MS in America – The Use of Oral Therapies for the Treatment of MS

In our September article we shared some of the key findings from The MS in America Study (MSIA), highlighting some of the ways that multiple sclerosis (MS) impacts the everyday lives of those with this condition. In addition to collecting information about the impact of MS, we also asked people with MS to tell us about their treatment, including what they’ve tried, if they were satisfied, and what they are currently taking for their MS. Because oral therapies are relatively new to the treatment armamentarium, we decided to take a closer look at the use of oral therapies for MS in our community.

As one would expect, infusions, interferons, and other injectables are still used by a majority of MS patients. However, results from MSIA, which was completed by more than 5,000 eligible respondents, demonstrated that oral medications for MS are used by nearly one third of patients who have relapsing-remitting MS (RRMS), and more than 50% of people using injectables are considering switching to an oral medication!

We asked all survey participants how long they have been on their current therapy, and as one would expect, those who were taking oral medication for RRMS reported being on that treatment for a shorter period of time than those who were on other treatments (like injectables or infusion).

Lenght-on-time-MS-patients-have-been-on-therapy05

Interestingly, the vast majority (80%) of people who had ever taken an oral therapy for MS reported that they were still taking an oral MS treatment.

We also asked participants several questions about switching therapies. Most of those who reported switching from injectables noted that they did so due to needle fatigue and/or issues of tolerability. Other reasons included seeking better efficacy, convenience, safety, and cost, among others.

Reasons-why-MS-people-switch-to-oral-medication08

Many MSIA participants who had not recently taken an MS treatment reported that they had started anew with an oral medication due to a variety of reasons, including dislike of needles, and disease progression, among others.

Finally, of the MSIA respondents who were still taking injectables to treat their RRMS, nearly half (48%) said they have considered switching to an oral therapy. While much remains unknown about the long-term use of oral therapies for MS, it is clear that oral medications for MS play a critical role in how this condition is treated. For more results from the MSIA special report on oral treatments for MS, click here.

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Continued Success after Therapy

By: Matt Cavallo 

Earlier this month, I wrote a personal story of my positive outcomes with therapy. I utilized Physical and Occupational Therapy, along with Speech Language Pathology to aid in my recovery from neck surgery. This was a scary time in my life, and I was extremely thankful to have each line of therapy to help me overcome my deficits. My personal challenge became what to do once I no longer qualified for therapy visits?

The best way to relate my therapy experience is to talk about my gym membership. I have a family gym membership and make my annual gym appearance sometime in January. Then, I don’t go for the rest of the year. I offer any number of excuses to my wife and kids as I watch them drive off to the gym each Saturday.

The truth is that the only way I would utilize that gym membership would be if I had a personal trainer – someone to look over my shoulder as I exercised that I paid for. Paying for the service holds me accountable and forces me to keep my appointments. I also prefer to work out with a trained professional, who understands my limitations and can design a routine where I won’t hurt myself. The problem becomes I get on a good routine with the trainer, but as soon as I stop using a personal trainer, I stop working out.

This is my same relationship with therapy. While I am actively participating in therapy, I do great. As soon as they give me home exercises, I don’t follow through. I know that the homework given by a therapist is specifically designed to help me functionally, but I just don’t do well when left to my own devices. The problem is that my lack of follow through is detrimental to my health. My neck surgery forced me to change my behavior. Here are a couple of tips that helped me have continued success after being discharged from therapy:

Tips for Continued Success after Therapy:

1. Request clear, written discharge instructions. Your therapist will develop a plan of care that you can continue on your own after you finish all your therapy appointments. Make sure that you get a copy of those discharge instructions at your last appointment.

2. Get a copy of your Home Exercise Program (HEP). Your therapist can provide you home exercise instructions with pictures. These instructions provide a handy reminder of the therapist recommended exercises, as well as a visual reference for how to safely perform the exercise.

3. Make sure you get your questions answered. During your last appointment, make sure that you have a list of questions for your therapist. You will want to make sure that any concerns you have are addressed. There is truly no such thing as a stupid question when it comes to your health and well-being. Even if you think your question isn’t appropriate, you may have a legitimate concern that the therapist isn’t thinking of. I always have my questions written on a piece of paper and take detailed notes.

