Psychologist Response:

Roz Kalb, PhD
Senior Programs Consultant, Can Do MS

I’m so glad you asked this question. Support partners – particularly men –  sometimes feel that they should be able to handle it all…that their needs are unimportant compared with those of their loved ones… and that being strong means never asking for help or support. Many men also express the feeling that it is their role to “take care of the family and fix things,” and then feel as though they are failing in the face of MS.

Our message at Can Do MS is that MS is a we disease, not a me disease. This means that the whole family lives with it and feels its weight and demands. We encourage support partners right from the time of diagnosis to get educated about MS and available resources, build a support network, and take time for their own self-care. Doing this helps them feel more prepared and less vulnerable if and when the MS progresses and poses greater challenges.

While you may be correct that your husband needs support more than you do, it’s impossible to force someone to get help until they want it themselves. Talking with a mental health professional by yourself may be the first step to getting your husband to join you. You can discuss ways to talk care of yourself while also taking care of him, get tips for starting difficult conversations, and learn strategies for managing your anger and frustration about this. In addition, I would recommend that you look at some resources yourself and then make them available in your home in case he decides to take a look sometime when you’re not around.

National MS Society

• A Guide for Support Partners – a free brochure to download

Can Do MS

• 4-Part Coaching Program: Finding Support As A Support Partner – registration is open now
• Video series: Focusing on your own wellness
• Podcasts: Hear about the support partner experience
• Tips for Support Partners: Taking Care of Yourself While Caring for Your Loved One – article to download and print
• MS and the Family – article to download and print
• Embracing Carers Webinar Series – Video series focused on serving support partners
• Emotional Support Toolkit

I would also recommend that you seek help from others who know your husband – a close friend or relative. Sometimes, a spouse will hear advice from others more easily than from a partner!

Psychologist Response:

Rosalind Kalb, PhD
Can Do MS Senior Programs Consultant

Your question is very important yet very difficult to respond to without in-person evaluation. But let me start by saying that I know how painful and discouraging the feelings you describe can be. Since you have been working with both a psychiatrist and a psychologist, my thought is they are the people who are most likely to be able to answer your question. What is their explanation for your lingering depression? I think I would ask you to think about the following questions to see if they might guide your future conversations with them.

• Does your depressed mood remain consistent regardless of what’s going on in your life at the time? Has it been only since the start of COVID or has this been a life-long mood state?
• If any of the interventions that have been tried have made even the slightest difference, what changes have you noticed?
• Has grief – the healthy natural grieving process that accompanies the losses and changes (including the diagnosis itself) that MS causes? I find that people easily confuse grief and depression, particularly when their MS-related losses come fast and furiously, with no breaks for healing. Talking about losses and the grieving that goes with them can often provide clarity about what is actually going on with one’s mood.
• Have your mental health providers talked to you about ‘prolonged depression’ or dysthymia, which is a mild to moderate depression that can go on for months or years at a time? Like major depression, it typically responds to a combination of medication and talk therapy, but not always. Along with the healthy grieving process, dysthymia can occur with a disease like MS that is chronic, unpredictable, and stressful.
• Are there times of the year or times of the day when your mood is lowest?
• Are you engaging in regular physical activity and/or exercise?
• How is your sleep?
• How are your nutrition habits?
• Have you been able to maintain important connections with family and friends or are you very isolated?
• We know that depression is a very common symptom of MS. We also know that many people with MS often require higher doses of antidepressant medication than people in the general population. Have you and your psychiatrist looked at varying doses and/or combinations of antidepressants?
• Are you taking any medication – for example, an interferon-beta, that could possibly be contributing to your mood issues?

Each of these questions gives you a way to think about and analyze what may be going on.

If I were working with someone describing this kind of persistent depression, one of the things I would recommend would be taking a mindfulness approach to mood changes over the course of the day/night for a period of 2-4 weeks. Noticing (and perhaps jotting down in a notebook so that you can see trends over time) what you are feeling at different times during the day; looking for possible triggers for small ups and downs; looking for possible relationships between your mood and other MS symptoms, including fatigue and pain.

The goal would be to deliberately focus on your mood in a very open-minded and questioning kind of way, with the ultimate goal of finding answers that will allow you to feel better and focus on more pleasurable aspects of your life.

I wish you the very best. If you have additional questions, please don’t hesitate to get back to CDMS.

