Frequently Asked Questions


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

Can Do MS

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

Children of a parent with MS are impacted by the disease even if those children are grown and living on their own. Typically, adult children worry about several things:

  • What their parent’s experience with the disease is likely to be over time
  • What kinds of assistance or support they might need now and in the future
  • How to balance their parent’s needs with the needs of their partner, children, career (the “sandwich generation” dilemma)
  • What the risks might be for themselves and their children of developing MS

Parents with MS, in turn have concerns of their own:

  • How to ask for help and support from their children without overburdening them
  • How to communicate openly and honestly about the MS without causing undue worry or alarm
  • How to create realistic expectations around what they can or can’t do to help their children and grandchildren

What we have learned at our programs from parents who bring their child(ren) as a support partner(s), is that honest, open conversation is the most effective way to deal with these concerns – and good communication starts with good information:

  • What MS is
  • What visible and invisible symptoms is the parent experiencing (because each person’s MS is different)
  • What changes might happen over time
  • How the MS and symptoms are being treated
  • How the MS is impacting daily life.

Up-to-date, accurate information is available from many credible sources.

  • Can Do Multiple Sclerosis ( (webinars, articles, multi-day programs for people with MS and support partners, Ask the Can Do Team, where anyone can post a question that will be answered by the Can Do team of healthcare professionals)
  • National MS Society ( (MS Navigators (1-800-344-4867) who provide information, support, and referrals for individuals with MS and their family members), a comprehensive library of articles and free brochures covering MS symptoms, treatments, family issues, employment, and many other topics, including the genetics of MS)

Families tend to have different ways of handling health information. Some parents and children agree that they want to know about any health concerns a family member might be having. Other families share information only about emergencies. It’s good to start by deciding together how much information sharing about health issues, in general, and MS, in particular meets everyone needs

In terms of how adult children can best help their parents, the conversation starts with clear, specific messages from the parent about what kinds of help and/or support are needed. Since MS is very unpredictable – over the course of a day and from day to day or week to week – the parent’s needs will change as well. It is up to the parent to be specific about the kinds of help that are and are not needed. The children should not have to guess. Children who live close by can offer various kinds of help that children living in a different part of the country cannot – so everyone needs to be realistic about that. While a child in the neighborhood can help with transportation, meals, household projects, the child who lives far away might be able to focus on online searches for information, local resources, and helpful tools, In other words, having realistic expectations from the outset can help everyone.

With a progressive, unpredictable disease like MS, it’s also important for parents and their adult children to talk openly about the future. Helpful topics include financial planning, long-term care options in the event of significant disability, possible relocation to be closer to the children, driving safety in the event that MS symptoms interfere.

And lastly, I think that parents and children need to be able to communicate about their respective needs, roles, and responsibilities. While we all might want to be able to help and support each other to the nth degree, that isn’t really realistic. Parents may no longer be able to offer the same assistance (babysitting, hosting large family gatherings, financial assistance are a few things that come to mind). And children with their own families and careers may not be as available as they would like to be. So be clear about what is and isn’t possible, brainstorm together, and come up with solutions that work for everyone.

If any of these conversations are too difficult or stressful, a counselor or therapist who is familiar with MS can help families get started. The National MS Society (1-800-344-4867) offers referrals to mental health professionals.

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: ( 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: (; 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 ( offers free programs including safety and mobility equipment products, cooling vests and accessories, an MRI access program, the National MS Society (; 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

This is a very important question because you’re trying to balance your own needs and coping strategies with those of other people who likely have their own styles of coping. In other words, one size won’t fit all!

