The Affordable Care Act and Multiple Sclerosis

The Patient Protection and Affordable Care Act (PPACA or ACA for short) passed in Congress as a landmark piece of legislation with the intent of securing more accessible healthcare for all Americans. At MSAA, we often receive calls with clients curious and/or concerned about what these changes to the healthcare landscape may entail for them. The Affordable Care Act has enacted numerous changes to both private and public health care coverage (this includes Medicare and Medicaid).

On the private insurance side, here is a short list of just a few reforms that will be enacted starting October 1st:

1. Pre-existing condition exclusions have been eliminated, and insurers can no longer deny applicants based on their MS disease status.
2. Insurers must justify any monthly premium increase of 10% or more before it can take effect.
3. No consumer will be subject to yearly or lifetime benefit caps, which was a major issue for those with MS.
4. If you need to purchase a private plan insurance, it will now be offered through an Enrollment Marketplace in each state.

For Medicare and Medicaid:

1. The percentage for what you pay inside the Medicare Donut Hole will be decreasing every year until it is closed in 2020 and the out of pocket expense will be 25% of the plan’s medication cost.
2. Medicare beneficiaries will receive free wellness exams every year to ensure adequate preventative care.
3. As for Medicaid, for those states that elected to participate, the eligibility criteria will expand to 138% of the Federal Poverty Level or $32,499 for a household of four, for example.

These are just a few of the major reforms that will be taking place under the provisions of the ACA. MSAA has enacted a new initiative to expand education on this topic, including webinars that will focus individually on the changes to Medicare and private insurance.
The first webinar, “Understanding Medicare in the New Era” will take place on October 15th at 8 pm and will be presented by Katherine Fitzpatrick of the Medicare Rights Center and MSAA Client Services Manager, Margaret Weisser and registration is currently open. Registration information for the second webinar on the new State Marketplaces and Private Insurance is forthcoming.

You can register for the Medicare Webinar at: support.mymsaa.org/aca1
We look forward to “seeing” you there!

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Managing Multiple Sclerosis: How an MS Diagnosis Affects More Than Just the Patient

 

By Gayle Lewis, Ph.D.

When thinking about the idea of “managing MS,” more than likely you immediately think about the patient and how he/she is dealing with, incorporating, accommodating to, accepting, grieving…and having many other reactive and thoughtful coping styles for getting used to being diagnosed with multiple sclerosis. Certainly in my work, this is something that I focus on regularly with my patients: how to help them manage their MS. Whatever that might mean for the individual.

But managing MS is NOT JUST ABOUT THE PATIENT. It is simultaneously about the microsystem surrounding the patient, including partners and other family members. We can consider that “managing MS” needs to be looked at more globally, relationally and more systemically than just individually. That the trauma of MS diagnosis has many fingers of whom is affected and therefore who has to manage it.

My work more often than not involves discussions about my patients’ respective relationships with the people in their lives, particularly if a partner is involved and always when there is no partner, but the wish for one remains. Many relational areas get covered in sessions, but thematically, I hear over and over again the feeling of or actual act of being rejected; the reasons given are either directly stated to be because of the patient’s MS or indirectly communicated that MS has interfered so substantially in the relationship, the situation is no longer viable. Then there are the rejections that occur in which the partner/family member/friend remains as a figure in the patient’s life, but creates enormous distance between themselves and the patient, with the space between them being filled with uncertainty, anger, resentment, loss, sadness, disconnection and the like…feelings felt by both patient and their “people.”

And while I absolutely empathize with patients who feel rejected/are rejected by their “people,” I also have great empathy for the “people,” who are the ones patients rely on, who become the caretakers, who are tasked with increased responsibilities they may not be prepared for nor wished for when they got involved with said-patient. They didn’t sign up for this! Managing MS is NOT just about the patient, as I said. I work with people whose partners have had very strong reactions after a diagnosis of MS was given: some may reduce or stop sexual intimacy; or become increasingly snappish and intolerant when the patient struggles to do tasks at home that were previously rote and done with little effort, like removing dishes from the dinner table and bringing them to the sink; increasingly spending more time out of the house and away from the relationship, finding the patient’s symptoms too difficult to tolerate and too frustrating to face regularly; in some cases a partner may even leave the patient after diagnosis never to be seen from or heard from again. In one case a partner telling the patient that he needed to break up because he could not deal with her MS, even though she was asymptomatic and, in a meeting with the doctor (requested by this boyfriend), the doctor presented a very optimistic picture of the patient’s likely path with her MS. That boyfriend apparently did not want to pay attention. He was mostly concerned that the patient would end up in a wheelchair and he would have to take care of her, which he did not want to do anytime soon.