Psychologist Response:
Rosalind Kalb, PhD
Can Do MS Senior Programs Consultant

Thank you for this very important question. You’re correct that we invite support partners to all our programs so we can address their concerns as well, but we also welcome people with MS who don’t have a partner. Before I offer your resources to help with the challenges you’re facing, I do want to encourage you to think about other people in your life or community who could offer you help and support – an extended family member, friend, a neighbor, church member, support group member, or fellow participant in Can Do program. Support partners come in many forms and we have seen virtually all of them at our Can Do programs. You may find that different people support you in different ways and in different areas of your life.

In terms of getting reliable, up-to-date information and suggestions for managing your MS, I encourage you to look to MS organizations:

• Can Do Multiple Sclerosis: (cando-ms.org) offers webinars, programs, podcasts, library articles, and other resources about the disease itself as well as interdisciplinary strategies for managing MS in your life.
• National MS Society: (www.nationalMSsociety.org; 1-800-344-4867) offers free, comprehensive information about MS treatment (disease course, relapses, symptoms, rehabilitation, psychosocial issues), as well as free consultations about employment and financial planning. For virtually any question you might have, an MS Navigator can steer you in the right direction. The Society also offers financial assistance and care management services.
• Multiple Sclerosis Association of American (www.MyMSAA.org) offers free programs including safety and mobility equipment products, cooling vests and accessories, an MRI access program, the National MS Society (www.nationalMSsociety.org; 1-800-344-4867), the Multiple Sclerosis Association of America

Most importantly, you are not alone. The MS community is open and welcoming. So please use these resources to help create a support network for yourself. And if you have additional questions, don’t hesitate to come back to Ask The Can Do Team

Psychologist Response:

Rosalind Kalb, PhD
Can Do MS Programs Consultant

I’m glad you asked this very important question. Mood changes – including grief, depression, anxiety, and irritability – are very common in MS. Grief is a normal and natural response to the changes and losses that MS can bring to a person’s life. And the grieving process is an important first step toward adapting to those changes and moving forward with your life. Grief will ebb and flow with the changes you experience but talking with a therapist or counselor and others living with MS can be very helpful if you find yourself immobilized. Many Can Do MS programs offer the opportunity for shared problem-solving and mutual support. And the Can Do MS website has a variety of resources as well as a program on Emotional Resilience (https://www.cando-ms.org/multiple-sclerosis-programs/emotional-resilience) that may be helpful for you.

At least 50 percent of people will experience a major depression at some point in the course of their MS and many more will experience milder depressive symptoms.  It’s impossible to know from your question whether the purposelessness you are feeling is the result of depression, losses or changes in your life related to your relationships, your work, or other factors, or simply not knowing who you are now that MS has changed things for you. It is important to figure out the cause so that you can feel better.

A mental health professional can help you determine the cause of your feelings and suggest management strategies to get you on the path to feeling better. These kinds of feelings are so common that MS experts recommend screening for depression at the time of diagnosis and at least yearly thereafter. You can request screening from your MS care provider and/or go to Mental Health America (https://screening.mhanational.org/) to find free, confidential, online mental health screening tools. You can complete the screening, receive a printout of your results, and share them with your provider to discuss next steps.

Once your mood is stabilized, you will be better able to recapture your sense of purpose. Perhaps you will get back in touch with what it was before MS came into your life or your mood changed. Or, perhaps, you will discover something new that brings back your spark. I wish you the best.

Psychologist Response:

Rosalind Kalb, PhD
Can Do MS Programs Consultant

The relationship between stress and MS is a focus of study, often leading to more questions than answers. Research has shown that the immune system is sensitive to stress in a variety of ways, with some studies suggesting that stress may play a role in MS by triggering or promoting the inflammatory process that is associated with MS exacerbations. However, the jury is still out on this.

Some people find that stress causes their symptoms to flare up. Since removing stress from daily life isn’t possible, the best strategy is to figure out ways to manage those stresses more effectively. The National MS Society’s brochure entitled Taming Stress provides a detailed explanation of what we know about the relationship between stress and MS and offers helpful tips for managing stress in your life, including:

• Simplify your life. Relax a few standards. Let the grass grow. Ask yourself if you want to do a particular task, if it needs to be done perfectly, or not at all.
• Plan ahead in situations that could cause stress. Take a book with you if waiting may be necessary. Make plans for where to meet or call if plans go awry.
• Get extra sleep before family gatherings or important events.
• Learn to say no. You don’t have to do anything if you don’t have the time, energy or desire.
• Make your requests for help as specific as possible: “Would you please help me by….”
• If old interests and activities become more difficult or too time consuming, replace them with new ones that fit your current needs.
• Brainstorm practical solutions to everyday stressors.

