Psychologist Response:

Roz Kalb, PhD
Senior Programs Consultant, Can Do MS

Thank you for the great question! Let’s talk about first things first. Why are other people finishing your sentences for you? Are you slower to respond than you used to be? Do they seem to be impatient with you? I don’t know whether you’ve tried explaining your cognitive issues to others, but it’s important for them to understand why it takes you longer to formulate your thoughts and put them into words. I would recommend giving them basic information about processing speed and the way that MS can cause it to slow. You can share the National MS Society’s free brochure with them – Managing Cognitive Problems in MS. Being slower doesn’t mean that you don’t have good information and valuable opinions to share. It’s fine for you to ask people to be patient and give you time to respond on your own. When they fill in the gaps, they are assuming they know what you want to say – and they may be totally incorrect!

Regaining confidence in your own opinions is also a priority. Do you have a close friend or family member with whom you could practice putting full thoughts together and then get constructive feedback? Practicing with someone else, or even by yourself, will be very helpful. Think about what you want to say, organize your thoughts say it aloud from start to finish, and then evaluate what you said. Does it make sense to you? Is it what you were thinking and wanted to say? Practice is the only way you’re going to regain the confidence to finish your thoughts.

I would strongly encourage you to consult with a speech/language pathologist. SLPs specialize in helping people with the kinds of difficulties you’re experiencing. An SLP will give personalized and specific tips on how to manage both your difficulty with completing your thoughts and your impulsivity. These issues are common in MS and an SLP with experience in MS will do a complete evaluation and recommend a management plan for you. If you have difficulty finding an SLP in your area, call a National MS Society MS Navigator® and ask for a referral. Since the pandemic, consultations of this kind are also being done virtually, so if you don’t have an SLP in your area, you may be able to do the work remotely.

Psychologist Response:

Roz Kalb, PhD
Senior Programs Consultant, Can Do MS

The word “dementia” covers a lot of territory, but if you are asking whether the mild cognitive impairment from MS increases your likelihood of getting Alzheimer’s disease, the answer is No. They are two separate and unrelated diseases that can both occur in the same person, but are not connected.

At least 65% of people with MS experience some cognitive changes. These changes can occur as a first symptom of MS or begin later. They are, along with fatigue, the primary reason that people with MS leave the workforce early. For this reason, MS experts recommend that people with MS get screened for cognitive changes at the time of diagnosis and every 6 to 12 months thereafter. They also recommend that people be screened for depression because mood changes can have a significant impact on cognitive function. So, for example, if a person who is depressed reports cognitive changes, effective treatment of the depression may help improve the cognitive changes to some degree.

For most people, MS-related cognitive changes remain mild to moderate in severity. With the help of appropriate compensatory strategies and tools, they continue to function well in most of their daily activities. For a small percentage of people, the symptoms can become disabling. The primary cognitive functions that are impacted in MS are: speed of information processing, new learning and memory for recent events, attention and concentration, word-finding, and executive functions including organization, planning and prioritizing, and decision-making, The most effective treatment is cognitive remediation, which includes a combination of computer-based exercises for memory and attention and personalized compensatory strategies that allow a person to function optimally in his or her activities. These compensatory strategies include things like organizational tools, memory aids, tips for finding words, maintaining focus, and conversations, and so on.

Can Do MS has many resources related to cognitive function, such as this Webinar on ways to improve your thinking, attention, and memory.  I’d also recommend that you look at the National MS Society’s brochures on screening recommendations and management strategies.

Psychologist Response:

Roz Kalb, PhD
Senior Programs Consultant, Can Do MS

Thanks very much for your interesting question. Short-term memory, interest, AND attention all interact with one another. We know that problems with new learning and memory are very common in MS. At least 65% of people with MS will experience cognitive changes over the course of their illness. Short-term memory and attentional difficulties are among the most common. In a controlled testing environment (without distractions or interruptions), we know that many people have difficulty with memory tasks. When distractors are built into the testing situation, the memory problems are greater. So, problems with attention can worsen memory problems (if I wasn’t paying attention in the first place, I’m much less likely to remember what I heard.). So what part does interest level play in all this? If someone is telling us a story that is of no interest to us, our attention is likely to wander. We would then have more trouble remembering the story later. If someone tells us a story but we’re listening with one ear to the TV, or thinking about a chore we have to do, we won’t remember the story as well.

