Working for the Multiple Sclerosis Association of America

By Becky Remington  

Greetings from the South Central Region.  Last week, I attended a patient education program in Bentonville Arkansas, and as always, I feel like I have the most wonderful job in the world. One of the perks of my job is meeting amazing, warm, and caring people.   Some of these people have MS, some of them are family members and spouses, and some of them come to the programs with their best friend, who just happens to have MS.  And many times, as was the case this time, complete strangers sit together, start talking, share a meal together, talk some more, and exchange phone numbers or email addresses before the end of the presentation.

Last week’s talk was on Managing Stress and Anxiety.  The speaker, a psychologist from Dallas TX, was excellent, giving a lot of practical advice and tips to those that attended.  I have no doubt some of his stress relieving exercises will find their way in to people’s lives and make a difference in helping to keep some MS symptoms at bay.  But I also know that those who made new friends left with something even more valuable.

Becky Remington is MSAA’s South-Central Regional Director

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Keeping Track of your MS

I thought I would share a “tip” on how I keep track of my MS – so I’m able to recall things when needed or share information with other members of my health care team (who are not my neurologist).

So here is what I’ve done. I went and bought a HUGE binder… and I requested all my Medical Records… Personally, I had to get medical records from my diagnosing neurologist (general neurologist) and my MS Specialist neurologist. But I also got my records from all my other doctors.

I find this a lot easier when I need to recall past treatment… while I can sit here and name off MS treatments I’ve taken, I can’t always recall the dates in which I was on certain medications and/or received a specific treatment for something.

My medical records binder also includes my MRI reports. I also requested my MRI reports from the radiology clinic, because I’ve found that when I have a followup appointment, and I have the records on hand… it’s easier to go over with my neurologist… especially since results can take some time to be sent.

Now let me say that this is a work in progress… because I’m always getting more medical records… I usually collect them after I have a “change” in my health… or every 6 months.

I also take the time to place my records in order by date. So it’s kind of like a binder timeline of my MS…

I’m currently working on getting dividers for the binder. While I like things in order by date, I thought it would be beneficial to categorize things further, for example: Primary Care, Neurologist, MRI Reports, etc. I’m also contemplating getting a small binder for each category, so if needed, I can take a binder with me.

It’s all about personal preference… and honestly… some people could carry their medical records with them at once… but I have A LOT of records, so that wouldn’t be so easy.

It may not be needed a lot… but I can tell you that I’m very happy that I requested my records… because it has helped me make  decisions since I was diagnosed. For example, I decided to change from my diagnosing neurologist, to a specialist. I had been contemplating the idea, but then  I went over my medical records and I saw that there were things documented in the records that were “discussed” with my mother and I… that actually were NOT.

Just know that as a patient, you have the rights to your medical records. You never know when they might come in handy and they may help to keep you on track.

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Life with MS and Cognitive Issues: You Never Know What to Expect

By Jeri Burtchell

Ever since telling my family and friends I’d be writing a blog post for MSAA on the topic of cognition, they have been ribbing me. The irony of the most absentminded person they know writing about memory loss is too amusing to ignore.

All kidding aside, cognitive issues can be a serious and bewildering symptom of MS. One that can creep up stealthily and impact every area of your life–and it’s more common than you might think.

My reputation for forgetfulness goes back a long way, predating my diagnosis of Relapsing-remitting MS in 1999. I’ve had memory problems for as far back as I can recall.  However, how far back I can recall is debatable.

I start each day with my cognitive cup full. In the stillness of a quiet house at 5 a.m., I approach life hopeful for a day filled with accomplishments. Morning is when I do my best thinking. But I know what’s coming and I prepare in advance.

As surely as the sun crosses the sky, I’ll begin my descent into a foggy, cognitive swamp by midafternoon.  Having a plan that helps me get through the day without being overcome by frustration is kind of like having a little set of crutches for my brain.

A huge dry erase board serves as my calendar. Using multicolored Post-it Notes, I translate my life’s chores, celebrations and obligations into a color-coded explosion of reminders. When a fleeting thought of something important lands briefly on my conscious mind, I grab it and quickly trap it in a sticky note. The important thought is added to my calendar, displayed like a butterfly on a pin board.