Psychologist Response

Ken Nowack, PhD

Can Do MS Programs Consultant (reprinted with permission by the author

Research has found three distinct coping patterns in the face of life stressors: 1) Hot reactors (those who get sick in the battle of stress, challenge and change); 2) Sustainers (those who get sick after the “letdown” with the battle); and 3) The Hardy (those who are resilient and experience stress and challenge free from illness and distress).

Hot Reactors:  About 1 in 5 people can be described as “hot reactors” on the basis of how they react to stress and the effects on their long term health.  Hot reactors are most likely to experience physical illness, job burnout and psychological distress during stressful and challenging projects, assignments and heavy workloads.  Behaviorally they are prone to demonstrating impatience, irritability, frustration with incompetence, mood swings and anger. In our research, these hot reactors are highly correlated with typical measures of Type A behavior characterized by a relentless drive for success as well as cynical mistrust of those around them…Most are high risk for long term cardiovascular disorders including high blood pressure, high cholesterol and heart disease.

Sustainers:   Sustainers are used to prolonged periods of high stress states and are able to suppress fatigue and “get up” for the battle in order to succeed.  Their vulnerability comes not during the battle but after.  By using relaxation strategies to manage the chronic stress response, Sustainers can stay healthy both during stressful times and when things slow down.  By recognizing the signs and symptoms of stress, tension and anxiety when they first appear, Sustainers can begin to utilize a wide range of behavioral and cognitive strategies to avoid the chronic “race horse” condition that is characteristic of most “high flyers.”  These “sustainers” truly do pay the price of being able to hang in during very stressful situations, challenges and times without breaking down physically or emotionally.

The Hardy:  The resilient and hardy  in our research are the ones who experience high levels of stress, work/life unbalance and critical demands but maintain a high level of physical health and psychological well-being.  In our research, these individuals are less likely to report burnout, absenteeism due to illness, anxiety, sleep problems, and depression.

Resilient people appear to maintain and practice specific lifestyle behaviors that become part of his/her daily routine and utilize coping habits that help translate stress into positive challenges that energize, rather than, compromise the immune system and well-being.

We can’t always avoid some chronic (high level of work demands or child care issues) or acute (injury, child illness) stressors but those who are hardy appear to cope and manage them in a manner that minimize negative health outcomes.

Profile of Hardy People

• Experience and report less work and family stress on a daily basis
• Maintain a high level of physical activity/exercise despite travel and work/family demands (e.g., work out at least 3 days a week for 60 minutes).
• Maintain heart healthy eating/nutrition habits (e.g., eat breakfast, avoid convenience food, and manage weight).
• Are non-smokers and drink alcohol in moderation (e.g., no more than 2 alcoholic drinks per day).
• Consistently maintain an adequate level of sleep and practice sound sleep hygiene (e.g., avoid building a sleep debt and get adequate sleep required to avoid being inappropriate sleepy during the day).
• Minimize hostile, impatient and aggressive behaviors towards others that are associated with eliciting the “fight or flight” response.
• Practice some type of daily mental or physical activity that elicits the “relaxation response” (e.g., meditation or yoga) reversing stress activation.
• Cultivate and utilize a strong social and professional support network by spending time with those who are satisfying to be around and avoiding those who are “energy zappers” in our life.
• Possess a hardy outlook on life including viewing change as a challenge, identifying and spending time on his/her passions and develop an external set of attributions for failures.
• Identify and emotionally express strong feelings in writing or verbally to others on a daily basis.
• Stop obsessive thoughts that create tension and explore action plans to resolve the stressor.
• Minimize the use of defeating and perfectionist “self-talk” (e.g., constantly using the words “must” or “always”).
• Actively ruminate and express gratitude for his/her life situation
• Identify and act on his/her signature strengths to maximize career and life satisfaction.

Being resilient isn’t something that we are necessarily born with although there appears to certainly be a genetic predisposition to possessing biological wiring favoring the release of neuropeptide Y and other hormones that may damper the stress response.

Hardy people appear to develop an ongoing commitment to maintain a lifestyle that enables them to balance demands while remaining energized, productive and healthy.

