Sept. 28, 2026

Episode 474: The House That MS Built with Sarah Timmerman

Show Notes
Transcript

Most people don't think about home accessibility until mobility changes force the conversation. But what if you decide to take control of the unknown and design your living space for whatever the future might bring?

Sarah Timmerman

My guest, Sarah Timmerman, explains how she took total control of her future by designing and building what she calls The House That MS Built—a home engineered from the foundation up to future-proof her independence through smart, universal design and relentless self-advocacy.

We'll also tell you about a research team that identified 4 biomarkers that, together, can help a neurologist understand whether a stem cell therapy is working for their patient weeks before that patient returns to the clinic.

We're sharing results of a trial that answered the question, "Can diet actually change what's happening at the cellular level inside the brain?" You'll want to hear these results!

And we'll tell you about a research team that has developed a derivative of an HIV medication that restored mobility and vision to mice with the mouse version of MS.

We have a lot to talk about! Are you ready for RealTalk MS??!

This Week: The House that MS Built :22

Have you downloaded the new RealTalk MS app for your iOS or Android device? 1:16

Researchers at Tisch Multiple Sclerosis Research Center of New York identify 4 biomarkers that can help physicians track the response to stem cell therapy in people living with progressive MS 2:01

New research identifies how gut health can lead to nerve cell damage in MS 4:49

Repurposed HIV medication restores lost function in the mouse model of MS 8:48

Sarah Timmerman shares her story and explains how relentless self-advocacy became the foundation for the House that MS Built 12:55

Share this episode 24:09

Next week 24:29

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LINKS

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STUDY: Effect of Intrathecal Injection of Mesenchymal Stem Cell-Neural Progenitors on Cerebrospinal Fluid Biomarkers in Progressive Multiple Sclerosis
https://pmc.ncbi.nlm.nih.gov/articles/PMC13585449

STUDY: High-Fat Diet Promotes T-Cell Mediated Synaptic Dysfunction in Multiple Sclerosis
https://link.springer.com/article/10.1186/s12974-026-04049-x

STUDY: The Nucleoside Analog Kamuvudine-9 Shows Protective and Therapeutic Efficacy in a Mouse Model of Multiple Sclerosis
https://science.org/doi/10.1126/scitranslmed.aei2870

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RealTalk MS Episode 474
Guest: Sarah Timmerman

Privacy Policy

WEBVTT

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It's September 29th, and we have a lot to talk about.

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Most people don't really think about home accessibility until their mobility

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changes force that conversation.

00:00:29.930 --> 00:00:33.690
But what if you decide to take control of the unknown and design your living

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space for whatever the future might bring?

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My guest, Sarah Timmerman, joins me today to discuss the story behind what she

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calls the house that MS built.

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A home she designed from the ground up with universal accessibility in mind,

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from 36-inch doorways and zero-threshold transitions to built-in wall supports

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where future grab bars can be easily installed.

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Sarah's journey has led her to collaborate with architecture students,

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ADA specialists, and her local MS community to future-proof her independence

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in what I consider an amazing example of bold self-advocacy.

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But before we get to my conversation with Sarah, I want to invite you to download

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the free Real Talk MS app for your iOS or Android smartphone or tablet. it.

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Once you download the app, the latest episode of Real Talk MS will always be waiting for you.

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You'll be able to download and listen to past episodes. You'll be able to save

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your favorite episodes.

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And what I'm particularly excited about is that I'll be able to share all kinds

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of bonus content with you.

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And that content will only be available on the app.

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So I hope you'll take a minute to visit the Apple App Store or the Google Play

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Store and download the free Real Talk MS app.

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And you'll find those links in today's show notes or at the Real Talk MS website at realtalkms.com.

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If you live with progressive MS, you know how frustrating the wait-and-see game

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can be after trying a new treatment.

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It often takes months of waiting to see if symptoms ease or if progression slows

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down, but a newly published study offers real hope for taking the guesswork out of that process.

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Scientists at the Tisch Multiple Sclerosis Research Center of New York have

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discovered four specific biomarkers that could give doctors an early indication

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of whether stem cell therapy is actively helping your body heal.

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As a quick review, biomarkers are biological clues found in fluids like blood

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or the spinal fluid that surrounds your brain and spinal cord,

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and they function like some of the internal gauges on your car's dashboard.

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They can alert a doctor that a treatment is working on a cellular level long

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before you experience a noticeable physical change in your day-to-day symptoms.

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In this trial, researchers studied people with progressive MS who were receiving

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an innovative stem cell therapy called MSCNPs.

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These cells are actually made from your own bone marrow and delivered right

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into your spinal fluid to protect nerves and dial down autoimmune attacks.

