The Neuropsychological Evaluation for People with Multiple Sclerosis: Part II

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.

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The Neuropsychological Evaluation: Allaying Your Fears and Recognizing its Value for the MS Community Part I

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.

 

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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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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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