There are many programs and resources on CanDo-MS.org with helpful tips on understanding stress, building resilience, and becoming hardy!

Psychologist Response

Roz Kalb, PhD

Can Do MS Senior Programs Consultant

The best place to start is a conversation with your healthcare provider. I would suggest making a list of the symptoms and changes you have experienced and the ways they have been impacting your daily activities and quality of life. This will help you start the conversation. If you live with a partner, he or she might be able to offer helpful observations of your mood and its impact on daily life.

Your healthcare provider will be able to offer a depression screening or refer you to a mental health professional who can offer a full evaluation. The mental health professional will also be to describe the kind(s) of treatment strategies that would be most helpful for you.

If you would prefer to have a depression screen before you talk with your healthcare professional, you can access a free, confidential, online screening at https://screening.mhanational.org/screening-tools. Once you answer the screening questions, this website gives you a report that you can print and take to your healthcare provider.

If you have difficulty getting a referral to a mental health provider to assist you, you can contact a National MS Society MS Navigator® (1-800-344-4867) to request the names of mental health professionals in your area who are familiar with MS. You are taking an important step toward feeling better and taking charge of your emotional well-being. Life is challenging enough without the added weight and pain of depression. I wish you the best.

For more information about depression in MS, please check out these resources:

• https://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Depression
• https://www.cando-ms.org/multiple-sclerosis-programs/webinar-series/managing-your-mood?q=DEPRESSION

Psychologist Response

Roz Kalb, PhD

Senior Programs Consultant

We are all having to be more cautious during this difficult time.

I think your best strategy is to worry less about whether other people have COVID and focus instead on doing everything you can to follow the guidelines from the Centers for Disease Control for optimizing your own safety. The fact is that the virus spreads in communities because many people have COVID without knowing it. They aren’t lying or hiding it, they simply don’t know they have contracted the virus because they have no symptoms. This means that we need to stay at home except for essential trips out – occasionally to the grocery store, for example – and otherwise isolating ourselves as best we can, washing our hands often and well, and making sure that we clean everything that comes into the house from the outside (our mail, clothing we wear when we go out, and so on. It is normal to be cautious but by taking the best possible care of yourself you can feel more secure.

The Pew Research Center recently published this article suggesting that the coronavirus is indeed impacting our social trust.

Psychologist Response

Gayle R. Lewis, Ph.D., MSCS

Can Do MS Programs Consultant

It’s so difficult to be given a diagnosis that erodes your sense of control over your body and life, and even more so when you feel that the lens through which your partners sees you has changed so drastically- to be made to feel “special” because he takes on daily chores that perhaps you no longer can do yourself vs. feeling “precious” because of the love and connection you have with and for each other.  Hard at this might be, the only way for him to understand this distinction – and to realize what you perceive to be his “focus of the day” – is to communicate with him openly, honestly, and specifically.

I’m not sure what it is that is making you feel like a burden or what is making it challenging for you to communicate your needs and desires.  Maybe you have tried communicating and “it hasn’t worked.” Maybe you are frightened to bring this topic up, as many people can be when they feel vulnerable. It is very important for you and your husband to set aside a dedicated time, where you both feel safe and undistracted, so you both can talk about your concerns –remember, your husband will also have very real and valid concerns that he may (or may not) want to share.  Be ready to listen and understand where he is coming from.  It’s vital that you be honest and that you allow your husband the time to be honest, as well.

Most importantly, this cannot be a one-off situation. Things won’t change by having just one conversation.  Repetition is needed, reminding is needed- but the reminding must be in ways that you both can tolerate and that doesn’t make you feel like you’re nagging or being a burden.  Your needs matter a great deal – make sure YOU know that.  It will come across in the way you let your husband know.

I hope this provides some comfort that you are not alone in your feelings – they are very common.  At the same time, change requires conscious adaptations in the ways you think and act.  All of this is much easier said than done. That’s why I highly recommend couples therapy with a psychologist/counselor experienced in MS.  I would also recommend that you and your husband find support groups to work through some of your issues.

I also recommend continuing to learn as much as you can about communication and the emotional issues inherent with MS – for people living with the condition and support partners.  Can Do MS has some wonderful resources, including:

Webinars

It Takes Two to…Communicate

Together in MS

The Physical and Emotional Aspects of Intimacy in MS

Library Articles

Relationships & Communication

Support is a Two-Way Street

The Physical and Emotional Aspects of Intimacy in MS

Communication is a Two-Way Street

Psychologist Response

Roz Kalb, Ph.D.

