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Transcript: Ask Me Anything with Kimberly Castelo

Welcome, My MSAA Community, to our Ask Me Anything with Kimberly Castelo! We are excited to have Ms. Castelo joining us to answer YOUR questions.

Kimberly Castelo, LMFT, CST, CIIP, is a Marriage and Family Therapist who is a Certified Emotionally Focused Couples Therapist and an AASECT Certified Sex Therapist. Her passion is to help couples and families live their best selves and to find connection and pleasure.

For the next hour, please feel free to ask Ms. Castelo your burning questions about relationships and multiple sclerosis as a reply to this post. Don’t forget to keep refreshing the page to see the latest questions and responses.

Bring on your questions!

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Glad to be joining you!

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To kick things off, we have a question we commonly receive on our Helpline - "I am so depressed I do not want to have intimacy any more...what do I do?"

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That is a common feeling! What helps with this is several things: 1) Talk to you doctor if you are on a SSRI and make sure it is not making your libido low 2) Expand the definition of sex to playfulness, cuddling, watching a movie together. Small connection points can help aid with desire and intimacy

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What if no matter what you do or try, you’re as dry as a bone and you just cannot make it to climax? Take note that in the mood and very passionate.

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Difficulty to climax is very common. I would talk to a sex therapist about that. They can help give you some mindfulness techniques to help with climax issues!

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Another question from our Helpline - "I worry to talk about things because I feel like a burden. Any suggestions?"

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This is something I hear a lot. It is totally normal to feel scared to share your feelings. Really the best way to help that feeling is to share how you are feeling with your loved ones. Even telling them "I am scared to share this because I feel I will be a burden". That kind of conversation brings closeness, expands the circle of support and actually helps reduce stress and burden!!!!

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Hello! I'm a journalist from BioNews reporting on this chat. Is it OK if I ask a question to be answered if there's time? What are the biggest challenges faced by the non-MS-affected partner when having a sexual relationship?

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Thanks for being a part of the discussion.

One main concern I hear is that it is difficult to be in the caregiver role and also the lover role. Those two hats can look and feel very different, so getting help on how to manage those feelings from a sex and couples therapist would be very helpful.

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We often hear from people who are in a new relationship who are wondering when might be the right time to disclose to their partner that they have MS.

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Great Question! This question might stir up some feelings of vulnerability for some, because disclosing that we have MS might feel scary.

So really I would suggest a few things:

1) Are you comfortable sharing even if their response might not be helpful?

2) What is the goal of sharing?

3) Do you know what you want from the person when you do disclose? ie. knowing that they understand, will support you etc and can you share that desire with them.

Truthfully, it is really important to know that 'your MS story' is yours and you are allowed to share or not share it at any time. Taking your time to share your MS story is totally OK. It is also totally OK to be very open with your MS story.

Either way, I would claim what you need from the person you are sharing with.

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I have other questions but I don't want to take up time needed by others. Is it OK to ask another?

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Please feel free to ask anything!

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If so, my question is: Is there a medical role that sex can play in easing the symptoms of MS? For example, physical, psychological? If yes, how important is it that someone with MS continue to try to remain active sexually despite any perceived challenges?

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Thanks for asking!

There is not specific research about sex reducing MS symptoms.

With that said, there is research that shows that when people engage in loving, consensual touch their pain, anxiety, stress decreased.

There is also research that loving, consensual touch helps improve mood and overall outlook.

Which is why sex, intimacy is such an important topic for EVERYONE'S health!

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A common thought is that we don’t want people to think that is all we are...a person with MS.

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100%%%%!!!!

Thank you. It is important for others to know that we are more than our diagnosis!

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What options are available for someone who may be experiencing bowel issues that may be impacting intimacy?

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I tried prescription meds for constipation and they don’t work. I just use off brand laxative which seems to help. Just mentioning. Thank you

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Great question!