Green Post-it Notes are work-related and sprinkled all over the board. Yellow is for appointments and domestic duties; pink reminds me to pay the bills. Orange is for anything related to the kids, who have so many extracurricular activities that even a fully functioning brain would have trouble keeping up.

Although it all sounds good on paper, in reality, I’m grasping at straws. I frequently find myself herding well-intentioned sticky reminders from left to right in a multicolored cattle drive across the calendar as accomplishments go unfinished.

So why does this happen when I’m determined to plan out my day? Well, because of websites like Facebook and Pinterest. Or it could be as simple as someone asking me a question that leads my brain astray.

“Jeri, do you know where the phone book is?” my mother asks.

“No, Mom, let me look around.” I reply.

Fifteen minutes later, the Great Phone Book Hunt has yielded nothing, I end up Googling the number for her instead, and whatever task I was working on has slipped to the bottom of the cognitive swamp, totally forgotten.

Thankfully, even though my family members tease me, they are my safety net as well. Intuitively, everyone seems to have found their own way to help me stay on track.

My mother, who will be ninety next month, is an expert in the art of the gentle reminder. She keeps her own lists of what I should be doing and gives me a subtle nudge if she sees my memory falter. She does it with such finesse that a politician would be impressed.

The kids and grandkids know that telling me something important once is not enough. I need daily phone calls, texts, or emails to refresh my memory about picking them up at school or taking them to practice.

Although nobody gets angry when I come home from the grocery store without the bread or milk, there might be some exasperated eye-rolling when I explain that I forgot to even look at the list.

I once had to mail a package with only fifteen minutes to spare. I jumped in the car and raced straight there only to get out of the car and look around puzzled. I wasn’t at the post office. I was at the grocery store on the other side of town. Daydreaming about what to fix for dinner had apparently determined my route. Rather than obsess about how I could possibly have done that, I decided to make the best of things. I went grocery shopping.

Living with cognitive symptoms of MS can be challenging. It takes planning and teamwork to pull off a day that, for anyone else, would seem routine and uneventful. Failing at that now and then can be frustrating, but I try to keep things in perspective. As long as I haven’t forgotten to feed my family or pick someone up who was waiting for a ride, then I can forgive myself the other slips.

Living with cognitive problems isn’t all bad – in fact, there is an upside. I can read a good book several times and the ending still surprises me. I forget arguments as soon as they are over, so forgiving takes no effort. I could probably plan my own surprise party!

And even though my family might rib me about my memory from time to time, the simple act of everyone doing their part to help out seems to have brought us all closer together. I’ll have to jot a reminder to thank them for that – if I can remember where I put my Post-it Notes.

*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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Losing My Mind Part Two: Overcoming an MS Cognitive Relapse

By Matt Cavallo

In my last bog, I was in the throes of severe MS cognitive relapse. My short term memory was shot. My word association was gone. Everyday situations confused me. I was a danger to myself and those around me and yet I couldn’t comprehend that something was wrong with me. It took an intervention by my wife, Jocelyn, to get me to schedule a neurologist appointment.

The neurologist immediately sent me for MRI studies. Fitting for the holiday season, the contrast dye administered during the studies lit up the active brain lesions on my films like a Christmas tree. It was recommended that I started a course of treatment immediately.

I found myself isolated in an infusion clinic, depressed that MS had caught up to me again. I was scared. This relapse had affected my ability to work. I had missed time with my mobility and vision relapses, so I was afraid that this would be the final straw at my company. I couldn’t afford to lose my job, not around the holidays. Not because of MS. I also needed to get my mind back. In order to do so, I needed a plan. Here is what I did:

  1. Get a doctor’s note: I had my neurologist write a letter to my boss explaining my limitations. I also had the doctor talk with my wife to help convey my situation.
  2. Meet with your boss: I dropped the letter off at the office and had an honest conversation with him about my relapse.
  3. Create task lists: I got a notebook and listed the things I needed to do each day. I would cross things off the lists as I accomplished them.
  4. Leave sticky notes: I put sticky notes around the house that said “TURN OFF”, “CLOSE ME” or “FLUSH”.
  5. Keep your mind active: I found that reading, writing, crossword puzzles, Sudoku’s or any kind of thinking activities helped with my word association, recollection and memory.