Can Do MS Programs Consultant

All of the moods you are expressing – anger, irritability, emotional overwhelm- and the unexplainable and unstable swings in these moods are common, yet underdiagnosed and undertreated, symptoms of MS.

In MS, your immune system attacks your myelin, the protective covering that coats the nerves of your central nervous system (CNS), creating lesions. If lesions form in the areas of the brain or nerve circuits that regulate mood, this could explain these new expressions.  If you have changed your medication regimen, this could also trigger mood swings.

Besides demyelination and reactions to medication, there are inherent challenges related to both aging and MS that can contribute to mood swings.  For example, depression, which is a common cause of mood swings, is closely associated with the normal process of aging for a myriad of reasons, including increased dependency, loss of loved ones, and grieving associated with health conditions, which, in general, become more prevalent and impactful as we age.

For most people with a chronic illness like MS, as well as their support partners, healthy coping over changes and losses is a common challenge.  Beginning with diagnosis, and again with changes in function or everyday activities, people need to grieve over losses they experience before they can move forward with their lives. Normal grieving ebbs and flows with these changes. Depression, on the other hand, is both a symptom of MS and a reaction to the challenges it poses. More than 50% of people with MS will experience a major depression. For somewhat different reasons, support partners are also at risk for depression. Regardless of the cause, depression deserves the attention of your healthcare team. Accurate diagnosis and adequate treatment – ideally consisting of counseling, medication, and exercise – are important.

Anxiety is as common in MS as depression, but generally receives less attention. People with MS and their support partners experience anxiety over the unpredictable impact of MS on their day-to-day lives and the future. Left untreated, anxiety can interfere with planning, problem-solving, and quality of life. Counseling – with medication, if needed – is an effective treatment strategy.

I would highly recommend for you AND your spouse to speak with your healthcare team, especially a mental health professional, who can work together to manage these mood swings.  For more information on mood changes in MS, please read this article and view this webinar that I co-presented with fellow Can Do MS Programs Consultant, Courtney Macksoud.

Psychologist Response

Rosalind Kalb, Ph.D.

Can Do MS Programs Consultant Coordinator

Depression is one of the most common symptoms of MS and also one of the most treatable. Although it can range from mild and episodic to severe and chronic, depression frequently responds well to talk therapy (particularly cognitive behavior therapy) and antidepressant medication. Exercise is also known to enhance mood.

Depression is known to be more common in people with MS (as well as other illnesses that have a similar inflammatory component, e.g. rheumatoid arthritis) than in the general population or people with most other chronic illnesses. Researchers have concluded that depression in people with MS may have multiple causes, including the MS disease process itself, a reaction to the challenges and losses MS can cause, and a family history or genetic predisposition to depressive illness.

Regardless of the cause, however, the treatment recommendations are the same. It is important to be evaluated by a mental health professional who can help you determine the best course of treatment to get you feeling like yourself again. If an antidepressant medication is recommended, keep in mind that it can take up to 4-6 weeks for the medication to provide optimal benefit, and it may take time to find the right dosage for you with the fewest side effects. Your neurologist may be able to refer you to a mental health professional who is experienced in MS. You can also contact the National MS Society (800-344-4867) for a referral.

For more information, please watch the Can Do MS webinar Discover The Invisible: Pain and Depression in MS and Taking Charge of Depression and Mood Changes, for which I also co-authored an article on this topic.  The National MS Society also has some great resources that you may find helpful.

Psychologist Response

Rosalind Kalb, Ph.D.

Can Do MS Programs Consultant Coordinator

Depression, anxiety, fatigue, and altered cognitive and emotional functions are major symptoms of multiple sclerosis.  Compounded, these can create “mood swings” that can impact your self-care, relationships, work, and overall quality of life. With this in mind, it’s important to be aware of the most common mood changes that occur in MS.

For most people with a chronic illness like MS, as well as their support partners, healthy grieving over changes and losses is part of the picture. Beginning with diagnosis, and again with changes in function or everyday activities, people need to grieve over losses they experience before they can move forward with their lives. Normal grieving ebbs and flows with these changes. Depression, on the other hand, is both a symptom of MS and a reaction to the challenges it poses. More than 50% of people with MS will experience a major depression. For somewhat different reasons, support partners are also at risk for depression. Regardless of the cause, depression deserves the attention of your healthcare team. Accurate diagnosis and adequate treatment – ideally consisting of counseling, medication, and exercise – are important.

