestie.” He looks to me for leadership, and he does not want to be my sounding board. He wants the strength of a parent, not the venting-session of a buddy.

I had had this discussion with a member of our local support group, who always seemed to want to know when and if I had told my son. I always said no, not yet. He came to group with me, and still does, but pretty much spends his time in the venue’s play area. In 2012, at the age of 7, I attended a group meeting and was deep in discussion with another member. Out of the corner of my eye, I saw this person (the one interested in my telling of MS to my son), talking to my boy, and giving him a coloring book. I thought nothing of it. On the way home, he starts asking me; Mommy, are you going to die? What is MS? Why do you have it? Will I get it? I asked him why he was so upset (he was crying by this time). Then he shows me the coloring book. It is a coloring book/activity book/educational book, for children, put out by another organization, and while a fine product, well-written and engaging, I did not think it the right fit for my family, particularly given my son’s age, so I had foregone its use as an “educational tool” or “discussion starter.” I was mortified that another adult had taken it upon themselves to introduce my son to my illness, and in such an impersonal manner (yes, I addressed it with that person).

So, my cresting of the “discussion” hurdle, when it came to educating my son about my MS, was not some heroic event, but rather more of a giant face plant, courtesy of another person’s interference. My son, husband and I made it through what became a mud-run obstacle course of questions and answers, crying, full of hugs, and a little guy being scared his momma was gonna die. He is now just shy of 10, and he does not know all the details of MS. That will come with, according to his interest in learning about it, and ability to understand the science behind. Right now, he just knows mommy is ok; mommy is sick and some days her legs don’t work right, or her eyes hurt, or she is really tired and hurting, and she is definitely forgetful, and sometimes she needs her cane, or even her pirate eye patch. With that latter one, I can still get him to wear one, and it helps to take the edge off of his nerves and we laugh ourselves silly.

You see, I had read the children’s book before, and I knew it was inappropriate for my son, at that age, and what my husband and I were then forced to deal with went beyond MS education or simple family discussion. It became crisis management. Not the desired “teaching moment.” I find tools like that to be a one-size-fits-all approach, and let’s face it…how many times has the one-size ever fit you? It is always too big, too small, too short, too long, and never just right.

Children are like trees to me…they need strong roots to support them as they grow. So, teaching your child about your MS, really needs to be like watering that tree. It needs to be done with care. You don’t just turn a hose on a tree and walk away. You can drown it. Or your hose might be defective and your tree thirsts to death. Our children are the same. You can overwhelm them with too much information that they cannot adequately process in terms of their emotional maturity. You can underwhelm just as easily and then they may think you are keeping something from them (like the water for the thirsty tree).

I still sometimes stress out about my MS and discussing it with my boy. He still has questions. I stress out about not being the physically active mom that I dreamed of being. I look at other moms and dads playing hard with their kids in parks and I am not capable of that. I relayed to my husband once about how much it hurt that I couldn’t be a normal mom of a young boy. He looked at me, and he said, “But you are. You are his normal. You are what he knows, because you are all he has ever known as a mom.”

Those words were priceless. He was right. So, I now relay them to you. You are your children’s “normal.” Given that, you know what information your child needs, wants, and can handle about your MS. You may need to have a talk with them now, or you may not. The children’s book might be the perfect tool for you, or it might not.

Most importantly, don’t not talk to your children. Educate them, make them aware, but do it on your terms, and look to what your “normal” is. In this way, your leap over that hurdle will be magnificent and filled with a sigh of relief. It will not be an echo chamber of a collective gasp of horror. Trust me.

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March is MS Awareness Month, & I’m More Aware Than Ever


By: Jeri Burtchell

I don’t know about you, but life with MS makes “awareness” unavoidable for me. I start the day with a symptom check, happy when I can make it out of bed and put one foot in front of the other. As I progress through my day, I’m constantly reminded of MS at every turn. It might be the alert on my phone that reminds me to take my medication or a check-up for the clinical trial I’m in. It may even be my drop foot that trips me up and sends me into a catbox face plant. And every once in a while it’s a wistful sadness as I take stock of all this disease has robbed from me. I try not to dwell on things I can’t change, but still I am “aware”.

