Choose from 18 different cards to match the personality of everyone on your list. By sending a card from MSAA, you are telling others that you take an interest in MSAA’s mission to serve as a leading resource for the entire MS community, improving lives today through vital services and support:
Boo! It’s October 31st, and MSAA would like to wish the entire MS community a safe and fun-filled Halloween.
For your enjoyment, we’ve created four free e-cards to let your friends and family know you’re thinking about them while also helping to spread awareness of multiple sclerosis and MSAA.
MSAA is also pleased to announce the launch of our new mobile website, allowing users to have on-the-go access to many of the resources currently available on MSAA’s desktop website. The mobile website is another example of how MSAA continues to develop initiatives to improve lives today for the entire MS community.
You can find the mobile version of MSAA’s website at www.mymsaa.org on your iPhone, Android phone, or other smartphone.
By Dr. Lauren Strober
For many individuals, medical testing, especially testing for cognitive changes, may cause fear or anxiety.
How scary of a process is it? For some, undergoing cognitive testing when one has already noticed a decline is very intimidating – many fear that noticing a change is not as scary as confirming there is an actual change. But, like anything, knowledge is best and with MS, knowledge is the best way to tackle a variable, unpredictable disease. Moreover, more often than not, individuals find that they are doing better than they think and that although there are some weaknesses, they also still have their strengths. Again, knowledge is power.
As far as the process itself, a full neuropsychological evaluation can last anywhere from three to five hours and is typically divided over a few days. Cognitive testing can be extremely tiring and that is not just specific to MS. Many patients report needing a nap after! But, most neuropsychologists are aware of this and will offer breaks and other accommodations to make the experience as painless as possible. After the evaluation is completed, you will receive written and verbal feedback as to how you did and what the recommendations are based on your individual cognitive profile. Such feedback and knowledge of one’s abilities and difficulties can be very empowering and assist individuals with taking the right steps in assuring that they can tackle their MS and its symptoms head on!
If you feel that you can benefit from cognitive testing and/or are noticing changes in your thinking, do reach out to your neurologist or a neuropsychologist in your area today.
*Dr. Lauren Strober is a board-eligible clinical neuropsychologist with over a decade of clinical and research experience in MS. She is a Research Scientist at the Kessler Foundation and presently holds a National Institutes of Health (NIH) grant examining the factors most associated with employment status in MS.
By Dr. Lauren Strober
Many individuals with multiple sclerosis (MS) will begin to notice the subtle cognitive changes typically associated with MS. Individuals may report being more forgetful, unable to multitask as well as they used to, or feeling as if their thinking is slowed down. Some may say, “I feel as if I am just not functioning on all four cylinders.” They would be right. In fact, anywhere from 43% to 70% of individuals with MS suffer from some degree of cognitive dysfunction. Most often, it is slowed thinking or problems with memory that are most noticeable and known to have the greatest effect on day-to-day functioning – this can be anything from preparing a meal for the family, doing everyday tasks, or even successfully doing one’s work.
When cognitive symptoms begin to interfere with such tasks and one’s overall quality of life, it is best to consider speaking to your neurologist about undergoing a neuropsychological evaluation. A comprehensive neuropsychological evaluation consists of a battery of cognitive tests assessing language, attention, verbal and visual memory, processing speed/working memory, and executive functions (e.g., planning, organization, reasoning) as well as a full psychological evaluation assessing things like mood, anxiety, sleep, and fatigue. These latter factors are known to also play a large role in cognition and are, fortunately, reversible with effective treatment. For instance, while slowed thinking is common in MS, consistent poor sleep or depression can also lead to cognitive disturbances during the day and further compound existing cognitive disturbances. Thus, proper identification of one’s current cognitive abilities as well as factors that can affect cognition (such as poor sleep) is the first step in taking appropriate steps in managing any cognitive changes associated with MS.
So, when is a neuropsychological evaluation right for you? Again, if you are noticing changes and feeling that they are beginning to impact your daily functioning and quality of life, you should consider having a neuropsychological evaluation. This is particularly important if you are employed and/or are a student and can benefit from some recommendations and strategies as to how best maintain your job or schooling, while working to your strengths and minimizing reliance on your weaknesses. Formal documentation of such cognitive difficulties can also assist with obtaining appropriate accommodations at work or school. Finally, some recommend completing a brief neuropsychological battery such as the Minimal Assessment of Cognitive Functioning in Multiple Sclerosis (MACFIMS) at the onset of one’s illness so that there is a baseline to which patients can better monitor the progression of their illness and cognitive changes associated with such.
If you think neuropsychological testing might be helpful for you, stay tuned for PART II on Wednesday to learn more.
Dr. Lauren Strober is a board-eligible clinical neuropsychologist with over a decade of clinical and research experience in MS. She is a Research Scientist at the Kessler Foundation and presently holds a National Institutes of Health (NIH) grant examining the factors most associated with employment status in MS.
Before I got diagnosed with MS, I would make plans, mark off the ‘Attending’ box on RSVP’s that I received,and I could also just up and do something if there were plans made abruptly, without a second thought.
That’s not the case anymore; I can tell you that much. And I have a feeling I’m not alone on this…
Now, I’m not saying that since I got diagnosed with MS that I don’t want to attend certain events or go out with friends, etc. I still want to do those things; there are just different circumstances now.
I really hate cancelling plans that have been made or not attending something, (like a wedding) that I had replied I would be attending, but my MS isn’t on a “regular schedule.” I can’t tell people, “Well, on Monday, Thursday & Sunday my MS is not cooperative, so I can only do things on Friday & Saturday.” If only it were that easy, right?
So the reasons I don’t like making commitments to plans are because I don’t know how I’m going to be feeling on that day… or at that particular ‘part’ of the day. I know it seems as if I’m “blowing people off,” but that’s not the case. If I said I wanted to attend something, it means I really did. My MS is just not “allowing” me… Kind of like it’s grounding me, like my mom did to me when I was younger.
So now, when people invite me to do something that evening… or the upcoming weekend, I tell them… “I really want to! But I don’t want to make any promises, so let’s see how I’m feeling when the time comes.” For those people who are close to me, they understand my reasoning for saying this… others don’t, and I have to explain, which can be difficult with people who don’t have MS, or who do not have a lot of knowledge of the illness.
My main message on this blog… “Yes, I want to do things…. But sometimes my MS has other ideas that I can’t control!”
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
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.
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.
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:
- 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.
- Meet with your boss: I dropped the letter off at the office and had an honest conversation with him about my relapse.
- 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.
- Leave sticky notes: I put sticky notes around the house that said “TURN OFF”, “CLOSE ME” or “FLUSH”.
- 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/
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.