4. Follow through. Where I am lacking is in the follow through. For my neck, I still have my HEP and discharge instructions. When it tightens up, I know exactly the stretches that help and reference the pictures to make sure I am doing it right. The problem is that if I consistently followed through and strengthened and stretched my neck, then I probably would feel consistently better – just ask my wife!

Therapy is a great start for managing your MS symptoms. Continuing to follow through after you finish therapy is the key to success. Following these steps may help to ensure that you are prepared for life after therapy. Continuing your home exercise program post-discharge will put you in a better position for continued success.

*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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A Personal Story of Positive Therapy Outcomes

By: Matt Cavallo

I had one goal for after my anterior cervical fusion surgery: work as hard as I could to return to normal so I could be the dad I always wanted to be. This was not going to be easy. I had a serious neck injury with bone fragments cutting and flattening my spine with every movement. The pain I experienced was intense. Electric shocks shot up and down my body, freezing me in place whenever I tried to move. Instinctively, I held my shoulders tight together when I moved in order to take the pressure off of my spine, but it also made me look like the Hunchback of Notre Dame.

This was no way to live. My sons were only three and one year old, respectively at the time, and I feared that I wouldn’t be able to be the active, involved dad that I always wanted to be. In my deepest, darkest moments, I was afraid that I would become quadriplegic. Unfortunately, my doctors agreed with my fears and recommended immediate surgery. They said my neck problem was related to an earlier MS exacerbation I experienced of Transverse Myelitis and that even picking up my babies the wrong way could leave me damaged for life.

I was scared. I didn’t want surgery, but I also didn’t want the alternative. In September of 2010, I went under the knife. I didn’t know what to expect, but I was also working for a rehabilitation hospital at the time and received a lot of good advice prior to surgery. When I woke up from that surgery, I followed that advice.

First, I had an evaluation with a Speech Language Pathologist (SLP). While many people know that SLPs can work on cognitive and language deficits associated with multiple sclerosis, many don’t know that SLPs can also help with swallowing issues. My SLP coached me how to adapt my swallowing techniques while wearing a hard neck brace. These strategies helped me adapt during my recovery. My SLP also set expectations about what it would feel like to swallow with the titanium artifact in my neck. Without these compensatory strategies learned from my SLP, my recovery would have been much more uncomfortable and I probably wouldn’t have received the proper nutrition. As a side note, I did consult a Registered Dietician about liquid nutrition options before switching to regular food when I was first out of surgery.

Next, I had an Occupational Therapy (OT) evaluation. Learning to adapt with a hard collar wrapped tightly around your neck is difficult. Trying to dress or clean yourself up after going to the bathroom was impossible for me. My OT worked on activities of daily living (ADLs) including dressing and toileting. These strategies allowed me to remain independent with my ADLs post-surgery. Feeling independent with grooming, toileting and dressing helped my confidence. My wife was already having to dress and change my kids’ diapers. I didn’t want her to have to do the same to me. My wife did really step up and help me when I needed her the most, but my OT gave me the strategies to be as independent as possible during my recovery.

Finally, I had a Physical Therapy (PT) evaluation. First, my PT worked on my neck range of motion, turning from side to side, and rotating my shoulders back into place after all the atrophy associated with being hunchbacked. Then, my PT worked on strengthening my shoulders and neck to ensure that my range of motion and shoulders remained intact after therapy. My PT also gave me home exercises designed to keep the area strong and maintain the progress I made from the therapeutic interventions.

It has now been four years since surgery, and I am happy to report that I have achieved my goal. My quality of life is better now than it was prior to the surgery. I believe that I would not have experienced as much success without the help of my therapists. My PT, OT, and SLP each contributed, not only to my recovery, but also, to the strategies that I learned through therapy which I continue to use today. Most importantly, I am able to be the dad that I always wanted to be. I appreciate every day that I can go out and play with my boys.

*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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MS Means Managing Your Energy

SherylBy: Sheryl Skutelsky

It’s Football Season! So, what does that have to do with MS? Well, in my case an unexpected wonderful opportunity to travel to meet my son to see my very first live NFL game. This opportunity truly once again brought to light the ways in which I have to live my life a bit differently from everyone else.