March is MS Awareness Month–when we draw others into our world, giving a glimpse into what our new reality has become, in order to build understanding and compassion. Very few of us who have MS need our own awareness raised.

Sometimes sharing with family and friends can be awkward. I catch myself feeling like I’m whining or complaining when really all I’m trying to do is explain what life with MS is like. Just trying to raise awareness. Sometimes I close up and choose not to share, simply because it means I’m forced to think about it myself when that’s the last thing I want on my mind.

But during March I feel an obligation to “do my part”. I want more heads nodding in understanding than noses wrinkling quizzically at the mention of “multiple sclerosis”. I want more people saying “guess what I heard about a new breakthrough for MS!” The only way that’s going to happen is by all of us sharing our stories, or drawing people in somehow.

We might not have an ice bucket challenge on our side, but there are things we can do besides just posting pictures of awareness ribbons. And there are ways to work in a little levity so people aren’t just awkwardly trying to move on after your conversation has left them feeling sorry for you, or worse, confused. I’ve been giving this some thought and here are some ideas I’ve come up with…

If you’ve lost sensation in your hands, you could ask your friends to put mittens on and try to make it through their morning routine (all except for shaving or pouring coffee, maybe). Tell them you can’t feel things or control your movement as well as you once could. For some people with MS it feels like wearing gloves or mittens.

jeri blogOr how about a “Sit-N-Spin for MS”? Do they still make that toy? Get grown adults to challenge each other to spin like crazy while someone takes a video. When they get up to walk they’ll be walking like we do with MS, stumbling around and bouncing off walls.

When others are forced to experience things that closely resemble symptoms of MS, sometimes they are profoundly moved. “I get it, now!” is something I hear a lot.

If your family and friends aren’t up for the MS experience, maybe recording your thoughts on living with MS in a video would help. Things that are hard to say face to face can be easier to share in a video sometimes. Healthline.com has launched a campaign called “You’ve Got This!” where those with MS are encouraged to submit a video of their experience, giving hope to the newly diagnosed.

Each time you share your experience, whether with your friends at home, through posts on social media, or even videos enlightening and encouraging others, you are building awareness and drawing the attention to the bigger picture.

To end this disease we’re going to need a lot more research, and that means a lot more funding. When people understand how MS can impact our quality of life, the awareness spreads. When you use your own story to engage others and spread the message, it can be a very empowering experience.

Not only will you be helping others to understand what we live with every day, but you will gain so much satisfaction from feeling like you’re doing your part as well. We might not be able to cure MS ourselves, but we don’t have to sit back and passively take what this disease dishes out in silence. Compassion starts with understanding. Understanding comes from communication.

Be the voice of MS, if only for one month, or week, or even a single day this year. You won’t regret it.

Resources:

http://www.healthline.com/health/multiple-sclerosis/youve-got-this

Photo credit: oddharmonic

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

 

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March is MS Awareness Month

By: Ashley Ringstaff

I know there are a lot of questions many people with MS ask themselves… and some of those questions are based upon being involved in the MS Community. How can we get involved? How can we make a difference?

I thought I would try and share my thought on this subject, for the month of March, which is recognized by many as Multiple Sclerosis Awareness Month. There are a lot of events that you may see online, on social media, and many other places. But how can we get involved?

I do a lot of advocacy for multiple sclerosis all year round, and I don’t usually attend huge MS events in order to do so. I do small, but meaningful things to raise awareness about multiple sclerosis.

The obvious one, is that I blog… but before I even started writing; I became a volunteer with MSWorld.org where I am a part of an Online Support Group for MS Patients & their Caregivers.

However, I feel that advocating really needs to go BEYOND just the MS Community, and advocated to the general public. When I have been out in public, someone will ask me what MS stands for, because I was wearing an MS t-shirt. So I explained to them what it was. Just passing along information to a few people can spread the word. Once you have given the person information, they will probably relay it to someone else they know.

