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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Assistive Technology for Individuals with MS

Over the course of years living with a disease such as MS, there may come a time when more assistance is needed to complete daily activities. Perhaps typing on the computer is becoming a challenge due to spasticity, or driving a vehicle has become difficult because of numbness in the leg. While it may not always be conducive to ask another person for help, perhaps a piece of equipment can aid in getting the task done more effectively. Assistive technology, or AT, is any item, piece of equipment, or software that is used to increase or improve the functional abilities of individuals with disabilities at school, work, home, and in the community.

Young woman with tablet computer and coffee

Assistive technology devices can assist those who may have difficulty with speech, typing, writing, cognition, walking, etc. In each state, a State Assistive Technology Project is available to provide information on assistive  technology and consultation about the type of technology piece that may be helpful. A borrowing program may also be available where the devices can be borrowed for up to a certain period of time to see if the device will be effective. Information about available loans to help with more expensive devices can be discussed as well.

In trying to determine the type of device that may be helpful for a specific need, working with a rehabilitation professional such as a physical or occupational therapist might help to clarify the type of device that would provide the best assistance. They can make specific recommendations of devices that can assist with a variety of needs and may also help with checking whether insurance will cover the item recommended.

What assistive devices have you used? What avenue did you take to receive the device?

 

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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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My Silent Hero

By: Sheryl Skutelsky

After years of having every part of my body in pain at various times through my twenties, I’ll never forget the day in October 2001 when I finally heard those words, “You have multiple sclerosis.” I didn’t yet really know what those words meant, but I was relieved to finally have a name for what doctors had been telling me for years was just stress.

I went home that day to look MS up on the computer, and I have never stopped learning. Knowledge is power, and I truly believe that my attitude has a great deal to do with how I live my life with MS.

I was very excited when I was offered the opportunity to write for MSAA because it meant I could reach more people with the valuable lessons that I’ve learned over the years.

I’ve been blogging about MS now for years, having covered topics that range from explaining what MS is all about to how to deal with summer heat. However, I have never written about the person that has been my rock through all my ups and downs.

My partner not only has to imagine what it’s like each day for me to deal with pins and needles, numbness, shooting pain, aching, dizziness, nausea, and overwhelming fatigue, but she also has to live with the same uncertainty of waking up each day and not knowing if we can do the things that we had planned. She is the only one that truly understands how I can look so good on the outside and feel so miserable on the inside. She gets it when I have to cancel plans because I did too much the day before.

When we met, I was relatively healthy. She did ask me what hurt every day. It got to the point where she asked me if my left earlobe hurt because she was just trying to find some part of me that didn’t hurt, but she didn’t sign up for a chronic disease. That news came as a shock to both of us.

Thanks to MS, I’ve learned to truly take one day at a time. I wake up grateful for each day that I can walk, but I also wake up grateful that I have someone in my life that will stand by me no matter what. It would do us all good if we remembered to let our significant others know how much we appreciate all that they have done for us by sharing in living with the uncertainty of life with MS.

*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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Getting Help at Home When You Have MS

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With years of increasing research and data on the condition of multiple sclerosis, it’s known that MS can be unpredictable and ever-changing in its course, potentially having an impact on different aspects of life for those affected. For some individuals, there may be a time when MS symptoms create change that requires additional assistance in the home, to try to help manage daily activities and duties of the household. Meal preparation, shopping, personal care, and chore responsibilities are some things that may require extra help and attention to complete. Asking for this help can be difficult for some; noticing that how things were done before may look different now and that more help is needed for certain tasks can be hard to accept. Change can be challenging, but it’s important to know that you are not alone in this, that at one time or another everyone’s asked for help, no matter the task. Figuring out what your needs are in the home and where to find help are important parts in starting this process.

Examining what it is that you need help with in the home is a good first step in trying to find assistance. Talking with healthcare professionals like your doctor and possibly a physical or occupational therapist can help determine what your needs are in the home pertaining to your medical condition. Family, friends, or significant others can assist you with this process as well, providing feedback as to what may be helpful and needed to complete certain tasks and duties in the household. Whether it is personal care attendance services or assistive equipment devices, there are a range of services that may be beneficial to you. After your needs have been assessed within the home, supportive resources and contacts can be made to identify potential sources of this assistance.