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When they analyzed patients' spinal fluid before and after receiving this stem

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cell treatment, researchers observed four encouraging changes.

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First, that inflammation cooled down.

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Levels of a marker called CCL2

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dropped, showing that harmful inflammatory signals were being turned down.

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Then they noticed that immune cells shifted their behavior.

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A protein called SCF decreased, pointing to a healthier balance in immune and support cells.

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And two other markers, called MMP9 and CHIT1, well, they both went up,

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which the research team linked directly to the nervous system kicking into repair mode.

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Watching these four biomarkers respond gave the researchers tangible biological

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proof that stem cell treatments are capable of stopping harmful inflammatory activity,

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and shifting the central nervous system toward protection and repair.

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For the progressive MS community, that means we've moved a step closer to a

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future where your care team doesn't just hope a therapy works.

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They can measure the healing happening inside you weeks before you step back into the clinic.

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If you'd like to review the details of this study, you'll find that link in today's show notes.

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For years, people living with MS have asked a fundamental question.

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Can diet actually change what's happening at the cellular level inside the brain?

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While it's become clear that eating well is a fundamental pillar of wellness,

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tracing the exact biological pathway from a meal to a nerve cell has been difficult to pin down.

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Well, that connection just got a lot clearer thanks to the work of a research team in Italy.

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The researchers set out to uncover how a high-fat diet might contribute to the

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kind of nerve cell communication problems that drive MS progression.

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The team started by looking at real clinical data from people living with relapsing-remitting MS.

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They found that people with MS who were overweight or obese experienced greater

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levels of physical disability and had elevated levels of a chemical messenger

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called glutamate in their cerebrospinal fluid.

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So what makes glutamate important? Well, in healthy amounts,

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glutamate is essential for brain cells to send signals across synapses.

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Those are the tiny gaps where nerves communicate.

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But when glutamate levels spike

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out of control, they overstimulate nerve cells to the point of damage.

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Scientists call this excitotoxicity, and it essentially exhausts and damages

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those connections your brain relies on.

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To understand how a high-fat diet drives that damage, the researchers investigated

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the biology step-by-step in preclinical models.

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What they found was a direct gut-to-brain chain reaction.

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First, they observed that a high-fat diet disrupted the balance of bacteria

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in the digestive tract, significantly reducing beneficial lactobacillus species.

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That bacterial imbalance activated immune cells, specifically CD4-positive effector

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T-cells, and it weakened the blood-brain barrier, allowing those inflammatory

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cells to migrate straight into the brain.

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Inside the brain, inflammatory signals kicked off, driving up glutamate and damaging the synapses.

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In fact, a high-fat diet alone was enough to trigger this synaptic disruption

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even without any active autoimmune attacks underway.

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But the study didn't just highlight the problem. It showed that this pathway can be interrupted.

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When researchers either blocked those inflammatory T-cells from entering the

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brain or introduced a targeted lactobacillus-based probiotic to rebalance the

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gut, they saw real improvements.

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T-cell infiltration dropped, inflammation cooled down, and synaptic communication was protected.

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But now let's take a moment for a critical clarification.

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While the clinical link between higher body weight, glutamate levels,

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and disability was observed in real MS patients, the specific dietary and probiotic

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interventions were tested in preclinical laboratory models.

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They were tested in mice.

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That means this isn't a signal to self-treat or buy over-the-counter supplements

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without talking to your health care provider.

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What it does confirm is that the conversation around nutrition,

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gut health, and brain health isn't just theory.

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It's become measurable biology.

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By pinpointing exactly how dietary fats and gut bacteria influence immune traffic

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to the brain, this research opens the door to developing real-world targeted

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therapies that protect those synapses from the inside out,

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and that means less accumulated disability.

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If you'd like to review the details of this study, you'll find that link in today's show notes.

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If you take a disease-modifying therapy for multiple sclerosis,

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you know that the primary goal of almost every approved treatment today is slowing

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down progression, avoiding new relapses, and stopping future damage from taking hold.

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But the question everyone living with MS ultimately asks is,

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can we ever get back what's already been lost?

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Well, a research team at UVA Health has reported that an experimental compound

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called camuvudine-9 or K9 not only stopped, but actually reversed paralysis

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and vision loss in the laboratory mouse model of MS.

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The researchers discovered that a class of well-known HIV medications called

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NRTIs has an unexpected superpower.

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They block a critical cellular inflammation pathway called the inflammasome.

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Building on that discovery, the researchers engineered K9 as a safer,

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more effective derivative of these NRTIs.

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And in mice with the mouse version of MS, the results were striking.

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Mice treated with K9 regained mobility and sight, recovering considerably more

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physical function than mice given an already approved MS disease-modifying therapy.