I use my social media outlets to raise awareness about multiple sclerosis. I’ve done lobbying before; I do as much as I can. However, we can’t just depend on a few people to raise awareness for MS. We ALL need to take part in some sort of way.

Do you remember hearing/seeing about the ALS Ice Bucket Challenge? I saw a lot of people with MS wanting to do something like that, to bring awareness for MS. While it’s a good idea, it’s very hard to ‘copy cat’ an awareness project. But ALS is also a neurological illness with no cure, so the research being done for ALS, is most likely going to benefit the MS community in some way or another.

I’ve seen videos online of people at the mall putting up a booth, and having people who are shopping at the mall, “Try on MS”. There are so many things being done to raise awareness for MS around the World. I don’t feel like we all have to have a ‘theme’ to raise awareness, just spreading the word can do a lot.

However, I will be contacting my local news stations, letting them know that March is MS Awareness Month – and if they can do some sort of coverage on it. I’m going to make a shirt that says, “Ask me about multiple sclerosis” … original right? But it will get people wondering. Even if they don’t come up and ask me, more than likely, they will look it up on their phone.

Get involved with your local organizations group… whether that’s with MSAA, NMSS, or just something you and others you know with MS in your area get together once a month. Discuss with each other how you can make a difference in your community.

At MSWorld, we made a campaign to “Live Beyond MS: Breaking the Silence”. When I speak to people that have MS as well as their loved ones, they all want to know when a cure will be available for us. That’s a good question… but I’m not going to sit around and just wait for researchers to give me the answers we are looking for. Why? Because the bottom line is, the more people who know about multiple sclerosis, the more funding we will get for research, the closer we are to a cure, re-myelination, Stem Cell… the list goes on and on.

So, what is the conclusion to this article? Don’t wait for someone else to do something to bring awareness to MS… start doing it yourself, every bit you do makes a difference, whether you believe it or not.

xoxo
Ashley Ringstaff
MSWorld Volunteer
Diagnosed in 2010
Blogger for MultipleSclerosis.net
Follow me on Facebook
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MS Awareness Month: A Chance to Make a Difference!

By: Meagan Freeman

Every March, we have the opportunity to share our own stories and participate actively in spreading awareness about multiple sclerosis. The possibilities are endless, ranging from the MSAA “Swim for MS” fundraiser, MS biking events, MS walks, read-a-thons for our children in schools, and any other activity that might assist in spreading knowledge about our illness. This disease continues to be poorly understood by many, and it is still considered rare, with an incidence of 1 in 1000 in the US currently. The need for awareness has never been greater, and we can all have a hand in educating others. If we each take on the task of sharing information with those around us, knowledge can spread like wildfire.

Many patients find that they are unable to participate in these activities to support MS awareness. Many fundraisers are physical, such as running, walking, biking, and swimming events. Sometimes, the thought of participating in an event like these can be daunting for those with physical disabilities. Some patients might think, “How can I possibly participate in these?” There are a myriad of options for those who may not have the ability to actually take part in a physical event, however.

Fundraising while a family member or friend completes the physical part of the event is a wonderful option. I have had several friends participate in local MS “muckfest” and running events, while I took on the task of raising donations. I helped advertise and share information, while my runner friend completed the event. We managed to raise $2000 together last year alone. No amount of money raised is too little, and no one should feel like they cannot make an impact.

Another option is to spread awareness through blogging, speaking and writing. My personal contribution to MS awareness continues to be my blog. I started this blog with the goal of sharing my own personal experiences with MS in order to educate, and to ensure that no patient ever feels isolated or alone. The simple act of sharing your story may have a greater impact than you ever imagined. The thought of helping others simply by sharing your story is incredible! You never know who needs to hear your experience at that very moment.

