Breaking it Down – A Multiple Sclerosis Podcast
Bonus Episode: Real Stories on How to Come to Terms with a Progressive MS Diagnosis
Release Date: March 31, 2025
Hosts: Helena and Nick (MS Trust)
Episode Overview
This special bonus episode features extended interviews with members of the MS community, focusing on personal experiences of coming to terms with a progressive MS diagnosis. The episode aims to provide real, unfiltered stories to offer support, reassurance, and practical advice for those grappling with the reality of progressive forms of multiple sclerosis (MS), namely primary progressive MS (PPMS) and secondary progressive MS (SPMS). The featured voices are Yvonne (living with PPMS) and husband-wife duo Adam and Sharon (navigating Adam’s transition from relapsing-remitting to SPMS, and administrators of the Instagram account “Me, You and Multiple Sclerosis”).
Key Episode Segments & Insights
[01:21] Yvonne’s Story: Living with Primary Progressive MS
Background and Diagnosis Journey
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Delayed Diagnosis: Yvonne experienced MS symptoms for 5–9 years before being diagnosed in 2013, including loss of sensation in her feet and various bladder/bowel issues. She initially saw numerous specialists, underwent unnecessary and invasive tests, and almost had incorrect surgery before a neurologist made the correct call.
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Emotional Response: The diagnosis felt “a bit of a body blow” ([07:15]), especially as, at the time, there were no effective treatments for PPMS.
“...when I went with my husband to hear about how we were going to manage this thing, that was the answer. There’s nothing. And that was more of a shock than the diagnosis, I think.”
— Yvonne, [08:44]
Emotional Coping & Support
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Grieving Process: Yvonne describes a period of deep sadness bordering on clinical depression.
“The bottom fell out of it, I think...looking back, there was a period of at least six months where I was probably clinically depressed...a lot of crying, there’s a lot of, ‘why me?’”
— Yvonne, [09:30] -
Turning Point: Decided to be open about her diagnosis, undertaking a skydive to raise funds, and emailing all 9,000 staff at her NHS Trust about her situation.
Coping Strategies and Advice
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Active Involvement: Maintained involvement in volunteering, professional work, and staying mentally stimulated.
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Focused on Fitness: Emphasizes physical activity as key to sustaining function and mindset.
“Be as fit and healthy as you can be...the more active we can be, even within the limits of whatever damage the MS has already done, I think that that not only gives you a sense of control but also does physically give you some control.”
— Yvonne, [18:17] -
Broader Perspective on MS: Warns against letting MS define you—encourages living as fully as possible, doing desired activities without delay, and balancing awareness of MS with letting it move “to the back” of your mind.
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Practical Tip: Don’t assume every new health issue relates to MS—get everything checked out.
[23:38] Adam & Sharon’s Story: Navigating a Family’s MS Journey
Diagnosis and Early Challenges
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Onset: Adam’s MS surfaced abruptly—he woke up suddenly unable to stand ([24:02]) and then faced a difficult, lengthy diagnostic process.
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Misdiagnosis: Initial experiences with healthcare professionals were invalidating, and Adam was told his symptoms were in his head.
“I was made to feel like a hypochondriac...And then we went to another hospital. The minute I walked in there, the guy looked at me and said, I think you’ve got MS.”
— Adam, [26:05] -
Relief at Diagnosis: Upon hearing it was MS, Adam felt oddly relieved—at least it wasn’t cancer or motor neuron disease ([27:02]).
Family & Relationship Impact
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Prolonged Uncertainty: Repeated hospital visits, absence from work, and the strain of not having answers created significant relationship stress.
“For us in our relationship it was a really testing time...when you’re hitting the 18 month stage and nothing’s been, you know...You’re then sort of right. It puts a lot of pressure on your relationship.”
— Sharon, [33:39] -
Humorous Anecdotes: The couple unflinchingly shares stories about misunderstanding MS, such as Sharon urging Adam to “push through” his fatigue, and moments of comic embarrassment about mobility issues.
Transition to Progressive MS
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Diagnosis of SPMS: The shift to secondary progressive MS was delivered matter-of-factly by the neurologist, which felt abrupt and scary.
“It was just your secondary progressive. You’re not going to have any up and down. You’re just pretty much going to go down. And that was, that was really it.”
— Adam, [36:24] -
Reaction: For both, the label SPMS sounded like an immediate, steep decline.