  • Keep in mind that you’re in the driver’s seat – experiencing your symptoms and changes, making decisions about your treatment, working with your healthcare providers to manage the disease and stay as active, productive, and independent as you can. Each time you overcome a new challenge or find different ways to do things that are important to you, you feel more resilient and more prepared to take on the next challenge.
  • Your loved ones are riding in the back seat, wondering and worrying about where you’re going, how you’re going to get there, and what roadblocks or detours are going to stand in your way.
  • Open, ongoing communication is the key.
    • Reassure your family members that you are getting good care and taking steps to manage your disease course and symptoms.
    • Include your spouse/partner in your healthcare visits and make sure that their questions are answered.
    • Be clear about when you need help and when you don’t. No matter how much your loved ones love you, they can’t read your mind – so don’t make them guess. And when you do need help of some kind, be specific so they know how best to assist you.
    • You can help your loved ones increase their own resilience to the ups and downs of your MS by sharing how you have grown and learned through your experiences with MS. When you experience a victory, share your success and let them know how that feels for you. Let them celebrate with you so that your strength feeds theirs. When you experience a setback, let them know how you plan to manage it. This will help reduce their need to “fix it” or “rescue” you.

Psychologist Response:

Rosalind Kalb, PhD
Can Do MS Programs Consultant

Interactions that offer connection, support, stimulation, new learning, fun, or a feeling of engagement are beneficial regardless of how they occur. During the pandemic, people have been forced to connect in ways they might never have considered before, and many of us have found comfort, enjoyment, and connectedness in doing so.

The obvious benefit of in-person interactions is that people have the opportunity to touch and hug, which for many people is a key part of connecting with others. The benefits of virtual gatherings for people who are shy or uncomfortable in group gatherings are also clear. For these people, connecting from the comfort of their own home often feels safer and more secure, with the result that they interact more freely and openly. Ideally, we each find ways of interacting that feel the best and offer us opportunities for connecting with the important people in our lives.

Psychologist Response:

Rosalind Kalb, PhD
Can Do MS Programs Consultant

The starting point for helping your adult child with MS is an honest conversation. Together, you need to talk about what your child wants and needs from you in the way of assistance and support, as well as what you need from your child in order to understand the MS and deal with your worries and fears about your child’s well-being.

These needs will change over time. For example, at the time of diagnosis, your adult child may need you to be there to offer advice, assistance, support, financial help, detective work into resources, while at another time your child may feel able to handle things very independently. At the beginning, you may feel the need to see and/or talk with your child very often to see how everything is going, while later on you may not be as worried from day-to-day or week-to-week. If your adult child has a life partner, your role will likely be very different than if your child is single or living at home with you.

If and when the MS progresses, you will probably want to have more conversations about how you can best provide support and assistance now and in the future – emotionally, financially, or with hands-on assistance.  Adults with MS often have concerns about their aging parents – worrying about how they can assist their parents when they, themselves, have so many needs. This becomes a balancing act, where parent(s) and child talk about how they can best help and support each other in optimal ways.

Under some circumstances, an adult child with MS needs to return to their parents’ home. This is a challenging situation for everyone. And, again, open and honest conversations are the best way to deal with this transition. Adults returning to their parents’ home after living independently often find it very difficult to give up their independent living space and move back home. Parents who are enjoying their empty nest need to readjust to having a child in the home again. The conversations need to be about how best to renegotiate the parent-child relationship in ways that work for everyone. A therapist or counselor can help get these conversations started if parents and child are having difficulty.

In terms of special care needs a person with MS might have if the disease becomes severely disabling, a consultation with an elder care attorney can offer very helpful advice. Parents and their adult child with MS also have financial needs that need to be considered and this type of attorney can offer advice about how to protect everyone involved. Specifically, the goal is to ensure that the person with MS is planning for the unpredictable future, financially and otherwise. Parents can structure their will and also create various types of trusts to assist their child with MS.

  • Psychologist Response

    Roz Kalb, PhD

    Can Do MS Senior Programs Consultant

    Taking care of yourself is not selfish – in fact it’s an essential part of being a good care partner. Just as the flight attendant reminds us to put on our own oxygen mask first before helping another person, care partners need to keep themselves healthy and rested in order to provide optimal care and support. Try to build time into your day for adequate sleep and rest, physical activity or exercise, and healthy meals.