Whether you choose to donate to an MS organization such as MSAA, to participate in an MS event, or simply share knowledge and educate through writing or speaking, you can make a difference. If every MS patient takes on the challenge of increasing awareness about our illness, we are capable of making sweeping changes. Let’s work together during the month of March (and beyond,) to increase knowledge, share our stories, and have a personal impact on finding the eventual cure for multiple sclerosis.

*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.

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Runaway MS Train

By: Matt Cavallo

I remember as if it were yesterday: January, 2007. I was sitting in my neurologist’s office after suffering my third relapse in eighteen months. At that moment, I felt that my MS was a runaway locomotive barreling down the tracks and I needed to somehow find the emergency brake.

My neurologist at the time was new to my case because my previous neurologist took a new position as a stroke specialist at a Boston hospital. I was in to see my new neurologist because I needed to switch medicines due to an allergy I had developed to interferon.

Prior to this visit, I had researched a breakthrough new treatment that had only been on the market for six months. This treatment had been voluntarily removed from the market due to unforeseen deaths during clinical trials and had just received FDA approval for a re-launch in the summer of 2006. Despite the risk associated with this treatment, it showed potential to be the emergency brake that I needed to stop the runaway MS train.

I took control of the conversation in my neurologist’s office right away, “Doctor, I have been reading online about the available options now that I can’t take interferon treatments. After comparing the two other options, I want to try Tysabri.”

There was a long, uncomfortable pause. Then he leaned forward and pushed his glasses up his nose towards his brow and said, “Matt, while I appreciate your research there is not enough published data on this new treatment. There were complications during clinical trials. I am not comfortable prescribing this treatment at this time. Not when there is a safe treatment option with a proven track record still available to you.”

I felt like I just took a gut punch and got my wind knocked out. I sat slumped for a minute in disbelief. He leaned back in his chair and continued, “I am going to write you a prescription.”

“Doctor,” I interrupted, “with all due respect, it is my body. I am in charge of what I put into it. This new treatment is showing great promise and I want to try it.”

“Well Matthew, I am not going to write you a script for it. You still have a platform option that may work equally well. Let’s start you on that.”

“Doctor, I am not going to start that treatment until I get a second opinion.”

Now, his demeanor changed. I could tell he wasn’t used to that kind of patient response. He recoiled, “Very well Matthew, if that is your decision I respect your wishes.”

With that, I left his office and after some more research, I found an MS specialist in Boston. I called her office and she said that she wanted to evaluate my case. I just needed a referral from my primary doctor to go and see her. So, I went to visit my primary care doctor and asked her for a referral.

“No,” snapped my primary doctor. “Our doctors, in our system on the South Shore are every bit as good as the ones in Boston.”

No? Why was everyone making this so hard on me? I didn’t understand what I had to do to get the treatment I wanted and was frustrated that everyone in the healthcare system was seemingly against me.

I called up the Boston MS Specialist again and broke the news that I couldn’t get a referral.

“Matt,” said the MS Specialist, “I am going to reach out to your primary doctor directly and ask for a one-time second opinion referral. Then, you are going to come in and see me and we will find you a new primary doctor that will refer you to me.”

This was eight years ago this month in February of 2007. That month, I started that new treatment and applied the emergency brake to my runaway MS train. This eight year anniversary also marked my decision to be my own healthcare advocate. It took a lot of courage to say no to the doctors, but in the end I felt like I took control of my own health. Today, I have great open relationships with my healthcare providers and we make decisions together as a team.

**Disclaimer**
The previous blog is the author’s real life experience and his personal treatment decision. This is not an advertisement for any particular treatment. What works for one person may not necessarily work for another person. Please consult with your doctor to decide as a team what treatment option works best for you.

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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Myoclonus – heightened sensitivity and MS

There are many unpleasant symptoms that are well understood to be associated with multiple sclerosis, like fatigue, cognitive impairment, and spasticity. But there are also symptoms that occur in people with MS that aren’t commonly discussed, and may actually be overlooked by patients and physicians. One of our contributors, Matt, wrote an article about how his “startle reflex” is extremely sensitive, and it actually has a detrimental effect on his quality of life. This symptom, also known as myoclonus, impacts many people with MS, but it appears that many people don’t realize it was actually related to their MS. After reading Matt’s article, “Myoclonus – Why do I startle so easily?”, many of our community members shared their thoughts and experiences with us. Here’s what several of them had to say!