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The drug also preserved nerve fibers and protected the fragile myelin coating that MS targets.

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And it stopped the rise of neurofilament light chain, which is a key biomarker

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that's used to measure ongoing nerve cell damage.

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What makes this research especially

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interesting is that the team didn't rely solely on the lab bench.

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When they analyzed real-world health insurance records covering more than 3

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million people, they found that people taking NRTI medications had a 41% lower risk of developing MS,

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and if they were already living with MS, they experienced a 36% drop in annual relapse rates.

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Well, now we have to take a breath as we process all of this,

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so I can remind you that these symptom reversal results took place in a preclinical

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mouse model, and there are huge differences between a mouse brain and a human brain.

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I'll also point out that those retrospective insurance database studies only show associations.

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That's not the same as a guaranteed cause and effect. So K9 remains experimental

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for MS, and human clinical trials are going to be essential to see if this functional

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recovery translates from mice with MS to people with MS.

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I should also mention that canine is already in human clinical trials for eye

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conditions like diabetic macular edema and thyroid eye disease,

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which means researchers aren't starting from scratch on compiling human safety data.

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So while patience is called for here, this research represents an important

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shift in focus as we see the research community moving beyond therapies that

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just press the pause button on MS,

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and instead aim for genuine restoration.

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If you'd like to review the details of this study, you'll find a link in today's show notes.

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While scientists are working hard in the lab to unlock future therapies that

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could one day restore lost function, living with MS means navigating the physical realities of today.

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And when most people think about things like home accessibility,

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well, that doesn't really become a serious conversation until mobility changes

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force that conversation.

00:12:35.060 --> 00:12:39.730
Sarah Timmerman took total control of her future by designing and building what

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she calls the house that MS built,

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a home engineered from the foundation up to future-proof her independence through

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smart universal design and relentless self-advocacy.

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In a moment, we'll meet Sarah.

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Sarah Timmerman lives with MS, and she spent the last year designing and preparing

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to build what she calls the house that MS built. Welcome to the podcast, Sarah.

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Welcome. Thank you so much for having me. I really appreciate it. I'm excited.

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So before we get to the house, and we absolutely will, tell me,

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when were you diagnosed and what were the changes that led to that diagnosis?

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Good question. I was diagnosed. I say COVID gave it to me, but I know COVID didn't.

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I just know that COVID piled on all the symptoms so that I could be diagnosed

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because looking back, we always see those onesie twosies that are like,

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oh, that was weird. That was weird.

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But then until you get multiple, sometimes you can't really be diagnosed.

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So I was diagnosed six years ago, right about now.

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Yesterday would have been my six year anniversary of going to my first doctor

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appointment. And so yeah, I've been living with this for six years.

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When I talk to people and we happen to be talking about accessibility,

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for most people, it comes up,

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in the moment when they realize they're facing some sort of a loss or some sort

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of progression that's affecting their mobility and they start thinking about accessibility.

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What motivated you to start thinking about your future accessibility at home?

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Well, because when I was diagnosed, some of my first symptoms were stairs.

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I could not trust my feet to go down a stairs.

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And at the time, I lived in a two-story home.

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And I was like, wow, okay, this isn't going to work. Thankfully,

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those first few days on the steroids, I was able to regain a lot of that mobility

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in my feet and trusting my feet. So now I do stairs fine.

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But what happens one day when I can't again? What happens one day when there's

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other kind of mobility issues that are not stairs but are just a little stair, you know?

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Just because it's a big stair, little stairs are just as difficult sometimes,

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too. So that really was like, how am I going to live here forever?

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I'm not. So what am I going to do? So that's really...

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Well, to your point, you've taken a whole lot of steps beyond just thinking

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about future accessibility.

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Did you already have a background in architecture before digging into this project?

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Not at all. We remodeled several of our old houses.

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So I know enough to know enough, but not enough to build a whole house.

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But yeah, I started there.

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Started with a piece of paper and was like, what am I going to do?

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And what did you do?

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I drew what would fit my needs and my children's needs right now.

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So I just got divorced. And so I knew that we needed, you know, one level.

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We needed three bedrooms. We needed enough places, wheelchair turnarounds if I ever get there.

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So I wanted to be able to get through every doorway. So every doorway in this

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home is 36 inches because I won't be able to retrofit anything in the future.

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So I needed to do it now the right way the first time.

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I have only two transitions in this home, the front entry and the sliding glass

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door. Everything else is concrete. It'll be all one level slab.

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All the doors are 36 inches. I've considered lever handles,

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future backing for future grab bars in hallways, in bathrooms,

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in kitchens, just areas where might need a grab bar.