    This may be challenging depending on your husband’s needs, but perhaps you can ask a friend or relative to be on call for your husband while you take some time for these important activities. You may also find that you need support and comfort for yourself, so don’t hesitate to reach out to your support network when you need a chat or a hug. If you find yourself feeling stressed and anxious, make use of strategies that have provided stress relief in the past – perhaps listening to music, keeping a journal, taking time for prayer or meditation. Each person’s needs are different, as are the strategies that help a person feel better.

    You mentioned wanting to do the best for your husband. My other recommendation is to have a conversation before the surgery about how you can best help and support him while also taking care of yourself. As his needs change over the next days and week, be sure to check in with one another to see how you’re each doing and to tweak your help and assistance as needed. I hope the surgery goes well and that your husband recovers as quickly as possible.

    Can Do MS has several resources on its website devoted to help us care for our support partners, including this webinar on Caring for Carers.

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 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:

Psychologist Response

Roz Kalb, PhD – Senior Programs Consultant

I think this may be a question that lots of families are dealing with right now. We all miss one another and feel anxious about our loved ones’ well-being. Having two grown children myself, I know that we miss being able to be together and take care of each other. However, the guidelines for health and safety right now are very clear – the way we can protect ourselves and others most effectively is by staying put where we are so that we don’t inadvertently carry the virus from place to place.


Since the elderly seem to be the most vulnerable to COVID-19, it is particularly important for those of us who are over 60 to remain in our homes without visits from others. I would urge you and your son to connect virtually through one of the many available platforms, such as FaceTime, Zoom, or Skype. That will allow your son to see and talk with you, both to confirm that you are OK and to get the comfort of talking with his mother during this time of crisis. You can support each other and feeling very connected, even if it’s virtual. Setting up a regular time to connect can be fun and comforting for both of you.


This may be difficult for your son to hear, so you’ll want to make sure you are communicating clearly and empathetically.  The Can Do MS Coronavirus and You has some Communication Tips, and this webinar and library article focuses on communicating with family.

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

Linda Mona, PhD

Inclusivity Consulting

Any time we use assistance for personal for daily activities (e.g., bowel and bladder care), we can feel detached from our bodies at times.  We never dream that we would ever have someone assisting with those tasks.  And, yet, that is what some of us are called to do.  If your husband is the one assisting you with those tasks, it can be even more difficult.

It is best to find ways to clearly separate daily activity tasks from sexual intimacy.  For example,  if your husband assists with bowel and bladder care, leave a good chunk of time between those activities and sexual intimacy so that you are giving time for your roles to change.

Talk to him to see what he might be open to and try and create some special time together.  Some people carve out a certain time every day (e.g., 7pm every other day).  This could be a time to cut off electronics, hold hands, and talk. It only has to be 10 mins if you like.

The idea is that you need to prioritize  time together to build up both emotional and physical intimacy.  If you have an indwelling catheter, you can hold it aside during sexual activity or have sex in between changing the catheter if that is feasible.

Talk to your doctor (if you are comfortable) about what might be the best way to handle this situation.  Sex and intimacy helps all of us feel connected to life.  You deserve to fight for it!  Eye gazing, hand holding, kissing, and anything else you enjoy can be explored again.  Sex will be different living with disability but it does not necessarily mean it will be worse.

Psychologist Response
David Rintell, EdD
Can Do MS Programs Consultant

Changes in sensation is a common symptom of MS.  A person with MS who is experiencing these changes in sensation should begin by letting their partner know that these changes are happening.  Educate your partner and let them know that these changes are unpredictable.

You and your partner can work out a short-hand so you can let him know that “it is not a good time” for intimacy, to avoid unclear expectations. Remind your partner what you can do, which might include cuddling, enjoying activities or movies together, and other ways of feeling close. Intimacy really means closeness and honesty, and you can always be intimate in that way. When you are intimate, let your partner know if his touch is not feeling good for you. It may be what often is pleasurable at times, may be uncomfortable or even painful.