So – the simple answer to your question is that lack of interest and reduced attention increases the likelihood that a person won’t remember. However, MS-related problems with new learning and memory also occur even when a person is interested and focused.

Psychologist Response:

Rosalind Kalb, PhD
Can Do MS Programs Consultant

The weight you describe may be due to MS fatigue, emotional distress or depression, or even a poor night’s sleep – all of which are very common in people with MS. Mental fog is also a common symptom of MS cognitive changes, which occur in up to 65% of people with MS. Can Do MS has several archived webinars dealing with fatigue management, cognitive changes in MS, and emotional issues that occur (www.cando-ms.org/multiple-sclerosis-programs/webinar-series/archives).

In the meantime, however, I think the best strategy for managing your energy bank is to pay attention to your “deposits” and “withdrawals” in order to make sure they stay in balance. Typically, when people are having a good day, they push themselves to get a lot done, and then pay for it with fatigue the next day. A more effective strategy is to plan your activities so that you spread them out and incorporate periods of rest between them. The rests don’t have to be long, but they do need to give your mind and body a chance to relax and regroup.

If you wake up in the morning feeling tired and drained, it’s important to figure out why: Did you do too much the day before? Was your sleep disrupted by bathroom trips or discomfort? Are you stressed or anxious? Sometimes managing other MS symptoms like bladder problems, spasticity, pain, sleep disorders, or depression, can significantly reduce your fatigue.

Psychologist Response

Roz Kalb, PhD

Can Do MS Senior Programs Consultant

It is difficult to answer your question without knowing more about the medications you are taking for your pain. You didn’t say whether they are over-the-counter painkillers or prescription pain medicines, or how many you are taking. Virtually all medications have side effects and the combined side effects of two or more medications can be challenging. Many medications prescribed to treat pain can cause sedation and drowsiness, both of which can make it harder to think clearly. I would recommend that you ask the provider who prescribed your medications or your pharmacist whether they impact thinking and memory.

I would also recommend that you ask your healthcare provider for a cognitive screening – or a referral to a psychologist, speech-language pathologist or occupational therapist who can provide that screening. Cognitive changes are extremely common in MS, with more that 65% of people experiencing some cognitive symptoms over the course of the disease. For more information about MS and cognition, I recommend:

• https://cdn.cando-ms.org/images/timeline/March-Webinar_Striving-for-Cognitive-Wellness_LJA.pdf?mtime=20200311154225
• https://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Cognitive-Changes

With a proper diagnosis – which includes identifying your areas of cognitive difficulty as well as your cognitive strengths – a cognitive rehabilitation specialist can give you the tools and strategies you need to function optimally at home and at work. I’m glad you’re taking steps to find out the cause(s) of your “cog-fog.” I wish you the best.

Speech Language Pathologist Response

Pamela H. Miller, MA, CCC-SLP, MSCS

Can Do MS Programs Consultant

Changes in cognitive functioning (typically mild) may occur in ~65% of those with multiple sclerosis. Specific challenges can occur in complex attention, memory, speed of information processing, executive functioning, word retrieval/verbal fluency and visuospatial skills.

To adapt to these changes, I recommend choosing cognitive-language stimulation activities that address your specific areas of challenge. There is no “best thing.” Rather, choose varied stimulation activities that you enjoy and provide opportunities for flexible approaches with new learning/recall. Mix it up because different areas of our brains are responsible for different skills.

Whereas increasing cognitive stimulation activities is beneficial for brain health, it is also important to understand that recommendations include more factors than that.  Scientists have also found that increasing physical activity and applying general wellness principles (i.e., good sleep, diet, social network, medications, general/emotional health) correlate with brain  health. Researchers are studying the above factors with some preliminary positive findings in brain volume, generation of new brain cells, and/or improved nerve connections. So, in addition to increasing cognitive stimulation activities for your brain health, also consider exercising more, getting adequate sleep, eating healthy, staying connected with others,  taking medications for your illnesses, and getting emotional support.