My dad wanted a boy, but instead he got me, an only child. So, I was placed in front of the television from as early as I can remember to watch the Jets play. I was taught every rule and regulation.

I’ve lived my entire life in New York, but for some reason my son had been a Packers fan from as early as I can remember. He dreamed of getting tickets to Lambeau Stadium for over 20 years. He finally had tickets for the Packer’s first home game against the Jets, but he broke up with the girl that was supposed to accompany him.

I get a call from my 31 year old son, now living in Houston, asking me if I would like to meet him in Green Bay for my birthday to finally get to see my Jets play live. Instantly I was ecstatic and panicked at the same time!

MS means managing your energy to avoid overwhelming fatigue. I didn’t have enough warning to rest all week for this trip. I also remember my son telling me that as a teenager he often felt that I wasn’t there for him; I was always too tired. I hadn’t been diagnosed yet, and my son rationally understands now why I was always tired, but I didn’t want to let him down this special weekend.

Well, the Packers beat the Jets, and I came home a Packers fan, but more importantly, my son and I had such a special weekend together. He had tattooed the MS logo on his ankle for me several years ago which meant a lot, but this weekend he also showed me that he truly understood how I had to live a little differently with MS.

My son did all the driving, took care of me, kept me out of the sun as much as possible, and made sure I got time to rest. We had such a great time together in Wisconsin, and my son told me how proud he is to tell people how his mom doesn’t let MS stop her from enjoying life. After all, what more can a mother ask for?

*Sheryl Skutelsky, diagnosed in 2001, has learned how to live positively with multiple sclerosis. Sheryl’s passion has always been graphic design. Her symptoms have become an inconvenience to her work, so she now uses her skills and creativity to reach out to others about MS. Sheryl is a patient advocate speaker for Biogen Idec. She also writes for Healthline.com, and she is an Internet radio host with her own show, Fix MS Now. Check out her Fix MS Now page on Facebook which has more than 10,000 followers. You can help raise MS awareness one “like” at a time by visiting: http://www.facebook.com/fixmsnow.

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Inside My Bubble, Prepared for Anything

By: Jeri Burtchell

I like to think of myself as a planner. Now, before those of you who know me collapse into uncontrollable laughter, let me explain. I don’t plan as in “wedding planner” or even use a “day planner.” In truth, I’m a perfect candidate for one of those intervention reality shows.

I never said I plan in a structured, well thought-out manner. No, I’m motivated by more of a panic-driven, deeply troubled, “what-if” thought process I learned from my mother. I have cultivated an emergency response for every possible scenario that could come along in life. I have prepared for catastrophic events that may or may not ever happen.

Mom and I have our fire season evacuation box, our hurricane season supply stash, and when I travel I have a whole suitcase packing ritual designed to make life easier in the event that things go wrong. When connections are missed or there are bathroom emergencies, I know I can count on the contents of my purse or roller bag to rescue me.

I like to think of this as part of my MS Bubble. Since I was diagnosed in 1999 and have come to realize how unpredictable it can be, one small thing that gives me solace is having my MS Bubble.

Jeri blogIt’s a sort of invisible force field I’ve visualized that surrounds me. Inside I have everything I might need to deal with unpredictable events. Things that define my comfort or bring me joy are always close at hand.

Others might say my bubble is nothing more than my “comfort zone,” and in the classic sense, I guess it is. When I’m working, it’s right here at my desk. In my bubble/comfort zone, I keep the necessities of life. I have everything from a box of tissues to device charging cables.

While others look at my workstation and see a chaotic mess, I see a symphony of bubble-friendly instruments, each playing a part in bringing me comfort. I choose to forgo the aesthetic appeal of minimalism. I’d rather have clutter, as long as it’s purposeful clutter. Who can say I won’t need that thermometer mere inches from my keyboard?

My sweater stays on the back of my chair, always at hand in case I get chilled. Slippers are close by.

My smartphone is the most indispensable tool in my bubble. It connects me socially, delivers my mail, reminds me to take medications, tells me what the weather is like outside, and will distract me with games if I let it.