Your second step should be to schedule a meeting with your health care provider. Your HCP can look for biological reasons why you might have a loss of desire, which could include testing for hormone levels, and find out more about the changes in sensation you are experiencing. Your neurologist, urologist, or PCP may be able to offer some insights and perhaps a helpful intervention. Ask for a referral to a mental health professional who works with people experiencing challenges in sex and intimacy.

Third, some things you and your partner can do:

  1. Desire is always dependent on feelings of closeness, comfort, trust and affection. You and your partner can take more time to express these positive emotions toward each other. Desire sometimes arises from emotional feelings, not just physical feelings.
  2. Explore the areas where you do have sensation, and see if asking your partner to touch you in the right way in those areas helps you to become aroused and interested. An activity called “Body Mapping” or “Sensate Focus” might help. This activity is done when you and your partner can take time when there is no one else around, and with the agreement not to engage in intercourse as part of the activity. One of you spends time touching different areas of the body, and the partner being touched gives feedback about how the touch feels in that area, and whether the touch should be softer, lighter, harder, etc. Then switch and do the same for your partner.
  3. Suggest to your partner that when intercourse does not feel like an option, that you cuddle, talk, and enjoy each other’s presence. There is no couple who could not use more time cuddling.
  4. There are some good ways to increase sensation. There are new products which are lubricants which increase sensation. There are even products consisting of two different lubricants, one for each partner. When these lubricants meet, they react to each other and create more sensation for the users. There are many products, and if one doesn’t work, it might be worthwhile to try another. One example is K-Y Yours and Mine – women and men utilize vibrators which increase sensation. There are many, many choices here. A good, reliable, and discreet source of vibrators are:
  • – A website which offers products for sale and a great education section, including a section on Sexuality and Disability, offering items for people with limited mobility and ergonomically designed sex toys. The site is very positive, appropriate, and is not porn. They offer $5.00 off for new customers. Enter the code: WELCMYP.
  • – Another positive sexuality online store, many toys plus much useful information.
  • – Sponsored by Columbia University, Frank answers about Sex, relationships, nutrition, and health
  1. Finally, experiment! Find out what else works. Does heat increase sensation? Cold? Does watching a chick flick, a sexy movie, or reading increase your interest and desire? If you find something helpful, use it. If you find something that makes the problem worse, avoid it.

Most people find solutions or work-arounds to sexual problems related to MS. We hope you will too.

For further information about sexuality in MS, download the excellent edition of MS in Focus from the Multiple Sclerosis International Federation,, at

Nurse Practitioner Response

Megan R. Weigel, DNP, ARNP-C, MSCN

Can Do MS Programs Consultant

Over the past few years, some of the leading researchers in the field of MS have been trying to answer this very question, and so far the results are conflicting.  In 2015, a study in JAMA Neurology reported that women who EXCLUSIVELY breastfed for at least 2 months had a lesser risk of relapse in the first 6 months following delivery than women who breast and formula fed, or women who did not breastfeed at all.  This study found that, once the mother stopped breastfeeding, the relapse rates return to expected.  Here is a summary of that study:

I tell patients that exclusively breastfeeding means that you cannot even think about formula or look at it in the grocery store!  Regarding amenorrhea (absence of a menstrual period), exclusive breastfeeding causes a woman to stop menstruating to a certain point.  It is the hormonal changes that are likely protective.  This is a great review article:

Bottom line is that the risks of postpartum relapses are much more related to the severity of your disease before pregnancy.  If you were having frequent relapses even on disease modifying therapy, then you are more likely to relapse.  If you have relapsing MS and your disease was quiet on disease modifying therapy prior to pregnancy, you are less likely to relapse.  I recommend breastfeeding to women with controlled MS, and this often involves a long and honest talk about their desire and philosophy of child-rearing.  It is very important to have a pregnancy and post-delivery plan.  This includes discussing breastfeeding, restarting disease modifying therapy, and need (if any) for immediate postpartum therapies such as pulse steroids or IVIg.  This is all based on the individual’s history of MS, and can’t be blanketed to a group.