Mood swings and irritability are also common symptoms of MS, caused by the disease itself and its challenges. These mood changes can easily be confused with depression, in part because people with MS who are depressed may appear more irritable or moody than tearful. Depression, however, does not come and go in the same way, and will generally continue or worsen until adequate treatment is provided.

Anxiety is as common in MS as depression, but generally receives less attention. People with MS and their support partners experience anxiety over the unpredictable impact of MS on their day-to-day lives and the future. Left untreated, anxiety can interfere with planning, problem-solving, and quality of life. Counseling – with medication, if needed – is an effective treatment strategy.

Physical activity and/or exercise are often recommended as adjunct or even primary therapy for depressed mood, anxiety or stress. While controversy remains, the collective evidence suggests that exercise might indeed be helpful for these conditions in the general population. For persons with MS, exercise appears just as likely to promote psychological well-being. It is likely that aerobic or resistance (aka strength) training can be effective and that the exercise need not be intense. It may even be possible to see the positive effect of exercise on mood after only a single exercise session. Finally while most of the research in this area has been on traditional forms of exercise, yoga, tai chi, and even sport climbing have been shown to improve psychological well-being, including mood, fatigue, anxiety, and depression.

Click here to get even more great tips on this topic by viewing our archived webinar on Managing Depression & Mood Changes.  Please also read this article I co-authored, Taking Charge of Depression and Other Mood Changes.  The National MS Society also has some great resources, including Mood Changes.

Knowing that mood swings are a real and common symptom of MS, the first step to recognize when these mood swings occur.  Talk to your family and loved ones, document your moods in a journal or diary, and consult with mental health professionals.  Your healthcare team can then work with you to develop individualized management and coping strategies.

Psychologist Response

Meghan Beier, Ph.D.

Can Do MS Programs Consultant

The short answer is “yes.”  MS patients often present anxiety because of the uncertainty of living with MS, a disease hallmarked by ambiguity.  Data show that 85 percent of people with MS have periods of stable health followed by an episode of worsened symptoms that may or may not fully remit.  Not only are uncontrollable and unforeseeable life change (especially health changes) common causes of anxiety, the changes in the manifestations of anxiety in MS can make it can be hard to diagnose and treat. Being able to cope with this uncertainty is central to managing your anxiety and overall psychological well-being.  I highly recommend acceptance and commitment cognitive therapy. This type of intervention focuses on mindfulness, acceptance, and a commitment to living a life focused on what is important and meaningful—as opposed to living a life based on avoiding or being stuck on challenges, which can also cause or exacerbate anxiety.  Instead, you can identify what is most valuable to you and then uncover a way to obtain that value, despite your MS symptoms.  Because MS affects so many aspects of life, I also recommend you address your anxiety with a multidisciplinary team to allow treatment from many different angles. I often coordinate with psychiatrists, neurologists and physiatrists, as well as physical, speech, and occupational therapists, on a regular basis to provide comprehensive care for patients with MS.

For more information on anxiety and MS, Can Do MS has an extensive library of resources, including two webinars that I co-presented:  Workout Your Worries: Anxiety and Exercise in MS and Discover the Invisible: Pain And Depression in MS, which includes a section on diagnosing and managing anxiety.

In response to your concern about claustrophobia:  Although I am not aware of any research directly linking claustrophobia to MS, MRIs require being still in a tight, enclosed tube.  If you experience discomfort or fear of confined spaces, your MRIs could certainly exasperate those negative feelings.  I would also bring this up with your healthcare team to come up with some solutions.  I would also recommend this first-hand perspective from an MS patient experiencing similar issues in Multiple Sclerosis News Today.

Answer by Roz Kalb, Ph.D–  Clinical Psychologist and Can Do MS Programs Consultant

As a mental health professional, I know that losing the ability to do something you enjoy is always a painful loss. Regardless of one’s disease course, MS can cause symptoms that gradually or suddenly interfere with home, work, and recreational activities. Watching others continue to do them with apparent ease only makes the loss more challenging to manage. The grieving process is not only normal and healthy, it is the first step towards finding satisfying and enjoyable alternatives that may become passions.

It is important not to compare your grieving to other people.  The grieving process is unique to each individual — faster for some and slower for others. Some people need to grieve privately while others benefit from sharing the experience with others or with a counselor. Whatever your personal style, the important thing is to allow yourself this grieving time.