The point is, I have made my life as comfortable as I can, given the unpredictability of MS (and of life itself!). Although my bubble does not appear to be in any semblance of order to the untrained eye, it works for me.

I haven’t “planned” my bubble this way as in planning-a la-Martha-Stewart. It is only an ever-evolving collection of habits and things that aid me in everyday life. So I am soothed by the knowledge that, even when my MS symptoms are acting up, my MS bubble is always there, ready to comfort me.

Perhaps it’s eccentric of me to imagine this “bubble,” but visualization is a coping mechanism that works for me. I once got through the claustrophobia of an unmedicated MRI by imagining I was at the beach. My “vacation” was so enjoyable I was almost sad when the MRI ended. The protective “bubble” just works for me.

If you can develop coping strategies – whether or not they involve visualizing your own bubble – whatever works to keep you calm, centered, comfortable, and in a joyful state of mind is all that matters. So think about your situation and what things bother you the most. Then go about “planning” to deal with them ahead of time.

Create your own comfort zone, your own MS Bubble.

And if you’re a friend or family member of someone coping with MS, you might want to consider memorizing these 12 things you should never say to someone with a chronic condition.

But please add one more: Never say, “I took the liberty of cleaning up your desk. Hope you don’t mind – it was a real MESS!”

Why, that would just burst my bubble!

References:
Photo credit: Jeff Kubina, used with permission under the Creative Commons License
http://www.healthline.com/health-news/ms-12-things-not-to-say-022814#1

*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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The Impact of MS on Everyday life

Earlier this year, MultipleSclerosis.net conducted an on-line study called the MS in America Study (MSIA), which aimed to gather information from people who have been diagnosed with multiple sclerosis. The study was conducted with a goal of gaining a better understanding of the current status and trends in patients with MS. The survey covered a broad range of topics, including diagnosis, symptoms, treatment, and living with MS. A total of 6,202 people started the survey, of which 5,710 were eligible (diagnosed with MS, at least 18 years of age and were either US residents or US citizens living abroad); 5,004 completed the study.

One key area of interest in the MS community is the actual impact that this disease has on the everyday lives of patients and family members of those with MS. A section of the MSIA study asked participants a series of questions that focused on everyday life with MS, and the results are quite compelling. Of 5,514 respondents, the vast majority (77%, n=4,244) said that they are no longer able to do as much as they used to before having MS. Nearly half noted that they are unable to work (43.1%, n=2,374), and a similar percentage of respondents (44.8%, n=2,472) were receiving disability benefits.

The majority of survey participants reported having children (72.5%, n=4,028 of 5,554), and not surprisingly, of those, most felt that MS had impacted their relationship with their children in some way. Check out the pie chart below to see how MS has impacted participants’ relationships with their children:

MSIA children impact

When asked about their relationship status, most reported either being married (61.7%, n=3,417 of 5,541) or in a committed relationship (11.8%, 653 of 5,541). Interestingly, nearly half (46.1%, 1,872 of 4,063) of those who were in a relationship reported being in that relationship for 21 years or more. Similar to the impact of MS on relationships with their children, most participants felt that MS had an impact on their relationship with their spouse or significant other. Nearly half (43.5%, 1,767) reported that MS had “a little bit” of an impact, while 38.7% (n=576) responded either “quite a bit” or “a great deal.” Only 17.7% (n=721) of respondents felt that MS didn’t have any impact on their relationship. Interestingly, an analysis of these data showed that the length of the relationship did not correlate with the level of impact that MS had on that relationship.

Because MS can impact a person’s life in many ways, it is critical that patients have a strong support system in place to help them cope with this condition. MSIA participants were asked some questions related to their support networks, and the majority (58.7%, n=2,941 of 5013) reported having a loved one who is actively involved in managing their MS. Support networks include spouses, children, parents, friends, significant others, and other relatives.

Of the 2,941 people who responded to the question, “How does your caregiver help you manage your MS?,” the majority (74%, n=2,180) said that their caregivers help out during an exacerbation, while most said their caregivers help out with transportation to and from appointments, and many also receive help from their caregivers with managing their medication.