It was early January 2007 and I was two months past my cognitive relapse. Things were becoming crystal clear again in my mind. I was back at work and benefited from a slow holiday season. My boss made accommodations for me and kept me on light duty until I was able to perform all the tasks of my fulltime job. I had made some delicious holiday meals without burning down the house and was able to have an intelligible conversation.

Jocelyn comes home from work, smiles and says, “I’m pregnant!” She grabs me and hugs me in the joy of all we had to overcome to conceive. I knew then that I was going to have to work harder than ever because I never knew when MS was going to strike again. So I set goals for myself that I wanted to accomplish and set out to accomplish them, despite the cognitive issues.

I dusted off an incomplete first draft of my memoir and spent hour after hour writing the story of my MS. My wife and I worked on it together. The writing and the conversations I felt helped rebuild my cognition and my mind was coming back with each page I wrote. Finally, the goal of being published happened in June of 2012 on my seventh anniversary of my MS diagnosis.

During that same month, I graduated with my Master’s in Public Health Administration. I had returned back to school to better understand the health care system to help make a difference in the lives of patients like me. I graduated with a 3.98 GPA, which was the highest in the program.

To realize these goals despite the challenges I’ve experienced with MS is incredibly meaningful. I cannot control what MS does to me, but I can do the best I can with what I’ve got. With my Master’s degree and published memoir, I have accomplished things that I never intended on doing prior to MS. Whatever your goals are if you set your mind to it you will be surprised at the results. If I can do it, you can too!

*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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If you have Medicare, get the information you need to know:

Tomorrow, October 15th, is the first day of Medicare Open Enrollment for plan year 2014. The plan that you select now will impact your medical coverage and costs for an entire year. Don’t forget to tune in to our live Webinar tomorrow evening from 8-9PM EST for important information on Medicare Open Enrollment and specific tips for people living with MS.

To register for the Webinar, go to the following link: support.mymsaa.org/aca1

If you cannot attend the live program, don’t worry, you will be able to watch the archive and download the presentation slides from our MSi page after the live program:  http://mymsaa.org/manage-your-ms/videos/.

This year, be prepared. Learn from Medicare experts who can try to help you understand what questions to ask and how to select your best options.

 

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Losing My Mind, Part One: Experiencing an MS Cognitive Relapse

By Matt Cavallo

Back in October of 2006, I was feeling like I had MS beat. My mobility was seemingly back to normal after losing function the previous year due to an acute onset of Transverse Myelitis. It had also been eight months since a bout of Optic Neuritis had claimed the vision in my right eye. Since then, all symptoms had resolved and I was living a normal, symptom free life. Little did I know that I was about to be thrown into the depths of my scariest relapse, losing my mind.

As the calendar approached the holiday season, I started forgetting things. It was simple things at first, like leaving my keys, wallet and phone on the counter as I walked out of the house for work and locking the front door behind me. While everyone shares these experiences, mine were scary because of the lack of cognitive association. I would look at my keys, wallet and phone on the counter, but couldn’t draw the association in my mind that I needed those things to get to work.

On several occasions, I knocked on my neighbor’s door to use their phone to call Jocelyn at work so she could come home and unlock the door for me. Luckily she worked only a mile away, so she was always able to save me. Even though she was having to save me from situations like this more and more often, I didn’t think I was having a problem.

Next my word association started to fail. I would say things like, “Jocelyn did you put the laundry in the dishwasher?” I would look at a common item like a refrigerator and was unable to call it by name. Instead I would say things like, “you know that thing that keeps food cold.” I was also repeating myself over and over. I remember going out to dinner with another couple and asked ten times in ten minutes whether my friend, John, had heard that our mutual friend, Marc, had his baby. My friend John was getting visibly irritated with me, but I was unaware that I had just repeated myself ten times. Jocelyn spoke up to say that I was having one of my MS episodes.