For more information, the National MS Society has a website to News related to breastfeeding and MS:

Psychologist Response

Gayle Lewis, Ph.D., MSCS

Can Do MS Programs Consultant

For many reasons, MS can be stressful in a relationship. Whether or not this stress actually contributes to more divorces is unknown.  While some studies show that over 70% of MS marriages end in divorce, it seems that the rate is more on par with the 50% divorce rate for the general population.  Renowned MS psychologist and fellow Can Do MS Programs Consultant  Roz Kalb believes “the divorce rate for MS couples may actually be lower due to a variety of reasons.”

In terms of marriage counseling, it can be successful in strengthening relationships, but only if both partners come into counseling on the same page of wanting to preserve the marriage.  If, on the other hand, each partner has different aims about whether or not to preserve the marriage, couples counseling alone cannot and does not have the power to reconnect the couple.

My biggest suggestions would be to communicate openly with your partner and to reach out to a mental health professional with experience working with couples living with MS (the National MS Society is the best resource to finding local support).  If it is needed, there are family law attorneys that specialize in MS and other chronic conditions.

There are also many resources to understand and cope with the unique and very real impact that MS can have on a relationship.  In addition to Roz’s book, “MS: A Guide for Families,” take a look at the following resources:

“Relationships & Communication” Can Do MS Article

“Relationships and Building Satisfying Partnerships”  Can Do MS Webinar

“Multiple Sclerosis and Divorce”  MS Connection

“Relationships” National MS Society Resources

Psychologist Response

Roz Kalb, PhD

Can Do MS Programs Consultant Coordinator

I think your instinct is correct — your worries about your son’s diagnosis may be causing you to move a bit too fast. When young adults receive a diagnosis like this, they need time to react, deal with the shock, and grieve over this change in their lives.

Their initial reaction may be that “this changes everything” –  including their present situation, as well as all of their dreams and plans for the future. Or, they may react in the opposite way – vowing not to let the MS interfere with anything. Of course, the realities of MS are somewhere in between. But each person needs to come to that realization in his or her own way. Not knowing your son at all, it’s impossible for me to say what might be best for him. Some people cope by jumping in with both feet, trying to do everything and manage everything at once.  This may be closer to your style than his.  Others take more time to figure out how best to move ahead, which may be closer to his style than yours.

As parents, we want to protect and care for our children no matter how old they are. We want to try and make things better for them just the way we did when they were small. Ultimately, however, your son needs to find his own way with his new diagnosis, even if it’s a different way than you would choose. When he’s ready, I hope that he will learn about the disease from his healthcare providers (especially a neurologist with expertise in MS) and credible sources like Can Do MS ( and the National MS Society (, while starting treatment with one of the approved disease-modifying therapies as quickly as possible. There is now ample evidence that the sooner a person starts treatment, the more effective it is in reducing relapses, lesions on MRI and disease progression. If your son needs help finding a neurologist the National MS Society (1-800-344-4867) can help him with referrals.

All of this may take him a bit of time.

We know that overall wellness – including a healthy, balanced diet, exercise, and stress management – are important for all of us, including people with MS, but your son may need time to come to these decisions on his own. In the meantime, I would recommend that you let him know that you are there to support him and to help in whatever way he needs. Let him be your guide.  A psychologist that specializes in MS can also be a valuable outlet for parents in your situation by helping you develop strategies for your own grieving, coping, and communicating.

If he is open and ready to hear about helpful resources for people with a recent diagnosis, you can let him know about the following:

Knowledge is Power — a learn-at-home series for those who are newly-diagnosis ( that covers topics including treatment, working with your healthcare team, employment, relationships, staying health, etc.