MSIA support system

Fortunately, in addition to loved ones, there are many other resources available to provide support for people with MS. Over 87% (4,267 of 4,881) of those in the MSIA study said that they rely on MS-specific websites to learn about or manage their MS, more than half (68.8%, n=3,357) read MS magazines/publications as a resource, and many (45.2%, n=2,204) also use social media outlets, like Facebook, for support.

Results of the MSIA study confirm that the impact of MS on the everyday lives of patients and loved ones is significant, and that there is great value in the support systems that are available. To read more about this study and to see additional results, click here.

Tell us more about how MS has changed your life! Who and what do you rely on for support?

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Summer Reflection

By: Matt Cavallo

For me, having MS sometimblog pices means more sleep. This is especially the case for me with two young boys, who don’t tend to sleep in and have endless amounts of energy. I find that when the seasons turn to fall and the long sunny days turn to long dark nights, I find myself chronically tired and needing to hibernate. When I feel like I need more sleep, I draw on lessons learned from the summer.

This June, my wife and I decided to drive to take the kids to Legoland in San Diego. San Diego is about a five hour drive from my house, so we loaded up the minivan and hit the road for a three day vacation. Prior to that vacation, I put it in my mind that it was going to be hot and that I was going to be waiting in long lines for the rides, but that I needed to give my kids a vacation to remember.

The first day took a lot out of me. The drive was exhausting. Even though the kids behaved and there was only a little traffic, driving that long can be taxing. However, once we got to the hotel, the kids wanted to play. Even though I was exhausted, we met up with friends and went to the beach. I spent the entire time at the beach playing in the water with the kids. After about twelve hours of going non-stop, we went to the hotel and I crashed.

The next morning came too early, but the kids were up and ready to go. I felt like if I could just get a little more sleep, I would have energy for Lego Land. More sleep was not to be had but we spent an awesome twelve hours running around the amusement park, going on the rides and playing the games. The sun was brutal and beat me down as I waited for ride after ride. By the time we got to bed, I was so exhausted that I didn’t think I could possibly pull it together another day.

The next day came and I needed just a little more sleep, but that was not going to happen. It was day two at Lego Land and the kids were ready. It was a repeat of the first day and the kids were having the time of their lives. We spent another twelve hours roaming the park being roasted in the early summer sun. By the time we got back to the hotel, I thought I was going to pass out from exhaustion, but the kids wanted to swim at the pool. So even though I had expended all my energy at the park, I needed to dig down and find the inspiration for one more hour of activities.

While I was sitting at the pool watching the boys swim, I thought that this is what life was all about. It turned out that I didn’t need more sleep. Sure I was tired and the sun and MS fatigue were wearing on me, but I needed to be there. At this moment, having MS meant time with my sons. So many times, I had let my MS fatigue get the best of me, but I fought through it to create memories that will last a lifetime.

As I look forward to the fall season and the long nights, I think back to that summer vacation. I look back at how I was fatigued and didn’t think I would make it, but created precious memories. For me it is all about getting going, because for me getting started is the hardest part. This fall, I am not going to require more sleep. I am going to spend more time with my sons, because that is what motivates me to keep going. What lessons from summer are you going to use to keep going this fall?

*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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The Empowered Patient: Your Greatest Resource Lies Within

By: Jeri Burtchell

I remember feeling like I’d stepped through the looking glass that day in the hospital. My world became distorted and unreal as the words “you have multiple sclerosis” echoed in my brain. I couldn’t make sense of it; this couldn’t be happening. Suddenly my life as I knew it was over and I could either live in the past, or look to a new future.

It may have been over 15 years ago, but I haven’t forgotten that day. Anyone living with MS was once “newly diagnosed.” We’ve all been there.

So this month, in keeping with MSAA’s theme of finding resources, I’d like to introduce the newly diagnosed to what will become their greatest resource of all. It’s the mental approach we take toward living our best life despite MS. I’m talking about being an empowered patient.

The term “empowered patient” has no clear-cut definition, however it encompasses an overall set of characteristics that sets one apart from the average patient. Empowered patients take an active role in making health care decisions, learn all they can about their condition, compile resources, take notes, and strive to improve their own quality of life. There is no set way to accomplish this; each empowered patient discovers their own path.