If you have health insurance coverage, a contact can be made to your insurance provider to identify potential equipment items or in-home health care services that may be a part of your coverage plan. Your insurance provider would be able to explain what services, if any, are offered within your particular health plan. In regards to possible community supports, there are homecare resources and service programs offered through county offices in the U.S. called area agencies on aging. These county offices provide information and referral services regarding community homecare assistance to those with disabilities and older individuals. They maintain a database of information for home health services in the area, as well as caregiver resources and support services. To search for your local area agency on aging, visit the Eldercare Locator website.

For individuals whose needs may not currently be at the level of requiring additional assistance in the home, it may be beneficial to explore long-term care options to have a plan in place for potential future needs. Researching long-term care insurance coverage options and other benefits can be useful to attain additional information for homecare services. The non-profit organization Life Happens provides education concerning long- term care insurance benefits and ways to find coverage.

If you do find you need additional assistance in the home, it may be helpful to have a discussion with your doctor first in regards to what your needs are, as this can lead to identifying sources of support within the community.

 

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Mining the Web for MS Resources

By: Matt Cavallo 

**Disclaimer: For any new or worsening MS symptoms, please contact your doctor immediately**

The internet is full of good (and not so good) information about multiple sclerosis. There are trusted sources, personal blogs, and social support groups regarding MS. Like everything else in life, when seeking more information about the disease, you must consider the source. The following blog will discuss some online traps that I have fallen into and how to avoid them.

In my mind, a good site for healthcare information should never promise a miracle or solicit patients for money. For example, I was following a very compelling Facebook thread posted in an MS support group linking to the story of a patient. I’m a sucker for a good story, so I started reading about this person and how they overcame all of their MS symptoms. At the bottom of the page, there was a link to their “miracle treatment,” and it brought me to a multi-level marketing website ad for some vitamins.

They drove me to the site with a good story, but their promise of a cure for MS was way off base. Multiple sclerosis is a chronic condition with no known cure, so to promise the people who click on this website a cure is false advertising. Be skeptical of buying any supplement that is either not prescribed to you by your doctor or that you have not discussed with your doctor prior to purchasing. This goes for assistive devices, as well. Before considering any assistive devices, contact your doctor or insurance company to see if the device is approved. You may get an idea from a website, but by going through your doctor and insurance company, you may find that the device, or a similar device, is covered.

As for trusted information, my favorite site is MSAA. In fact I like them so much, I am a contributing blogger for them. I found MSAA because I was looking for educational material to help explain MS to my young boys. What I found was a free picture book that I read to my boys that helped explain daddy’s condition. I found other resources, like their online Relapse Center. Every resource on the MSAA website is evidenced-based and peer- reviewed, so I know that the information is coming from a reliable source.

Another source for MS information that I trust is Healthine.com. Healthline takes complicated medical terms associated with MS and other chronic illnesses and puts them into slideshow format in words that are easy to understand. They also have great weekly columns from fellow MSAA blogger Jeri Burtchell and provide links to MS resources. MSAA and Healthline are my two personal favorite websites to find objective, clinically reviewed information about MS.

Social media is also a great place to find MS support groups and information about the disease. I belong to several social media support groups where members interact online. If you are going to engage in these activities, you must keep in mind personal biases. Participate in an online support group for support, but not for medical advice. These groups are great when you are having a bad day and want validation from your fellow MSers, but I have also seen solicitations or treatment recommendations based upon personal bias. Remember, you and your doctor should make all treatment decisions together, and what you read in an online forum may not be entirely accurate.

The internet is a great place to mine MS resources. There are trusted sources, like MSAA and Healthline, great personal MS blogs, and social media support groups. Just remember to be aware that some of these sites may be trying to solicit, not support you. Any research-based article will say something to the effect of “clinically reviewed” or have a clinical reviewer in the credits. Any website that promises you a cure is a red flag to stay away.

As a person living with MS, the best thing you can do is educate yourself to the disease and others’ experiences living with the disease. The internet is a great place to find resources, but make sure that you can trust the source. Let me know if you come across a good MS site that I haven’t mentioned. Happy mining!