GPS for Your MS — a webinar from Can Do MS (

MS Path 2 Care — a series presented by Can Do MS in partnership with Sanofi-Genzyme and the Society for Participatory Medicine (

Sometimes it is easier to get information and recommendations from someone other than one’s parent! Please know that Can Do MS and the National MS Society also exist to support you — so please don’t hesitate to come back to us with more questions, or contact one of the Society’s MS Navigators at 1-800-344-4867.

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:


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

Clinical Psychologist Response

Gayle Lewis, Ph.D., MSCS

Can Do MS Programs Consultant


Feeling that the people who support and care for you, in fact, see you as someone who, for lack of better terms, is a pain in the ass in their respective lives is certainly an awful feeling and an all-too-common burden for people living with MS and many other conditions.   However, I would suggest that the actual burden you are creating is more profound from your subjective perception than it actually is to them.

My first question – do you have any actual evidence that your husband and family see you and experience you as a burden? Has anyone actually said so or alluded to this feeling?  The most direct answer to your question on dealing with the guilt is to communicate your feelings honestly and openly to your family, and provide them with the opportunity to honestly and openly communicate their feelings with you.  A therapist can help facilitate this dialogue.

Yes, dealing with MS as the patient IS a big responsibility, accompanied by many daily issues to be dealt with, on your own and vis-à-vis the assistance of others.

And, yes, the stress of daily assistance can take a physical and psychological toll on the caregiver, causing caregiver burden.  Caregivers are often reluctant to ease their own burden and take care of themselves.  However, early recognition of caregiver burden can help you and your loved ones determine appropriate interventions.  Ultimately, your family loves you and they are invested in caring for each other.  Focusing on “who deserves or doesn’t deserve” being part of this team is a zero-sum game.  Instead, you can focus on the positives in the lives who have lead together and will continue to lead in the future.  The National MS Society has actually found that MS can draw partners more closely together as they provide deeply satisfying care and meet the challenges of caring for a loved one with a chronic illness.

Without being too much of a sideline therapist who knows nothing about you except the worry I feel in your question, could it be that you are projecting your own self-hate and anger about what MS has taken away from you and complicated your life onto your husband and family members? In other words, are you assuming that they all feel taxed by your MS and its progression because you feel that way yourself?

Let’s say this is the case….and/or that your loved ones DO feel burdened and overwhelmed by your MS…I would recommend individual therapy for both you and your husband, as well as couple’s therapy for the two of you to talk about these things in a safe space.  Group therapy would also be helpful to share with others going through the same concerns/experiences and learn from their own helpful insights.

Again, this is cursory guidance as your situation requires individualized attention from a mental health professional.  However, you have taken a great first step by recognizing your concerns and seeking information to cope.  I hope you will continue to use Can Do MS as a resource.  For more information, I would suggest watching this webinar on supporting family members and this webinar on relationship issues in MS.  There is also a great video on coping and managing complex care needs in advanced MS.

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.”

Physical Therapist
Amanda Rohrig, PT, DPT

Can Do MS Programs Consultant

Serving as a caregiver/support person for someone you love can be a truly joyful blessing that can offer many benefits to both parties. It is also a responsibility that, at times, have heavy tolls- physically, emotionally, and mentally- even though you feel proud of the role you play in your loved one’s life. You may find yourself experiencing a wide range of emotions as you adapt to the day-to day variability of this unpredictable disease. Knowing when to help and how to help when changes occur can be challenging. Despite your questions and concerns, please remember your attention and care make a huge difference!

First, I would recommend having an open conversation with the person for whom you are caring. Confirm that she is experiencing what you are observing. Then, potentially together, consult with her health care team (especially a physician or MS nurse) to determine if there are any appropriate and/or necessary changes that need to occur with the medical management of her MS, as well as a request for a prescription for physical therapy. A consultation with a physical therapist who understands MS can help to identify abilities and areas of improvements. For example, there may be alternative bracing or mobility devices in combination with specific exercises that may be helpful. Often, implementing some key fatigue management strategies or environmental changes can help, too. Most importantly, identifying when to help versus when to empower the person with MS to do an activity or exercise independently is key to strengthening mobility and for both of you to live well with MS.