I experience this too!

  • I have this too!!!! Loud noises such as a loud TV or radio. People talking loudly or children screaming. My senses are all affected, including my hearing, eyesight, and smell.
  • So THAT’s what that is!
  • I have this problem too and I get really agitated by it. I’ve always been jumpy, but more so in the past 5 years.
  • I have this too. It’s gotten to where I can’t even be where there are large groups of people, and even the sound of my own voice will rattle me. And I have gotten to where I don’t like to talk or socialize at all because of how much noise bothers me.
  • I am also very sensitive to noise and I have strange sea like sound in my left ear.
  • Thank you Matt for an excellent accounting of your journey with Myoclonus. I too, have had a major relapse and experience a higher sensitivity to certain things, one being sound. My neurologist and I have been working on subduing the worst and working our way down.
  • Klonopin does not work for me. I take Nucynta at night and it helps, but the side effects are very unpleasant. It’s a very strong narcotic for pain. It takes away the “jerky” movement but it makes me incredibly anxious. I have not found anything else to remotely make the myoclonus better. I have high hopes for the future of medicine because I cannot fathom anyone living like this for the rest of their lives.

I didn’t know there was a specific diagnosis for this symptom!

  • I decided to share this as some of my friends might find it interesting. It is part of a long list of very odd symptoms I have acquired, and it was helpful to me when I found that this “weird sensory sensitivity” had a name, myoclonus. Psychologically, for some reason, the fact that there is a name for this condition is validating, and helps, somehow, to know that there are others dealing with this odd affliction that is not easily understood.
  • I’ve always thought my exaggerated startle reflex was related to MS, but this is the first time I’ve seen it in print.
  • I didn’t know what it was going on. It’s even worse in evening with the TV, my husband talking over the TV, the dog barking at the cat, etc. It’s sensory overload!! Now you’ve validated that it’s an MS symptom.
  • Good post Matt, I have same symptoms, but flashes of bright light, sound and other stimuli, including stress, are involved. I had not tried to find out what it was called, but I knew it was brain and spinal lesions behind it – I am glad to hear it has a name.
  • Oh my goodness, this was one of the new symptoms I developed about a year ago! My phone going off would startle me, the door slamming throws me into a panic attack, loud noises especially in the evenings seem so much louder and ear piercing.
  • I have this really bad and the doctor, not my neurologist, always told me it was my Graves’ disease.
  • I am so grateful to read this article. I developed this startle problem in the past 10 years since I was diagnosed with MS. I remember at times I was so startled it was actually painful. I don’t seem to do it as much as I once did, but good to know I wasn’t crazy. Thanks for your article.
  • I can not thank you enough for writing about this because, like many I never connected this with being a symptom of MS and I never told my neurologist that this was a frequent experience of mine.

People don’t understand the impact this has on my life

  • I was never so resentful. I have to keep reminding people who know I have MS to calm down so I can calm down too.
  • If someone raises his voice I begin trembling. I’m young, but old enough to not be comfortable about that observation. It’s getting worse too
.
  • I knew startling was MS, but it’s nice to know that others are affected by people walking behind them. I had someone come around my desk to look at my computer and I got so nervous I had to ask him to move away from me. I felt like a great big “meanie”, but you have to do what you have to do.
  • This particular symptom has affected me tremendously in the social aspect. For many years I could not have been more frightened to be around anybody doing anything because they feared that I would have uncontrollable muscle spasm. The reactions I got were not totally bizarre, however I noticed that it was not just me who was disturbed by my symptoms, yet most people tend to feel very uncomfortable around me because most people think that they are causing me to be scared.