MS Web Resources:
MSAA – http://www.mymsaa.org/
MSAA Relapse Resource Center – http://relapses.mymsaa.org/
Healthline Multiple Sclerosis Center - http://www.healthline.com/health/multiple-sclerosis

*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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It’s all relative.

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Sometimes it may seem like things are spiraling. Maybe the bills are piling up, the stress level in managing home life or work is rising, and you are worried that you are headed for an MS Relapse if you keep going at your current pace. When things feel like they are outside of your control, it is easy to “cycle”  or consistently think of the negative aspects of what is going on. The whirlwind of negativity can affect not only your mood and health, but also your relationships and ability to accurately read cues from others and be empathetic.

When your co-worker is acting totally checked out and you are annoyed that she hasn’t helped you with a joint project, you might think she is acting uncaring, but maybe she didn’t tell you her brother is very sick in the hospital. When the dentist office calls for the third time to cancel your appointment and you just feel like screaming at the scheduler, you may not know that she is stressed out because other office staff keep flaking out on their scheduled appointments and making her job harder.

Yes, it is okay to have a bad day or a bad week. It is okay to not put on a “fake it ’till you make it” smile when you feel like nobody understands what you are dealing with, but when you start to get caught up in the negativity tornado and are on the borderline of snapping, remember that everyone is dealing with something. Yes, some of those “somethings” are more manageable than others, but they all impact and make a difference in the lives of the people living them. Focusing on the idea that everyone is living their own journey with different successes and challenges can help us to maintain balance; we are not alone for the ride. When things start to spiral, try to remember that everything is relative.

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6th Annual MSAA Lone Star Roundup Cattle Drive

Join us for the 6th Annual MSAA Lone Star Roundup Cattle Drive and ride with honorary Celebrity Trail Boss, country star Clay Walker!

October 9th – 12th, 2014
Learn more & register at mymsaa.org/cattledriveLonestar Roundup_3

You, your friends, and your family may have walked for MS. You may have ridden a bike for MS. You may have even participated in Swim for MS. MSAA now invites you to add a horse into the mix and join us for an adventure of a lifetime – all while benefiting those who have MS!

Register to ride

 

 

When: October 9th-12th, 2014
Where: Beaumont Ranch in Grandview, Texas
(just a few minutes south of Dallas/Fort Worth)

Learn more about the Lone Star Roundup Cattle Drive

All money raised at the Cattle Drive will go toward supporting the many programs and services MSAA offers to improve lives today for the entire MS community.

An Intimate Evening with Clay Walker

 

 

 

This year, come meet our honorary Celebrity Trail Boss - country star Clay Walker, who will be riding one day of the event. Then, enjoy an up-close and personal concert from Walker, included after the Cattle Drive on Saturday, October 11th, 2014. Additional tickets can be purchased.

Any questions, please call (800) 532-7667, ext. 137 to talk to Becky Remington, your Trail Boss!

Yee Haw! Hope we see you there!

Register for the MSAA Lone Star Roundup Cattle Drive

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Identifying Community Resources for Individuals with MS

Working on the MSAA Helpline, we receive a wide array of calls asking for assistance locally within the community. Whether it is for in-home services, help with transportation, or housing assistance, the Helpline specialists work with the client to find a local group that can be of assistance. While it is challenging to find an MS-specific organization in the area, there are some local organizations designed to assist those living with a disability to keep them living independently in their homes.

One of the more common programs Helpline Specialists refer to is the Centers for Independent Living. These non-profit centers are consumer-controlled and located right in the community or surrounding area. These centers are staffed by individuals with disabilities and provide a variety of independent living services.

Fifty-one percent of staff, as well as the Board of Directors, within the Centers for Independent Living are individuals with disabilities. These centers provide four core services: information & referral, independent living skills training, individual and systems advocacy, and peer counseling.

While not MS-specific, the Centers for Independent Living understand the challenges faced when living with a disability and can make suggestions or provide direct programming to improve the quality of life of those living within their regions.

Search for your local Center for Independent Living and reach out to learn about the opportunities and assistance that may be available to you and your family. It can be challenging to reach out for help and support, especially if you are not quite sure of the need you may have. Start by talking with one of the peer counselors or support persons; in talking with them, you both may be able to clearly define some of the needs you may be having.

Have you reached out to community resources in the past? In which ways were they helpful to you?

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