In all of these examples people are reacting to a situation (MS diagnosis and its sequelae) in ways that speak to how awful and traumatized they are feeling about what is going on. These are not the only examples I have; there are ones in which partners step up, learn about MS, specifically their partner’s MS, where they are supportive in loving, generous ways, when they actively participate in their partner’s treatments and step into not out of what is happening. But even those “angels” have to face and deal with the trauma of being with someone with a progressive, chronic illness. No one is immune from the impact of that. I frequently see or hear about relational pathology as couples/family members adapt to an MS diagnosis. But, I also see that many of the partners or family members willingly participate in treatment or get their own treatment or even join a group with others who have a person in their life with MS and are having difficulty managing what the diagnosis means to them.  All of these latter tactics can be very constructive…and all are a process, as is managing MS…it IS a process that is evolving and ever-changing and one that needs to be open to the idea that it’s NOT JUST ABOUT THE PATIENT.

*Gayle Lewis, Ph.D. is a psychologist and psychoanalyst in private practice in New York City, Associate Clinical Professor, Department of Neurology, at NYU’s Langone Medical Center, and Staff Psychologist at Juilliard’s Counseling Center. Additionally she is a graduate of both the American Institute for Psychoanalysis and the EDCAS program at the William Alanson White Institute. She specializes in the treatment of trauma, eating disorders and individuals with Multiple Sclerosis. See www.drgaylelewis.com

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Preparing for the Change of Seasons

By Matt Cavallo

Many of us living with Multiple Sclerosis welcome the change of seasons. Gone are the dog days of summer and the pseudo-exacerbations (brief flare-up) associated with heat. While the heat is no longer a factor, the change of seasons can present other challenges to those of us living with MS. In a speech to the University of Lille (7 December 1854), Louis Pasteur said one of my favorite quotes, “Chance favors the prepared mind.” The following self-management techniques will help you prepare for the challenges that the change of season present for those of us living with MS:

Self-Management Tips for Change of Season Issues

1. Eating healthy: Fall and Winter are associated with a lot of festive eating. Halloween candy, Thanksgiving dinner and all the holiday parties, provide lots of yummy food and treats but also provide many opportunities for us to overeat. Some ways to keep your diet in check:

  • Eat three meals a day. Breakfast is the most important meal of the day. Skipping breakfast may lead to overeating later.
  • Eat smaller, more frequent meals to keep your energy up.
  • Avoid large portions and desserts that can increase fatigue.
  • Keep a food diary and write down everything you are eating to stay on track and keep you accountable for healthy choices.
  • Drink plenty of water.  Dehydration can be confused with hunger.

2.  Preventing falls: Rain and snow in fall and winter can lead to an increased risk of falls.

  • Safeguard your entrance and exits with mats to absorb moisture.
  • Wear appropriate shoes with proper treads to provide more grip on slippery floors and sidewalks.
  • Stock up on the supplies you need to weather any storm that hits, so that you don’t have to run out during a storm.

3. Exercise: Cooler months can mean less opportunities for outdoor activities, leaving some less active.

  • Find ways to fit in exercise despite the weather.
  • Work out indoors at a local gym or in your own living room with exercise DVDs.
  • Many local gyms, like the YMCA, have indoor pools. Aquatic exercise is good for those with limited mobility.
  • You can also use swimming to raise awareness for MS through the MSAA’s Swim for MS program.
  • Mall walking is a good way to get in exercise on a rainy day.
  • The key is to keep moving!

4. Managing stress: Fall and winter months can increase stress from increased holiday parties, financial expenses and family obligations.

  • Don’t overextend yourself.
  • Set a realistic plan for what you can commit to and stick to it.
  • Take time for yourself to relax and decompress.
  • Exercise and eating healthy will play a vital role in helping to keep your stress levels at a minimum.

Each season can bring a unique set of challenges for persons with disabilities, but preparation and knowledge of self-management skills will help you anticipate and overcome those challenges to enjoy the best of what the season has to offer.

*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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Talking with Friends and Family about Multiple Sclerosis & its Symptoms

For this month, we focused our blog around managing MS.  Some helpful tips were provided and the one that sticks out to me was about “asking for help”.  Understanding your limits and what you are able to accomplish in a day is a great way to conserve your energy and focus on what is important.  Often times it is important to involve those around you, but navigating the “how to” is a challenge.