I have something similar

  • For anyone who is experiencing sensitivity to sound, there is another condition called “Hyperacusis” that involves sensitivity to sound without apparent evidence as to the cause. The primary difference between the two, from what I’ve learned, is that it does not (necessarily) involve the muscular activity, but more often results in pain, fatigue, and a multitude of other varied cognitive symptoms. There are a few subcategories of hyperacusis; we just recently discovered “Acoustic Shock Disorder” as the most likely diagnosis.

What about you? Do you find that you startle easily? Did you know that this could be a symptom associated with Multiple Sclerosis? Share with us in the comments!

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Love Conquers All… (Including MS!)

By: Meagan Freeman

Valentine’s Day brings to mind images of unconditional love, commitment, and romance. We see the theme as we stroll through any store during the month of February, the candy hearts, the red roses, and the chocolate. Sometimes, we forget what this concept truly means, and get caught up in the “commercial” aspects of the holiday, instead. If anyone is looking for a true story of love, hope, inspiration, and unending devotion, I have one for you.

My grandparents met on a Southern California Beach in 1944. My grandmother wore a bright yellow bathing suit, as she sat in the sand under an umbrella. My grandfather always described her as “the most beautiful girl I have ever seen.” Both of my grandparents served in the military during World War II, and both were stationed in Santa Monica, CA. It was love at first sight, according to both of them. This bond grew in the following year, and they were married in a beautiful ceremony in 1945. This strong bond they had formed would be tested in the coming decades, and it would carry them through the most difficult times.

In the following decade or so, my grandparents had seven children, three girls and four boys. My mother was the oldest child. Sadly, my grandmother began to develop neurological symptoms such as weakness and emotional instability. Eventually, she experienced seizures on a regular basis. This led to a fairly rapid decline, leaving her wheelchair bound by age 40, and bedridden by age 45. Eventually, she was diagnosed with a rapidly progressive form of multiple sclerosis. The advice regarding MS in the 1950s-1960s was generally to “get in bed and stay there,” and “do not ever exercise.” As we know, this is some of the worst advice for MS patients.

When my grandfather was faced with the decision whether to move his beautiful wife to a nursing home or keep her in the family home, he insisted she remain with him. He lovingly cared for her for over a decade in the home, all while raising the seven children and working to support the family. He helped her to dress in her best clothes during family gatherings, brushed her hair, and made sure she was a part of the family in every way. My grandfather was a photographer, and he took hundreds of incredible family photos, always including my grandmother.

Eventually, my grandmother lost her battle with MS. My grandfather carried on for many more years, visiting the grandchildren (myself included,) gardening, attending church, and waiting for the day he would see his wife again. His faith was strong that he would see her again someday, and he spoke of her often. He passed away in 1994, and on their grave is the quote that sums up the undying dedication they showed for one another through the most difficult times life could throw at them: “Suffering disappears, love remains.”
Love is indeed forever.

meagan feb blogMy grandparents on their wedding day, 1945

 *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.

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Hard Family Conversations and MS

By: Matt Cavallo

During my initial hospital stay and subsequent diagnosis of MS, one of the biggest challenges that I faced was talking to my family. We had a history of multiple sclerosis in my family. My dad’s sister, Loretta, was diagnosed with MS in the 70’s and she passed away in 1981 due to complications of the disease. During that time, there was little in the way of treatment available to help her. Not only that, but the disease progressed very quickly. She passed when I was only four, but I still can remember her. She was in a wheelchair and she couldn’t talk, she could only mumble and moan.

While I was laying in my hospital bed contemplating my diagnosis, I was thinking that I shared the same fate as my Aunt Loretta. The whispers around my bed from my family members supported my fears. As a result of these fears, the conversations changed. Family members started treating me differently. They were walking on eggshells around me, careful not to divulge any of their true fears of my future. Even with treatment, as my functionality returned, everyone held their breath for MS to strike again.

Six months later I had another drastic exacerbation. Then, twelve months after that another one. It seemed like I was following Aunt Loretta down a perilous track. And my family treated me that way. It was to the point where I didn’t want to have conversations with them because I wanted them to remember the person I was and not the person I had become with MS.