You also asked about Legos and art projects. If you enjoy these creative activities and are physically able, they do stimulate and require visual-motor(eye-hand) skills, attention to detail, visuospatial planning, sequencing, decision-making and mental flexibly when modifying your approach. The same could be said for any “hands on” projects, such as: in the kitchen, on the computer, or in the garden/workshop/craft room.

And yes, conversations are also good, but for different reasons. First, they depend on social interaction, an important factor in overall wellness and brain health. Conversational skills also require good listening, attending, recalling, formulating thoughts, choosing words, maintaining/changing topics, and turn-taking. Another application is to first read articles/books, listen to CDs, or watch the news/shows, then discuss it. Record, rehearse or take notes in preparation. Many people enjoy and benefit from book groups and topic discussions with these strategies.

For more information, Search online for:

1)   Cognitive Changes. https://www.nationalmssociety….

2)   Forging New Pathways in the Brain. www.momentummagazine.com

3)   The Mind Can Benefit from Muscle Activation Too: The Relationship Between Exercise &Cognition. www.mscando.org (Webinar)

4)   A Guide to Cognitive Fitness: www.health.harvard.edu

Also, here a few Can Do MS resources on cognition:

Exercise & Cognition Webinar

Exercise & Cognition: Research Updates Article

Language & Cognition Webinar

Myelin, Movement & the Mind Webinar

Cognitive Rehabilitation in MS

• Speech Language Pathologist ResponsePamela H. Miller, MA, CCC-SLP, MSCS

  Can Do MS Programs Consultant

  Cognitive changes are common in about 65% of those with multiple sclerosis (MS). Although typically mild, persons with MS who experience cognitive issues may have trouble with such skills as complex attention, speed of information processing, executive functions (planning, task completion, decision making), memory, word fluency and visuospatial abilities.

  Age-related cognitive changes have been well-documented in scientific literature. Some cognitive-language abilities, such as vocabulary, have been found to be resilient to a normally aging brain. Other abilities, such as conceptual reasoning, memory, and processing speed, have been found to gradually decline with normal aging.

  So, yes, although there are differences, there can be an overlap of certain cognitive areas affected by both MS and normal aging. However, when undergoing formal cognitive or neuropsychological testing, the normative data used would compare your results with others in your normal age/ gender/educational group. This would help determine what part of your cognitive loss is related to MS vs normal aging.

  Also, here a few Can Do MS resources on cognition:

  Language & Cognition Webinar

  Myelin, Movement & the Mind Webinar

  Cognitive Rehabilitation in MS

  Aging with Multiple Sclerosis Article

  Aging with Multiple Sclerosis Webinar

  Aging with MS Ask the Can Do Team Question

Speech-Language Pathologist Response

Pamela H. Miller, MA, CCC-SLP, MSCS

Can Do MS Programs Consultant

It sounds as if you may be asking about dysarthria, which can be present in approximately 1/3 of those with MS (overall, about 40-50% of people with MS experience speech difficulties).  . It is caused by neuromuscular weakness, slowness, and incoordination of the lips, tongue, soft palate and/or diaphragm, which may interfere with speaking clearly and loudly enough.

The good news is that a person can often be understood more easily by using improved communication strategies. Knowing how common speech problems are with MS, I would suggest to have an honest conversation with your sister, let her know what you are observing, provide some research on its common prevalence in MS (there are a lot of resources on the websites of Can Do MS, the National MS Society, and the MS Association of America), and encourage her to learn and utilize these strategies.  Ultimately, her problems will not get any better (and may perhaps worsen) if she is not made aware and takes steps to learn coping mechanisms.  Make sure this conversation happens in a safe, quiet environment where she will be able to understand you.