In conclusion, seek that consultation with a physical therapist to help both of you learn to optimize exercise and mobility. In the meantime, consider education and investigation into some of the online resources from Can Do MS (there are some excellent webinars and articles pertaining to exercise, flexibility, and mobility are available on the CDMS website, and the National MS Society ( I would encourage you to explore the Stretching for People with MS as well as the Stretching with a Helper for People with MS manuals from the National MS Society. These 2 resources would be appropriate to bring along to a physical therapy session. With the help of a PT, you and your loved one can identify and prioritize those that may be appropriate for your situation. Thank you for your question and best wishes for health, wellness, and happiness!

Finally, join me and renowned psychologist Roz Kalb, Ph.D., at the upcoming Can Do MS webinar on support partners. This free, interactive presentation will offer some great suggestions on the types of questions you are presenting here, and will connect to MS care experts that can provide support, as well as other caregivers going through similar situations. You can register for this webinar, broadcasting live at 8pm Eastern on Tuesday, October 11 (if you cannot attend live, the webinar will be archived and available to stream at your convenience), by completing this brief online form.

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.

Psychologist Response
David Rintell, EdD
Can Do MS Programs Consultant

First, remember that if you do not care for yourself, it is likely that your effectiveness as a support partner will eventually be greatly reduced. If you keep in mind that care of the self and care of your partners are linked in this way, it reduces the competition for the attention of the care provider. Therefore, some focus on your own needs is a necessity and should not be overlooked.Thank you for posing this very important question. Many support partners feel torn between providing care for their partner (or family member) and looking after their own needs. And as you have pointed out, after providing care, a support partner often feels depleted and unable to do something health promoting for himself or herself. Here are some ideas which might be helpful to the many support partners who are wrestling with this dilemma.

Secondly, let’s look at the statement, “No one is able to take care of me.” Part of being an effective support partner is identifying possible sources of support for yourself. The first place to look is your partner, the person for whom you care. Although she or he may not be able to provide physical help, s/he can certainly provide emotional support of some type. Even a “thank you,” or a “how are you doing today?” can provide an emotional boost. We know, however, that people living with MS sometimes need to be very self-focused in order to get through the day, and such may be unaware of your need for emotional support. You can tell your partner or family member that you need recognition, acknowledgement and gratitude. You can ask for it. And, if supportive statements from your partner are rare, make sure to let him or her know how much they are appreciated.

There are other potential sources of nurture and care for support partners, but it does take some effort to locate them. You may start by letting your closest friends or family members know a bit more about your life situation. Yes, they should already know because it is right in front of them, but they do not know what you need unless you tell them. If you tell your close friends and family, it is likely that they will offer help. They will not know what type of help you need. Make a list of tasks that would help you replenish. Each task should take about an hour, and if a friend or family member does the task, it will give you an hour to look after yourself; rest, go to the gym, meet someone for coffee, etc. Make index cards, each with one task. When a friend or family members asks, “Is there anything I can do.” Give them a card. The card might say, “Visit Lois for an hour on Wednesday afternoons, so I can go to Water Aerobics.” It might be, “Take our clothes to the cleaners.” It could say, “Find someone to visit Fred during lunchtime, so you and I could go out to lunch, and I won’t worry about Fred being alone.”

These days, many family members live far away and can’t offer support in person. Write some tasks on your list that can be done from afar: Find resources, call your partner on the phone, pay for a cleaning service or a few hours for an aide. There are many ways that we can support each other from a distance.

Finally, remember that your needs are as important as the needs of the person you support. Perhaps you like to go out to the local coffee shop, but your partner does not like to be seen in public with her walker. It is OK to emphasize that both of your needs have to be addressed. Although your partner or family member has the symptoms of MS, you are both living with all of the challenges caused by MS.

Frequently Asked MS Related Questions

Responses are provided as general educational resources and should not be interpreted as diagnoses, prognoses, or treatment suggestions.

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