There are a couple things I would do:

1) Talk to your neurologist and urologist about medications that might be able to help bowel issues

2) Talk about your fears about intimacy when bowel issues might be present with your partner. I know that might be hard, but what you might find out is, your partner is not bothered at all by any bowel concerns that might come up. They just want to be CLOSE TO YOU!!!

3) Talking to a couples therapist who knows about MS would be helpful too. They can help form the language needed to talk about this topic. A couples therapist also can help normalize this situation and reduce anxiety around the topic

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I get awful gas because of constipation. I just let it rip and I usually get laughter.

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I love it! Great way of normalizing and making it playful!

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What would you recommend for someone who is having difficulty communicating with their partner?

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I would recommend a couple of things:

1) I would look to the book Hold Me Tight by Sue Johnson. It really helps us understand the 3 different ways we communicate and how to get out of those patterns. We talked about that last week during our MSAA webinar on Intimacy, so feel free to check that out as well.

2) HOLD ME TIGHT workshops are great as well to help couples learn to communicate

3) Also, seeking out help from a couples therapist is always helpful in building communication skills.

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Anyone interested in viewing the webinar that Kimberly presented with MSAA on Intimacy and Family Planning with MS, can view it here: mymsaa.org/videos/intimacy-...

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For anyone who might be planning to have a family, what should they consider?

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What's the best wayto even start the conversation? Sry I'm late

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Glad to have you here!!!!

Would love you to expand more which conversation you would like to start?

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Say On dating, if you don't tell someone right away, how would you go about starting that conversation?

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So Glad to have you here also! Thank you!

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Great question.

I am always for being more overt in my communication.

So if I am unsure on how to start a conversation, I say that!

"I am not sure how to start this conversation, but there is something I want to share with you about myself."

Usually when you begin statements in that manner, you invite the other person to be understanding and supportive.

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I will definitely have to pass that along. Thank you so much!

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Planning a family is such a big job so I would consider a few things:

1) Talk to your neurologist about medications you should or should not take while pregnant or nursing

2) Expand your support system!!! Having a baby brings a lot of joy into the family and a lot of stress. Be sure to look to family members, friends, faith communities, neighbors for support!

I always suggest that couples have at least 10 people who can help them with new baby: i.e. babysitting and even making food for the new parents. Expanding your support system during these times can make the transition less stressful!

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Given your comments elsewhere in this chat, would you say that it's important for people with MS and their partners to try to have as regular a sex life as possible and if needed, to seek help from a counselor to try to make it happen?

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I want to be careful here, because people in general have a lot of shame around how much sex they are or are not having.

People with or without MS usually report sexual dysfunction at some point. It is also very common for people in general to struggle with intimacy!

What I am hoping for is that people do not put pressure on themselves to have sex or not to have sex. That just kills a libido!!!

What I want people to focus on is connection and pleasure and allow themselves to define what that looks like. This is where a sex therapist would be beneficial.

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thank you for the clarification. I understand.

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I e talked to my therapist about this and want your thoughts. My adult son is in denial about it. Usually doesn’t want to hear about my bad day. He says just rest, yet keep moving. Sent him numerous articles and I know he doesn’t read. Therapist told me her thoughts. Want to see if you agree. Thanks!

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It is totally normal for family members to be in denial. It is actually part of the grief cycle.

It is not easy to understand that a parent has MS, there can be a lot of fears associating with it. I would keep talking to your therapist! GOOD WORK.

I would also tell him "Son, I know it is hard to talk about my MS. I am here whenever you need me and to talk to me". In that framework you are attending to his fear in an attachment way which might help the conversation.

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On behalf of everyone here at MSAA, we want to thank Kimberly Castelo for her time and expertise, as well as our My MSAA Community members who have participated and asked questions! We would also like to thank Sanofi Genzyme for supporting this AMA through an educational grant. For more information about Relationships and MS, please check out our archived webinar “Intimacy and Family Planning with MS” at mymsaa.org/videos/intimacy-... and MSAA’s podcast “Exploring Relationships and MS” at mymsaa.org/ms-information/m...

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Thanks for having me!

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