However, there were a couple of things I had going for me that my aunt didn’t have. One was timing. In 2005 there was a lot more knowledge about the disease and many more treatment options available than when she had it in the 70s. The second thing was history. I knew my Aunt Loretta’s story and I didn’t want mine to end the same way. Family members told me that she didn’t like the advice she received from a doctor, so she never went back to that doctor. I used that information to motivate myself to learn as much as I could no matter if the news was good or bad, scary or hopeful. I just wanted to get the most objective, up-to-date information available to fight. Lastly, I had hope. In the seventies there was little known about the disease. Today, there is research and scientific breakthroughs, social support networks, and hope.

If I could go back in time with all I know today about living with multiple sclerosis, the fear and egg-shell conversations with my family would be dramatically different. I would use the resources around me, like My MS Journey, to educate myself and ease my family’s fears instead of staying silent.

Today my family conversations are no longer about the horrors of MS. My family and I now talk about my future and my kids and all of the awesome stuff that normal people talk to their family about. Today we are a normal family and I just happen to carry the torch of multiple sclerosis. I have had it for approaching ten years now and I am still working, playing, being a dad and living the life I always wanted to live. That makes me proud to talk about my MS journey and how I have lived a great life despite my diagnosis.

Resource:
http://mymsaa.org/journey/

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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My Life with MS

by Shannon Loftus

I am a stay at home, work at home, home-schooling mom to the world’s most awesome child – my son Nathaniel. Yes, I have multiple sclerosis, and it does rule my life. But, every day that I wake up and can see my son and husband, can move my limbs, even if in pain, is another day I am thankful for.

I was officially diagnosed with multiple sclerosis in the fall of 2009, although the symptoms had been ongoing since I was a freshman in high school. With this diagnosis, I also found out I had a brain tumor that, of course, during all the diagnostic testing was the only other option for the symptoms I was experiencing. Fortunately, the tumor is on the pituitary gland, benign, and not growing. I recall that on the day I was diagnosed I had a laugh-attack right there in my neurologist’s office. Multiple sclerosis is not funny by any stretch, but I found the double diagnosis to be downright morbidly hysterical at that moment. What luck! Shortly thereafter came the diagnosis of epilepsy, followed by spinal stenosis. Despite all of these diagnoses, I struggle through it all with my head held high (sometimes), staying at home, working at home, and home-schooling my most precious gift that keeps me going – my son. I am also a co-leader of a multiple sclerosis support group here in my hometown. It is a pretty fun bunch of folks, MS aside!

MS has thrown a lot at me. I have been blind in one eye and half blind in the other, at the same time. I have been nearly unable to walk, hobbled and I use a cane more often than not. I have been hospitalized, and I can no longer function as the field archaeologist that I once was. I am losing the use of my left arm, and have left side weakness. The stenosis of my spine has made walking for more than a hundred yards nearly impossible. Standing, sitting, laying down are all painful.

I have adapted, not by choice, but out of necessity. MS sets the pace, so I shifted to private consulting from home, and while not my dream job, I am rewarded with a gift that I know I will be forever grateful for – as much time spent with my son as possible, the opportunity to watch him grow while my eyes still work, and the special time we get to spend snuggling up while he still thinks mom is cool, hanging out at the movies, and hitting the pool in the summer.

I have also experienced depression. I once laughed at the notion of MS and depression going hand in hand. I was so wrong and I was very humbled by my year and a half long journey through a tunnel of personal darkness. I now have immense compassion for those suffering depression, no matter the cause.

I am honored to be able to share with others my journey of life with MS. It is not always fun, but it is what it is. I try to find the humor in life, and frankly the trifecta of illnesses I live with provides a bottomless well of material in that regard. I would love to share the ups and downs, ins and outs, and the overall experience of what it is like to have MS. The disease affects each of us very differently, and I believe it is only through sharing our experiences that each of us finds comfort, solace, and the ability to keep fighting.

Be Thankful for the Day!

-Shann-

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