Category: Support Partner Voices

MS is a “we” disease, not a “me” disease.
It affects not just the person with MS, but also their family, friends, and others who support and care for them.

The role of a support partner in the life of someone with MS is pivotal. Together, we can embrace and uplift these caring individuals! This resource center is here to help support partners with their unique needs and challenges.

MS Care From All Angles: Partner and Provider

MS Care From All Angles: Partner and Provider

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MS Care From All Angles: Partner and Provider – Episode 160 – Transcript –

On this episode on the Can Do MS Podcast, we welcome guest Timothy West who is a neurologist with a unique perspective on MS. His own experiences as an MS care partner have given him insights and a passion for helping his patients with MS. We talk about how far MS treatments have come since his mother’s diagnosis and the hope he has for the next generation of MS patients. Timothy also opens up about his experiences as a care partner and he reminds us all to be patient and gentle with ourselves.

When Your Child Has MS

When Your Child Has MS

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When Your Child Has MS – Episode 118 – Transcript

Listen to this episode of the Can Do MS Podcast and you will hear the story of two mothers whose children were diagnosed with MS in their mid-to-late teens.

Dr. Scott Newsome’s Story: The Road From Caregiver to MS Provider and Researcher – Part 2

Dr. Scott Newsome’s Story: The Road From Caregiver to MS Provider and Researcher – Part 2

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Dr. Scott Newsome’s Story: The Road From Caregiver to MS Provider and Researcher – Part 2 – Episode 97 – Transcript

Join us for the second part of our conversation with Dr. Scott Newsome. On this episode, Dr. Newsome will be back to talk about how his role as an MS caregiver has impacted his career today as an MS specialist. We’ll also learn more about what Dr. Newsome has been focusing on and his exciting current research.

As promised, learn more about the current clinical trial that Dr. Newsome is working on, the TREAT-MS Clinical Trial for Multiple Sclerosis Patients.The TRaditional versus Early Aggressive Therapy for Multiple Sclerosis (TREAT-MS) Trial will help inform patients and the broader healthcare community on whether patients would most benefit from early, possibly more risky aggressive therapy or if starting with a less aggressive (and, often, less risky) therapy, followed by a switch if breakthrough disease activity occurs, is warranted. In addition, this study will help identify if there is a specific patient population or short-term biomarker(s) that is strongly predictive of long-term disability that can result from MS. For a deeper dive, view the Neurology Live video: Peers and Perspectives: The Induction vs. Escalation Approach to MS and the TREAT-MS Trial or you can also email TREAT-MS at treatms@jhmi.edu.

Dr. Scott Newsome’s Story: The Road From Caregiver to MS Provider and Researcher – Part 1

Dr. Scott Newsome’s Story: The Road From Caregiver to MS Provider and Researcher – Part 1

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Dr. Scott Newsome’s Story: The Road From Caregiver to MS Provider and Researcher – Part 1 – Episode 92 – Transcript

Join us for this two-part conversation with Dr. Scott Newsome on his journey from being a MS caregiver to becoming a MS provider and researcher. In today’s episode, we’ll hear from Dr. Newsome about his experiences as an MS caregiver and support partner to his mother, who had multiple sclerosis during Dr. Newsome’s childhood and formative years. Dr. Newsome will share what it was like to have a parent with MS and the ultimate impact that the caregiver role had for him and his future.

Caregivers also experience MS, clearly differently than the person who carries the diagnosis but experiencing the diagnosis and their own issues, nonetheless. Caregivers can experience significant stress, lack of knowledge, fatigue, role change, role confusion, and even guilt. While they want to be the best support they can be, they do not have a roadmap or guide that tells them what to do. The role of the caregiver is often underrecognized and under-supported. MS is a “we” disease not a “me” disease. Learn more about support partner resources and upcoming programming.

Caring and Curating – A Support Partner’s Journey

Caring and Curating – A Support Partner’s Journey

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Caring and Curating – A Support Partner’s Journey – Episode 41 – Transcript

No one has it all figured out—and that’s OK! In today’s podcast, hear one support partner’s journey as she has navigated life in “the sandwich generation,” caring for her husband with MS, daughter, and parents. It’s not without its challenges, but curating her family’s life with MS has allowed Cindy to focus on what’s always been there: loyalty, love, and friendship.

Talking Self-Care With Jon Strum

Talking Self-Care With Jon Strum

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Talking Self-Care With Jon Strum – Episode 40 – Transcript

Being a care partner has been a central role in Jon Strum’s life. His experiences led him to become an MS advocate and start the RealTalk MS podcast. Today, we’ll hear from Jon about the drastic effects of MS, not just in his wife’s life, but his own. Reflecting on the importance of self-care, he shares his advice and encouragement for other support partners.

Managing Bowel and Bladder Symptoms

Managing Bowel and Bladder Symptoms

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Managing Bowel and Bladder Symptoms – Episode 37 – Transcript

Some of the most challenging symptoms in MS can be bowel and bladder-related issues. Join us as we talk to our guests, Randy and Sue, about the bowel and bladder-related challenges Randy has experienced since his MS diagnosis, the management strategies they have found useful and suitable for their lifestyle, and the importance of self-advocacy.

For additional resources on bowel and bladder symptoms, please visit our website at the following link: https://www.cando-ms.org/online-resources/bowel-and-bladder.

When Your Child Has MS

When Your Child Has MS

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When Your Child Has MS – Episode 29 – Transcript

Are you someone who provides support to a loved one living with MS?  As a support partner, you often focus solely on the needs of your loved one with MS, but it’s important to recognize the unique needs support partners have, too. How can you ensure that both you and your loved one living with MS have their needs addressed? What strategies lead to a successful partnership while navigating the challenges of MS?

Praising Partnerships

Praising Partnerships

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Praising Partnerships – Episode 12 – Transcript

Are you someone who provides support to a loved one living with MS?  As a support partner, you often focus solely on the needs of your loved one with MS, but it’s important to recognize the unique needs support partners have, too. How can you ensure that both you and your loved one living with MS have their needs addressed? What strategies lead to a successful partnership while navigating the challenges of MS?

Join physical therapist Mandy Rohrig and couple Dave and Laura as they discuss how Dave’s MS diagnosis has changed the dynamics of their relationship over time. They recently celebrated their 31st anniversary, but Dave’s diagnosis came after being married for several years. Listen as they dissect what and how things have changed between them, and how having a thorough understanding of your partner can make all the difference.

Growing Together

Growing Together

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Growing Together – Episode 11 – Transcript

Are you someone who provides support to a loved one living with MS?  As a support partner, you often focus solely on the needs of your loved one with MS, but it’s important to recognize the unique needs support partners have, too. How can you ensure that both you and your loved one living with MS have their needs addressed? What strategies lead to a successful partnership while navigating the challenges of MS?

Join physical therapist Mandy Rohrig and couple Caroline and Tim as they discuss the challenges of navigating Caroline’s MS. Prior to meeting two years ago, Tim knew very little about MS. Listen to hear how their deep love for one another and honest, effective communication strategies have propelled them to grow closer than ever in the face of Caroline’s diagnosis.