Still, I didn’t think anything was wrong. I didn’t realize that my work was suffering. I was missing deadlines and turning in incoherent reports. My friends and family were concerned because I couldn’t have a regular conversation. It was like I was there in the room with them, but my mind was locked inside my head and my thoughts couldn’t come out.

Then my cognition started to become dangerous. I love to cook, but I was starting meals and forgetting that I left the oven or stove on. There was one time when I was boiling chicken to make soup, left the house and came back later to have the entire house filled with smoke and the smoke alarm blaring. It was this time when Jocelyn confronted me by saying that I needed help before I hurt myself or others.

This hit me hard. Up until this point, MS had affected me physically but I wasn’t ready to cope with a cognitive loss. I also was not able to comprehend the magnitude of what this relapse was doing to my work and personal relationships or how my inability to process things was putting me in harm’s way. When my wife intervened and told me that I needed help, I didn’t want to believe her. I said that I felt fine and while I was a little forgetful, I was still in control of my faculties. She then pointed out that I almost burned the house down while making soup.

As Jocelyn told me about all my symptoms, I broke down. I realized that I was having another MS relapse, only this time I was losing my mind. If I didn’t see my neurologist, I was liable to lose my job, my friends and possibly hurt myself or others. This was a reality I didn’t want to face. This relapse was by far the scariest because I wasn’t fully aware that it was going on and there were no visual signs of disability. I agreed with Jocelyn and set an appointment for the next available time with the neurologist.

Tune in on October 16 for my next blog about how I was able to cope with and overcome this devastating cognitive relapse.

*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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Stay on the Tracks….

Many of us have taken different modes of transportation throughout our lives. Some of these modes have included various types of trains, trolleys, and subway cars,
all of which have one common purpose: to remain on the tracks provided to get to the desired destination safely. This may be an easier task for these transportation vehicles than trying to stay on track during everyday life. Keeping things organized and staying on course can be difficult with life’s unpredictable moments and events. This can be especially true when dealing with an illness like MS, a disease that proves unpredictable itself. So how does one try to stick to the tracks when life comes by and occasionally swipes you off course?

Here are some ideas on how to stay on track while dealing with life’s roadblocks:

  • Make lists! Prioritize your responsibilities and tasks so that you can make adjustments if something throws off the day’s expected course.
  • Write notes or use a tape recorder for the day. This can help you organize and remember things to be done. This can be especially helpful if something else comes up unexpectedly, you have the notes to remind you what needed to be done!
  • Reach out for resources and support. There may be ways to receive help to keep things in order for your routine. Asking others for help or making sure someone else is aware of your anticipated tasks/goals can aid in keeping things on track.

What are some things you do to try and stay on track?
 

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October Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2013 Art Showcase - celebrating the work of artists affected by MS.

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the MSAA Art Showcase submissions.

October 2013 Artist of the Month:
Tammy Jennings – Monterey, California

Ocean Wave by Tammy Jennings - MSAA October Artist of the Month

Ocean Wave

Tammy Jennings - MSAA October Artist of the Month

Oahu

 

 

 

 

 

 

 

 

 

 

 

 

 

 

“My name is Tammy Jennings and I lived in picturesque Monterey, California. I am a 53-year-old, single woman, and I have been living with Multiple Sclerosis since 1996; I was 37. I worked full-time until December 2006 when I had to “retire” as the unpleasant “side-effects” of my MS became too much to handle in a work environment. As a result, I had a lot of free time. So I spent the first few years visiting relatives that I hadn’t been able to see when I was working. My cousin, Joyce Quaglino, was one of those relatives. She can take all the credit for introducing me to the wonderful world of painting. I believe EVERYONE can paint, mainly because it is almost mistake proof. Some of the worst “mistakes” turn out to be the most beautiful paintings! The inspiration for the paintings submitted was the ocean. And Hawaii being one of my favorite places in the world, I took a picture of a sea turtle (Honu in Hawaiian) and painted it when I got home. I hope you enjoy them as much as I enjoyed painting them.

Both paintings are Acrylic & Oil. First I complete the main painting in acrylic, then go back and touch it up with oil to make it “pop” (as my cousin says).”

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Be inspired – please send an online card featuring artwork by MS artist Tammy Jennings and spread awareness of MS and MSAA.

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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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