For eight years after my diagnosis, I was anything but empowered. I felt helpless, overwhelmed, and despondent. My medication wasn’t working for me even though my doctor insisted it was. I had no idea I could get another opinion, and I trusted him when he said I needn’t try any other medicines.

Then one day my neurologist had a stroke. I was suddenly fighting my MS battle alone. That’s when my journey toward empowerment began. My first step was finding another doctor.

I’d never been very sick before MS, so doctor shopping was uncomfortable for me. I had my primary care doctor pick my new neurologist instead. (My path to empowerment began with baby steps.) It turned out the doctor he chose was the lead investigator for a clinical trial studying a pill for MS.

When I met with him we discussed the drug trial, weighing the risks and benefits. He also told me of all the other available options. Again I had to choose. I was terrified of making the wrong decision, and all of the medicines seemed so scary. But I was more afraid of not being on one of the drugs since my MS was so aggressive. I took home the paperwork to read up on the clinical trial. Three days later I took a huge leap. I decided to join.

Up until then I had been miserable, relapsing 3-4 times a year. Really big relapses that had me in a wheelchair, on a walker, or using two canes. The whole time I suffered, I never thought things could ever change. I thought I was destined to be miserable forever.

But the trial changed my life. I happened to get the real study drug and it worked so well for me, it would be another six years before I had a new relapse.

The positive outcome of my choices reinforced the importance of playing a more active role in my health care.

I learned all I could about my disease and took notes about what others found effective for treating the symptoms of MS. I questioned everything and sought to find the answers. As they say, knowledge is power.

But being an empowered patient isn’t just about making treatment decisions and getting second opinions, it’s also about owning your lifestyle choices, too. I took a long hard look at the things I could change. I gave up smoking and junk food and began exercising more. I saw real improvements. My goal is not just to live life, but to feel as good as I can at the same time.

But if giving your whole life a makeover seems like an impossible task, just take baby steps. Find one thing you can do that positively impacts your health and focus on it. If you need help, reach out for support.

Becoming an empowered patient doesn’t happen overnight. It’s a process that evolves over time.

So if you’re newly diagnosed and feeling overwhelmed, don’t despair. Know that there is an ebb and flow to relapsing MS and if you feel bad now, there are better times ahead. Focus on learning all you can and actively participate in your treatment decisions. If you don’t like your doctor, find another one. Don’t wait for them to have a stroke before you start thinking for yourself.

You’ll find that being your own advocate might be your greatest resource of all.

*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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Thank You Readers! My One Year MSAA Blog Anniversary

By Matt Cavallo: 

It was one year ago at this time, I started volunteering two blogs a month for MSAA. I was thinking about it today as my oldest son got ready for his first day of first grade. One of my first blogs was a back to school blog about parenting with MS, where I cried as I watched him go to school for the first time. I have shared many memorable blogs with MSAA since that time. From the one about a stranger “paying it forward” and buying my meal when he heard my MS story, to my recent birthday blog, each story is intended to provide inspiration and hope through my own journey.

My favorite part about writing the blog for MSAA is interacting with you, the readers. I have met so many wonderful people along this journey. Whether it has been through my personal website or social media, many of the readers of this blog have reached out to thank me for my contributions to this blog. I can’t tell you the tears of joy I experience from all of your feedback. It has been a pleasure sharing my stories here, and I it touches my heart that they are meaningful to you.

Thank you again for all the great feedback throughout the year. I promise to continue writing these personal blogs and sharing my stories and experience with you. Being able to connect with patients like myself makes it worth it. Together, we are making a difference in the lives impacted by MS. Take care and keep up the good fight!

Resource:
Parenting with MS – http://blog.mymsaa.org/parenting-with-ms/

*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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Disclosing MS at Work – Community Experience

Since MSAA first partnered with the MultipleSclerosis.net staff, we have consistently been impressed with their willingness to share in our mission of improving lives today. We are pleased to have them as a regular contributor to our blog MS Conversations.

The majority of people who have MS are diagnosed when they are between 20 and 50 years of age. Because this coincides with the time when a person is most likely to be a part of the work force, people who have MS often have to consider their condition when making work-related decisions. Upon receiving an MS diagnosis, one of the biggest decisions they make may be whether or not to share this information with their employer and/or colleagues. While some people choose to be private when it comes to their MS, others may decide to be an “open book.” One of our patient advocates shared his experience about telling his employer and colleagues about his MS, and many of our community members shared their stories in response. We also asked our Facebook community members to share their experiences with us, and as you can see, people have very different stories to tell.