It is important that your sister asks her physician for a referral to a speech/language pathologist, who evaluate her specific speech problems and design an individualized therapy program.

Because communication involves both the speaker and the listener(s), it is a good idea to educate others. It can put everyone more at ease and give permission for how the listener may help in the process. Encourage your sister to say, “I have a speech problem because of my MS. Tell me the words you hear. I will fix words you do not understand.”

Speech strategies for your sister to use (or be reminded of) may include:

• Ideally: Quiet room, face to face, 1:1 conversation
• Allow more time to concentrate on speaking clearly
• Open your mouth more and exaggerate articulation
• Fill your lungs and speak more loudly
• Use phrasing: Say just 1-3 words between pauses

Hopefully, these suggestions will help you and your sister, as well as others experiencing the same communication challenges.  For more information, please watch this webinar and read this article on managing speech problems, as well as this article on language challenges.  If you are having trouble initiating this conversation with your sister, I would recommend reaching out to others members of her support system (e.g. a trusted friend) and/or healthcare team. Therapists and other mental health professionals are trained to help develop communication strategies that may be helpful.

Neurologist Response

Randy Schapiro, MD, FAAN

Can Do MS Programs Consultant

In MS, an abnormal immune-mediated response attacks the myelin coating around nerve fibers in the Central Nervous System (CNS).  The CNS is composed of the brain (and its parts) AND the spinal cord.  As the name “multiple” implies, the abnormalities are multiple and present in BOTH the brain and spinal cord.  Thus, MS is a result of a malfunction in multiple areas of the brain and spinal cord.  That is the reason that each person with MS is different from the next and no two people with MS are alike.

Psychologist Response

Pilar Poal, Ph.D.

Can Do MS Programs Consultant

Thank you for your questions.  I can appreciate your frustration with your current symptoms and feeling that pharmacological support is not enough.  These are common symptoms of MS, and they can at times be puzzling and disconcerting.

We know that brain lesions associated with MS can have an impact on cognitive functioning.  While some of the current pharmacological therapies used for MS may slow the progression of cognitive changes, using compensatory strategies can reduce the impact of decreased memory and organizational skills on your daily life. If you have access to a smartphone or computer, there are many free programs that can assist with reminders, lists, logs, calendars, and other tools. However, basic paper planners or boards can also get the job done. My recommendation would be to keep it simple, find one or two tools that work for you that are easy to incorporate into your daily routines.  For more tips on organization and overcoming forgetfulness, check out this Can Do MS webinar and article.

If you feel that your cognitive symptoms are worsening and significantly interfering with your daily life, you could discuss with your doctor the option of getting a referral for neuropsychological testing and cognitive rehabilitation.

Decreased coordination, which you describe as clumsiness, is a common symptom of MS and can be related to other MS symptoms, such as decreased balance, muscle weakness, spasticity, or fatigue. It may help to explore which ones are contributing the most to the decrease in your coordination.  Then, you can develop a plan with a physical therapist to specifically target those areas. Note, however, that fatigue is likely to amplify these and other MS symptoms, so learning to pace yourself throughout the day and make adjustments when you identify the beginning signs of fatigue can be a helpful strategy.

Exercise may also help with your “clumsiness.”  Read this Can Do MS article for more information on the benefits of exercise on balance and coordination.

In regard to your concerns regarding sex drive, this is also a common consequence of MS and is associated with many factors. Sexual functioning can at times be directly affected by the neurological changes caused by MS. Other times, some MS symptoms such as spasticity, restricted movement, changes in sensation, bladder functioning, and fatigue can have an impact on sexual functioning.  In addition, body-image, relationship concerns, and expectations can also affect sexual drive. A good place to start would be to communicate with your partner regarding your concerns about your decreased sexual desire and to enlist his/her support so that you can address them together. Exploring the impact that physical changes, relationship roles, fears, and expectations may be having on your sexual drive can help clarify what is happening and identify possible ways to address your concerns.  In addition, it is important that you share with your partner what type of physical touch is pleasurable and what feels uncomfortable or painful.