For those who struggle with the symptoms of MS that may not be visible (i.e. fatigue, pain, and cognitive changes), the hidden symptoms of MS, asking for help from a friend or loved one can often be a daunting task.  We frequently hear and read stories from individuals who feel guilty asking for help, because they don’t feel that they “look” sick.  They fear they will be judged in asking for help.

It may be helpful, before you tell everyone about your MS symptoms to think; does this person play a significant role in my life? And, can I rely on them in the future if I need help?  If the answer to both of these questions is yes, then it is time to put on your teacher hat and educate those identified helpers about what types of symptoms you experience and what they may look, or sound like, for you.  MSAA’s The Motivator Winter/Spring 2013 edition discusses may of the hidden symptoms of MS: http://www.mymsaa.org/publications/motivator/winter-spring13/.  This publication can be shared with friends and loved ones to further provide education and information.

Not every person with MS experiences symptoms in the same way, so providing information as to how MS looks and feels to you is very important.  With more understanding and better education, we can hope to reduce the stigma around the hidden symptoms of MS and promote a more positive experience for both yourself and your loved ones.

Please share your experiences, have you had to educate your friends and loved ones about the symptoms of MS?  What has worked for you?

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Dealing with Changes in Weather When You’re Living with Multiple Sclerosis Symptoms

Well, I can honestly tell you that I’m looking forward to the change in weather. Dealing with multiple days of 100+ degree weather is NOT fun.

The heat really bothers my MS, but then again so does weather change in general. I know I’m not the only one… but it’s really hard to deal with the way my MS “acts up” when the weather changes… it’s not something we can control (obviously).

By keeping an eye on the weather forecast, I know what to expect, but I also know that when the weather changes (which it drastically does in the great state of Texas) I need to take it easy. It sometimes feels as if my body is protesting the weather change… it doesn’t help that I have arthritis as well, from being a walking accident most of my life and breaking bones non stop.

I know everyone that lives further north, has a hard time dealing with cool weather, but I don’t have that problem, and I frequently joke on how I want to live in Alaska, or something. Where I wouldn’t have to deal with the constant heat here in Texas!

One way I’ve found to “help” my body’s aches and pains from the weather change is taking an Epsom salt bath. It really helps me relax, and I make sure not to have the water TOO warm. But, it does ease the ache my body gets when the weather is changing.

That’s all I have found that helps a little bit, when dealing with the weather… but I would love to hear how others cope with it.

It’s too bad we couldn’t conquer an Island, and name it MS Island, where it’s a wonderful 70 degrees outside constantly… One can dream :)

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Getting a Second Opinion When You’ve Been Diagnosed with Multiple Sclerosis

So when I was diagnosed with MS, a general Neurologist diagnosed me. Everything was so hectic at the time; I was just trying to understand what was going on … and why I needed to get IV Steroids…

I had never heard of MS, so I was trying to find out everything I could about it. Once the initial shock wore off, I had multiple people ask me if I had received a second opinion. At the time, I was getting aggravated, wondering why everyone was in denial, when I was just trying to cope w/ the changes going on in my life.

I finally decided to get a second opinion, not only from a different neurology office, but also from an MS Specialist.

I can honestly say, that was the best decision I had ever made. Come to find out my general Neurologist was intelligent, yes, but didn’t know as much as my MS Specialist did, and it turns out I was being over medicated on things…

I honestly don’t think I would be where I am right now in living with MS, if I hadn’t gotten that second opinion, which others were suggesting I do. I later learned that a lot of people get a second opinion, or want to see a Specialist in the MS field to ensure they are receiving the best care possible.

I know some people who have had more than 2 or 3 opinions on their diagnosis, and I’m glad I only had to make one change in neurologists, rather than keep on searching.

It’s very odd to think back and see the difference in the opinions of my previous and current neurologist. While they are both very well educated, they just treat their patients differently than one another. Which, in this case, was a VERY good thing. (Did I mention that my diagnosing neurologist stuck me SEVEN times, yes that’s right SEVEN times, to get my spinal fluid for a lumbar puncture aka spinal tap.)

I think all patients should exercise their patient rights… if you aren’t comfortable with your current neurologist (or any physician for that matter) you have a choice to find someone you are comfortable with. It’s a VERY important matter, considering your health is in their hands, so to speak.

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Where Do I Fit This In?: How to Prioritize When You Have MS

Let’s face it, life is hectic. It can be messy and chaotic, and that could be just your morning. We live in a world that thrives on fast-paced routines and schedules, so people rarely have time to manage their day to day, let alone trying to manage a chronic illness like MS. Medication and symptom management play a significant role in the course of this disease, so it can be challenging to find time in the day to fit these tasks in along with life’s expectations in general. How does one try to find time to rest, or jot down questions to ask the doctor at the next visit, or to document a new symptom that has come on? There seems to be a limited amount of hours in the day to complete all of these demanding limitless activities.