I’m hesitant to tell my employer and colleagues about my MS

  • Sometimes I will say I have a ‘neurological condition’ but I don’t go beyond that.
  • My experience is that most employers don’t want to hire a person with a condition that will increase insurance premiums. I would never tell an employer or future employer I have MS.
  • I think if I disclose my MS at work, I might lose my job. I can’t even work from home one day when I don’t feel well. I’m expected to be alert, healthy, and on top of my game. I feel like no one cares. As much as people can be compassionate, it is only to a degree. I need to be present, and I’m expected to perform. So, I play my role and I smile through pain and tears and I do my job. I don’t have much choice.

I had to make adjustments due to my MS

  • I had to disclose my MS because it could have become a safety issue at work, so my responsibilities needed to be adjusted accordingly.
  • I could no longer be productive and I became a danger to the public and myself. My employer knew before I did that I was having trouble. I drove an 18-wheel truck and set up POS networks. I just could not do the work anymore. Some of my employer’s family members had MS. The truth is I loved my work I had to come to grips with the fact that I just could not do it anymore. It’s important to be truthful to yourself about your capabilities at your job and then make a decision.
  • I had to go part-time instead of full-time three years after being diagnosed because of my symptoms and a number of relapses. However, I’m still trying to “stick it out” and remain employed because I find it quite fulfilling; if I don’t work, I get bored way too easily.

I wish I hadn’t said anything

  • Despite it being a private matter, even with HIPAA laws, word spread fast about my diagnosis at my work and people immediately started treating me differently.
  • When I told my employer, his response was dismissive, as if to say, “and what do you want me to do?”
  • My employer lacks compassion. Unfortunately, a few of my coworkers went out of their way to make it even more difficult for me.
  • I was essentially forced to leave, and I was then denied long-term disability benefits through my employer. Thankfully, I hired an attorney and eventually won.
  • I lost my job when my employer found out.
  • I lost my job of many years shortly after I was diagnosed in the 90s. Of course, they didn’t say my illness was the reason behind losing my job, but it was obvious to me. It was heartbreaking to lose a loved career after working so hard for so long.
  • I shared during my original interview to explain why I had balance issues. When a full-time position later became available, I applied and was told that they would not award me the position due to my MS. My boss said that if I became unable to work, they’d have no one to cover the additional hours. Although I sort of understood, it was blatant discrimination, and I reported it. My boss lied, saying she had never said that. I am still working there, as it is a job that I love with hours I am capable of handling.

Sharing my MS diagnosis was a positive experience

  • My boss is understanding, even though I can’t do everything I used to do.
  • My employer and coworkers have been very kind and understanding. It’s actually harder for me to tell people about my MS on dates than it was when I told my employer.
  • I’m glad I came “out.” My coworkers are very respectful, and I found out my boss’ wife also has MS.
  • Had I not told my employer what was going on, I would have missed out on being connected with the best MS specialist in my area. My boss happens to have connections who were able to get me in with my doctor, who was not accepting new patients at the time. Telling my employer was the best thing I ever did! Also, it is my personality to be very open, so it was never even a question in my mind. I do realize though, that in other positions, it might not have been the same situation, and I might have kept it under wraps if I knew it might mean keeping my job or not.

It’s important to note that there are employment discrimination laws in place in the US to protect you, particularly through the Americans with Disabilities Act (ADA). A legal resource such as the State Office of Protection and Advocacy, The Job Accommodation Network, or the Equal Employment Opportunity Commission (EEOC) may also be able to assist in helping an individual to determine what rights they have regarding disclosure, workplace accommodations, and/ or determining whether discrimination may have occurred after a disclosure is made. It is unfortunate that some people have had negative experiences when sharing their MS story with employers and/or colleagues. One can hope that this will improve over time, especially with an increasing awareness of MS.

Have you told your employer that you have MS? What was your experience? What advice would you give someone with MS (or any other chronic condition) regarding disclosing this information?

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