Another recommendation would be to broaden the way you think about physical intimacy with your partner so that you can have more ways of being physically close to each other. Explore together what changes may help you get in touch with the more sensual parts of yourself and possible situational factors that may increase your sexual interest (i.e. location, time of the day, leading up activities, etc.) While fatigue and other physical symptoms of MS may, at times, affect your sexual desire, sharing your needs with each other and exploring new ways to be emotionally and physically intimate will promote closeness in your relationship and minimize the chances that your decreased sexual desire will create feelings of distance or resentment between you and your partner.

For more insights, please watch this Can Do MS webinar, “Keeping Your Relationship Alive: The Physical and Emotional Aspects of Intimacy in MS.”

Answer by Meghan Beier, Ph.D – Neuropsychologist and Can Do MS Programs Consultant

The short answer is that any exercise of any duration, especially when it leads to improved physical fitness, is likely to have a positive impact on cognitive functioning. Although exercise might improve multiple areas of cognition, the area that seems most impacted is executive functioning. I think of executive functioning as the CEO or coach of the brain. This area helps us organize, plan multi-step activities, initiate behaviors, or inhibit emotions/behaviors we don’t want. Both aerobic- and strength- based exercises have been associated with improvements in executive functioning. There are both behavioral and physiological theories as to why we see improvements in this area.

Physiologically, there is some suggestion that exercise might increase electrophysiologic activity and oxygenated blood in the prefrontal cortex, leading to improved executive functioning. Exercise may also result in increases in dopamine transport within the fronto-striatal network or central executive network.

Behaviorally, engaging in and maintaining an exercise program takes planning, initiation, and self-control. Therefore, it is possible that people who stick with an exercise program and make the most gains already had some strengths in executive functioning. Conversely, exercises themselves are tasks that require attention and inhibitory control. For example, the act of walking itself may be exercising executive skills. The brain has to coordinate both legs, placement of feet, and what muscles to activate or relax in a specific order. Thus, coordinating physical movement, in and of itself, can exercise this area of the brain, in addition to improving strength or fitness.

To learn more about the relationships between exercise and cognition, check out this great webinar by fellow Can Do MS Programs Consultant Mandy Rohrig, PT, DPT, and Robert Motl, Ph.D. For some resources on “brain exercises,” check out this article by Can Do MS Programs Consultant Pat Kennedy, RN, CNP, MSCN. This article on multiplesclerosis.net also provides suggestions for exercising your brainpower.

Registered Nurse Response
Jennifer Smrtka, ANP-BC, MSCN
Can Do MS Programs Consultant

Unfortunately, flu-like symptoms are common potential side effects with all interferon beta therapies used in MS. But there are some important tips that one can utilize to lessen the likelihood of losing days due to these symptoms.

First, make sure to be hydrated; especially on days of injections and “MS Monster days”, this can decrease flu like symptoms and their severity. Secondly, it may be helpful to take acetaminophen (Tylenol®), ibuprofen (Advil®), or naproxen sodium (Aleve®) an hour before injecting (at bedtime) and then re-dose again in the morning after breakfast. It may be helpful to take these medications for 24 hours after the injection. Thirdly, it may be helpful to take the injection in the evening before bedtime in an attempt to sleep through some of the side effects. Lastly, if you continue to struggle with your injections, speak to your neurologist and let him/her know your troubles. There are many options available and there may be a better option for you.

Emotionally, sleep deprivation can lead to feeling overwhelmed and “scatter brain”, as well as having difficulties with concentration, and coping strategies. It is hard to stay organized when you are exhausted and not feeling well. Perhaps using some organizational tools maybe helpful- such as a smart-phone to set reminders and alarms, or a personal organizer with a calendar. A centrally located “family calendar” may also be helpful with your husband and son’s assistance to complete for upcoming events. Weekly or even daily family staff meetings over dinner to communicate and establish what needs to be done on a day to day basis can also be helpful and share the burden of family tasks. There are websites that also have organizational tools for families.

Check out: www.parents.com; www.grocerylists.org; www.chorebuster.com; www.cozi.com