The next step is to allow yourself to consider options – looking at new ways to do the things you love and considering new activities that you might never have tried before. People who are forced to give up activities they love may try an activity they would never have considered in the past and discover a new interest.  This may be “easier said than done.”  My biggest recommendation is to utilize your support system and interdisciplinary health care team, who can work together to help you physically and emotionally.  In particular, physical and occupational therapists are great resources to help you explore your options to stay active.

Answer by Mandy Rohrig, PT, DPT –  Physical Therapist and Can Do MS Programs Consultant

As a physical therapist, I recommend a consultation with a rehabilitation professional – either a physical or occupational therapist – who understands MS. These professionals can help you understand your abilities, encourage exercises to optimize those abilities, and make adaptations to accommodate existing challenges.

If you excelled at cycling or did it competitively, you may feel disappointed in doing an adapted version of that sport.  However, you may discover that you love the new challenge. The first step will be choosing the attitude in which you approach finding alternative activities that may need to be adapted to your physical abilities.

You will be happy to know that the world of cycling has expanded greatly to accommodate everyone!  Three-wheel recumbents, arm or leg propulsion, or electric bicycles may be great options for you. I would recommend looking into electric bicycles because they allow you to pedal when able and use the electric feature when fatigued.  Many areas have group classes and outings so you can feel the social connection that you enjoyed with bicycling.

Exploring other options for adaptive sports may be another strategy.  Nationwide, there are organizations dedicated to providing adaptive sports and recreation, such as golfing, swimming, kayaking, and skiing can be adapted for individuals of varying ability levels.

We would encourage you to explore the following resources:  www.disabledsportsusa.org and the National MS Society’s page about adaptive sports http://www.nationalmssociety.org/Living-Well-With-MS/Work-and-Home/Recreation-and-Travel/Finding-Another-Sport-to-Love.

A willingness to consider adaptations and viewing them as tools to participation is essential.  Many people living MS and other conditions have faced similar challenges and have found ways to continue participating in sports they love.  Perhaps speaking to or reading about others can inspire you.  The founder of Can Do MS, Jimmie Heuga, epitomized this spirit of adaption and modification to allow him to continue enjoying skiing despite his disease progression.  I would recommend reading Jimmie’s story:  https://www.mscando.org/about-can-do-ms/our-mission/founder.

Thank you for your thoughtful post. We hope you find ways to be active and fulfilled.

Answer by Gayle Lewis, Ph.D. – Psychologist and Can Do MS Programs Consultant

I’m very sorry to hear of your challenges. What you’re describing seems to speak both to the depression and fatigue that often accompany MS, as well as the unpredictability of the disease. Having a chronic, unpredictable disease in itself can be very upsetting and overwhelming. Adding low energy, mood shifts, and uncertainty to the equation can understandably create frustration.

First, remind yourself that mood swings are a normal and quite prevalent symptom of MS. Hopefully, understanding that these issues are biological associations to your MS will make you feel less frustrated. Because these mood swings are caused by reactions in your body, they can be treated. YOU CAN BE IN CONTROL OF YOUR MOOD AND FEELINGS, rather than your MS controlling them. Speak to your physician about possible treatment options, including antidepressants or mood stabilizers (depending on what seems more appropriate). Here are some other tips that may help:

• Mediation is a very regulating, calming and energizing activity that, again, YOU are in control of vs. feeling controlled by your MS.
• Acupuncture has been shown to be helpful in dealing with emotional and physical fatigue.
• Speaking to a therapist regularly can be very useful in managing your feelings about your MS and offer ideas how to deal with the disease in ways that are useful to you.
• Add things to your life that allow you to feel empowered…this alone can have a wonderful capacity to bring you energy and strength.

Secondly, I would highly recommend you implement energy management strategies. It’s very difficult to suggest that one conserve energy at times when you actually HAVE energy….but that’s very important to do. Ideally, you’d like to motivate your system to be more in balance…and for YOU to be in charge, rather than your MS ruling your feelings. This might mean incorporating tools into your life that make doing chores easier and less time-consuming, getting help from others, and spreading your tasks out throughout the day. An Occupational Therapist can provide ideas about making tasks less energy-evoking.