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Adjusting to New Reality: Over time, both found the greater predictability of progression brought a sense of stability compared to the “ups and downs” of RRMS.
“In a way, secondary progressive was actually better than relapsing-remitting because it’s so unpredictable.”
— Adam, [41:11]
Starting “Me, You and Multiple Sclerosis” & Reaching Others
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Instagram Account Motivation: Adam and Sharon wanted to counter the doom-heavy narratives online, showcase practical daily experiences, and fill a gap for family-oriented perspectives.
“Everything was just all doom and gloom...I thought, well, that’s not my life right now...So why don’t we show [otherwise]?”
— Adam, [45:06] -
Community Effect: Their account attracts questions from all corners of the MS community—patients, carers, parents—about coping with progression, adjusting to diagnosis, and daily life.
“Try and take that fear away...Whether you know, it’s Adam you’re relating to or whether it’s me that you’re relating to. Try and take that fear away. That, okay, this is going on. You don’t have to answer everything today.”
— Sharon, [49:36]
Tips, Acceptance & Living with MS
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Embracing Acceptance: Adam describes a sudden, unforced shift from resisting MS to acceptance—allowing MS to “move to the back” of his mind.
“One day it just went. And that was it. And from that moment I’ve never looked back...I know I’ve got MS, but I don’t think about it. I know it’s there, but it’s not at the front of my mind, it’s at the back.”
— Adam, [44:25] -
Practicalities & Planning: Sharon emphasizes the critical importance of practical preparation—mobility aids, adapted housing, support networks—“get your ducks in a row.”
“Plan for your worst days. I mean, you might never have them...But, you know, it’s well to be organized for them.”
— Sharon, [54:48] -
Dealing with Daily Life: Adam shares their approach to sometimes embarrassing situations—meeting adversity and bodily mishaps with laughter and openness.
“The way we deal with all that sort of stuff...is just with humor. Just laugh at it.”
— Adam, [59:06] “I really believe laughter is the best medicine...if humor is something you can get over anything.”
— Adam, [61:59]
Notable Quotes & Moments
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On Different MS Journeys:
“You have your own MS and regardless of the label that’s applied to it, you and it will go on a journey together that will be unique to you.”
— Yvonne, [08:59] -
On Support Systems:
“Make sure you seek out help from GP, neurologist, MS nurse...make sure you’ve got that team of people wrapped around you.”
— Yvonne, [22:51] -
On Marriage and Caring:
“How we actually work...She tells me what to do and I do it.”
— Adam, [56:28] -
On Humor and MS:
“We've laughed more with Adam having MS than we did before.”
— Sharon, [62:11]
Key Timestamps
- [01:21] – Yvonne’s story begins
- [09:30] – Yvonne speaks emotionally about her reaction to diagnosis
- [13:27] – Yvonne turns her devastation into positive action
- [18:05] – Yvonne’s top tips for those worried about progression
- [23:38] – Adam and Sharon introduce their journey and Instagram account
- [26:05] – Adam’s difficult diagnosis experience and relief at finally having answers
- [33:39] – Sharon discusses relationship strain during uncertainty
- [36:24] – Adam receives secondary progressive diagnosis and its impact
- [41:03] – Both reflect on secondary progressive as “easier to manage” than unpredictability of RRMS
- [44:10] – Adam describes the moment he accepted MS
- [54:09] – Adam and Sharon’s practical advice for listeners
- [59:06] – Humor as a coping strategy for daily MS challenges
- [62:30] – Closing thanks
Final Takeaways
- Coming to terms with progressive MS is deeply personal—a process of grief, anger, acceptance, and adaptation.
- Both Yvonne and Adam & Sharon stress the importance of:
- Not letting MS define your whole identity or life.
- Seeking support—both formal (medical professionals) and informal (community, loved ones).
- Staying physically active and mentally engaged wherever possible.
- Planning proactively for potential future needs, but not letting anticipation of decline overshadow the present.
- Using humor, openness, and community connection to manage day-to-day realities and mental health.
- Listening to and sharing real, lived experiences—both the struggles and the laughter—can help those newly diagnosed or facing progression feel less alone and more empowered.
Follow Adam & Sharon: [Me, You and Multiple Sclerosis on Instagram]
Need support? Contact the MS Trust helpline: 0800-03-23839 (Mon–Fri, 10am–4pm UK time) or email ask@mstrust.org.uk