Here are some tips on how to manage these tasks along with the day to day:

  • Make time to take breaks. When you have a chance to rest, do so, even if for just a few moments in the day. It may be what you need to give yourself a boost or to take the time to write down a question for the doctor.
  • Have someone else help you! It’s challenging for some people to ask for help, but if it allows time for you to take care of yourself, ask!
  • Use the MSAA’s mobile phone application My MS Manager to help keep track of your symptoms and medical records, as well as current MS related news.
  • Prioritize! Sometimes there just isn’t enough time in the day to complete all tasks, but your health should be a top priority. Make yourself a list of attainable tasks to perform in a day, and make sure health related tasks come first.

What are some ways you manage the day to day?

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Fall is Upon Us!

As the calendar reminds us to say goodbye to the summer season and hello to the beginning of fall, it’s a good time to start thinking about what the change of season means to you. Some people see the season change as something to embrace; to take advantage of being outdoors to enjoy the cooler temperatures, or to prepare for upcoming fall festivities and holidays that approach just as quickly as the seasons change. Do you enjoy the cool, leaf laden fall atmosphere? What about the shift from longer days to longer nights?

Children heading back to school and stores stocking up on holiday decorations are just some of the hallmarks that depict the fall season. The sound of leaves crunching under feet; the orange, red and yellow colors that paint the streets and the sight of birds making their way south for the upcoming winter months are some of the scenes that represent this fall solstice. What do you like most about the fall?

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The Time is Now to Start Something New: A Quick Step Guide for the MS Community

“Your present circumstances don’t determine where you can go; they merely determine where you start.”

–Nido Qubein

As the summer comes to an end and we embark on the last few months of the year, it is time to challenge ourselves and start something new.  Just as the kids prepare for the new school year, prepare yourself for a new task.  Is there a goal you wish to accomplish, a skill you would like to learn, or maybe just a good book you’ve been meaning to read?

Starting something new can be scary, especially if you have tried unsuccessfully in the past.  But from failure we can learn, and today is a new day.

  • First, decide what it is that you want to accomplish.
  • Second, set measureable goals for yourself, or mini-goals to help move you along.
  • Third, make it realistic.  Many little successes over time reinforce your goals and set you up for success.
  • Fourth, set a deadline, but make sure to provide yourself with a reasonable amount of time to accomplish the task.
  • Last and more importantly, reward yourself!  Even if you haven’t succeeded, you set out to try something new and have probably learned some things along the way.

Starting now, what goals would you like to accomplish?

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Parenting with MS

By Matt Cavallo

Watching my oldest son, Mason, turn and walk into Kindergarten for the first time sent a flurry of emotions through my soul. I was feeling both proud and incredibly sad knowing that my baby was now a schoolboy. The sadness came from deep inside remembering back to how hard it was for my wife to conceive due to issues I was having as a result of my Transverse Myelitis and MS.

The pride came from thinking back to a childhood friend. When I was in Kindergarten, I had a friend in my neighborhood named Conner. His mother had Multiple Sclerosis and she was confined to a wheelchair. Even now, I remember Conner’s strength and the sacrifices he made as a five year old to care for his mother.

When I was diagnosed with MS, my biggest fear was that I was not going to be able to be the dad I had always dreamt of being. Deep down, I didn’t want my child to have to care for me in the way that Conner had to care for his mom. Now, eight years after my initial diagnosis of Multiple Sclerosis, I proudly walked my Mason to his classroom, hand in hand.

As he let go of my hand and I watched him walk into a new chapter of life, I knew that his understanding of the world was going to grow each and every day. With his new understanding of the world, comes a new fear. How do I explain to him that his daddy is different from the other dads? How do I tell him that I have a neurodegenerative disease and that the big, strong guy he knows might not be that way forever?

As a young dad with a chronic disease, I have been looking for a way to talk to my boys in words they can understand. Especially for Mason who now has more questions than ever before. One of this resources that I have found in my search is, Daddy’s Story: An Introduction for Younger Children to Learn about a Parent’s MS. This is an illustration book for younger children that helps explain MS in words they can understand (don’t Matt and sonworry, moms – there is a Mommy’s Story too). With this resource, I am able to have a conversation with my boys and answer the questions that they have about my condition.

Knowing that there are resources to help me talk to my kids about my MS in a way that they can understand has helped to mitigate my fears and focus on the pride I have in raising two people who are loving and caring individuals.

*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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