Finally, it is important to be aware of your changing feelings, moods, and energy levels. Can Do MS recommends keeping a journal and sharing this with your healthcare team. People with MS and support partners are significantly at risk for depression, mood swings, and anxiety. These symptoms have been noticed as a major feature of MS for over 100 years, but are often overlooked by healthcare professionals. You have to be your best advocate and educate yourself. Can Do MS is a great place to start. They have some wonderful articles and webinars on managing depression and fatigue. The National MS Society also has an extensive library devoted to emotional changes and mood changes.

Clinical Psychologist Response
Rosalind Kalb, PhD
Can Do MS Programs Consultant

I’m so glad that you’ve reached out to Can Do MS for suggestions. You’re dealing with many different stressors, each of which can be a lot to handle. I think that the key to managing so many complicated issues is to make sure that you’re tapping all the resources that are available to help you; no one should feel that she or he has to do this alone.

I would start by thinking about the things that worry you the most, and tackle them one by one. So, for example, if you have financial concerns, make sure that you reach out to get some expert guidance. The National MS Society offers a free consultation with a financial planner, as well as ongoing assistance with questions/concerns. You can get information about this by calling 1-800-344-4867. If you are concerned about long-term care issues, or how to go about finding long-term care resources should the need arise, now is the time to start talking about your priorities and getting information about the available options – beginning with help in the home and extending to day programs, assisted living, as well as nursing homes. None of us make our best decisions when we’re in a crisis, so talking and planning today helps you feel more prepared and less vulnerable whatever the future brings. These are just two examples, but the point is that one good way to relieve stress is to identify the tools and strategies you can use to address the things that worry your most. Knowing that you have plans and strategies in place, can help you stop ruminating about “What if this happens? What if that happens?”

A second critical strategy is to make sure that you are getting the emotional support you need. Staying connected with family and friends is important. Too often, people tend to withdraw from others and become isolated just at the time when those connections are most important. In addition to maintaining your social support network, you may want to consider talking with a counselor with expertise in health and chronic illness issues. Talking through your concerns, identifying options and strategies, and getting support for yourself can help you feel less stressed and more empowered to deal with whatever occurs. By calling that same number at the National MS Society – 1-800-344-4867 – you can get the names of therapists in your area.

The third important strategy is to make sure you’re paying enough attention to your own health and wellness. When dealing with chronic illnesses of various kinds, it’s very easy to become so focused on the medical issues that you neglect your overall well-being. Taking time to do things you enjoy, attending to your medical and dental preventive care needs, taking care of your spiritual needs, and finding whatever stress management techniques work best for you are all essential components of wellness. If you don’t know what activities best relieve your stress, the therapist can help you identify them – whether it’s time with friends, prayer, meditation, a hobby, journaling, or time in your garden, or something else entirely. Building these activities into your life is like physical therapy for your mind – keeping you calmer and more balanced.

And last but certainly not least, exercise is a wonderful stress management technique that is also good for your emotional well-being, cognitive functioning, and overall health. A physical therapist can help you identify an exercise routine that fits your abilities and limitations – whether it’s walking, swimming, or anything other physical activity that appeals to you.

Taking time to attend to your own health and wellness is essential for relieving stress and will also help you be a more effective care partner for your husband. I wish you the very best.

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

Psychologist Response
Deborah Miller, PhD
Can Do MS Programs Consultant

First, the person should explore options for general health, including mental health, insurance through their state or the Federal Insurance Market Place. You can locate this agency online at https://www.healthcare.gov/get-coverage/. On the site, select the state of your residence in the dropdown menu.

We know from literature that the best approach to managing depressions is counseling, medication, and exercise. If an individual is truly locked out of obtaining mental health insurance, there are number of potential options for addressing each of these treatment components. For free/sliding scale counseling services, contact the National Multiple Sclerosis Society at 1-800-FIGHT-MS to determine what counseling services are offered. Other options are to contact the United Way to learn about community mental health agencies that provide free or sliding scale counseling services. Many community mental health agencies and free clinics include physician care, and those doctors evaluate a person’s mental health status and can provide prescriptions for antidepressants and information about pharmaceutical drug assistance programs. Finally, the National Multiple Sclerosis Society has great information in print and online about exercise options for people with MS. To access these resources, please click here.

All of these recommendations require motivation and energy, two commodities that are probably in short supply for someone with MS who has depression. It may be very difficult for someone in that situation to follow through on these recommendations. The first step for such a person is to reach out to a family member or friend, acknowledge the depression, and ask for help. Partnering with a support person is a positive first step in this road to treating depression.