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Let's go ahead and place that extra backing in the wall to be able to support

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that grab bar. Even if I don't put it in right away,

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I have the support in there to do that.

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You know, as you were describing this, the 36-inch wide doorways and,

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putting in the backing for future grab bars if necessary, did you have an understanding

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of universal design or have you been learning this in real time in this project?

00:17:31.100 --> 00:17:35.120
Yeah, learning this in real time as I go. And I've had a lot of help.

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So at Mizzou, there's a group called Mizzou Leaders in Construction.

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It's a group of students that are architecture students.

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So I reached out to the architecture department and was like,

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I need to build a house and I know I need to start with blueprints and that

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comes from architecture.

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So I just am kind of reverse engineering. I know my need and I start finding people that can help me.

00:18:01.750 --> 00:18:08.590
So the students invited me to a design charrette, and that's where we thought

00:18:08.590 --> 00:18:15.780
through all of the different layouts, all of the different ADA universal design ideas.

00:18:15.780 --> 00:18:19.130
And I wouldn't say all of them because there is so many.

00:18:19.470 --> 00:18:23.800
And also at Mizzou is an organization called the Great Plains ADA.

00:18:24.200 --> 00:18:30.840
They sent in a representative to also kind of think through some of those other

00:18:30.840 --> 00:18:33.790
things that I might not be aware of as yet

00:18:34.380 --> 00:18:41.390
and I'm part of a really great support group also through Mizzou so I also took

00:18:41.390 --> 00:18:44.130
the design to them and said all right

00:18:45.040 --> 00:18:49.600
You guys live with more mobility issues than I currently do,

00:18:50.130 --> 00:18:52.180
but I know I one day could.

00:18:52.790 --> 00:19:01.450
What do you see here that I could change that might be a burden for you in your life

00:19:02.450 --> 00:19:06.680
If you were to build this house, what would you change? And so they gave me

00:19:06.680 --> 00:19:08.560
some really great input as well.

00:19:08.920 --> 00:19:14.960
So it's just been a really wonderful journey with a lot of people that have

00:19:14.960 --> 00:19:19.370
kind of taken me under their wing and said, I like this idea.

00:19:19.370 --> 00:19:23.190
Let's help you and giving me inspiration and ideas.

00:19:23.860 --> 00:19:28.830
So when is groundbreaking and what's your projected finish date?

00:19:29.620 --> 00:19:36.350
Groundbreaking actually technically took place on my birthday this year, which was June 29th.

00:19:36.720 --> 00:19:38.150
So it's really special.

00:19:38.520 --> 00:19:41.500
And we broke ground, we put in the septic system.

00:19:41.920 --> 00:19:46.790
And next week, I have a meeting with the builder where I'm working with Anderson

00:19:46.790 --> 00:19:48.590
Homes in Columbia, Missouri.

00:19:49.210 --> 00:19:56.490
And next week, I have a meeting with them to get a groundbreaking date for the foundation.

00:19:56.850 --> 00:20:01.690
And then I'll have the whole timeline of when everything will be built.

00:20:01.690 --> 00:20:04.660
I really hope that it will be done by the end of the week.

00:20:04.660 --> 00:20:10.290
Well, it sounds like you've enlisted the assistance of most of the state of

00:20:10.290 --> 00:20:11.780
Missouri in one way or another.

00:20:13.690 --> 00:20:17.550
But I think that's great. I mean, it seems you've picked all the right collaborators.

00:20:17.550 --> 00:20:25.040
And from what I'm hearing, it sounds like they have been very willing to lend you their expertise.

00:20:25.610 --> 00:20:30.070
Yes, absolutely. And I definitely couldn't do this without a builder because

00:20:30.560 --> 00:20:33.780
the stress of I've only lived in this area for two years.

00:20:34.180 --> 00:20:39.140
So I don't know who the good contractors are. I don't know who to trust and who not to trust.

00:20:39.670 --> 00:20:44.800
And the stress of getting all of that in line and all of the people and all that.

00:20:45.730 --> 00:20:51.400
I just I would probably be needing that wheelchair sooner rather than later.

00:20:51.400 --> 00:20:56.450
So I just am really, really grateful for all the people that have helped and

00:20:56.850 --> 00:21:01.700
are continuing to help because it's really stressful to build a house.

00:21:01.700 --> 00:21:05.970
I've never done it before, but from ground up, it's really stressful.

00:21:05.970 --> 00:21:10.860
So I appreciate all of the people who are helping.

00:21:11.550 --> 00:21:15.220
You know, I think you've taken a very interesting approach to planning your

00:21:15.220 --> 00:21:18.150
future. And the reason I say that is if,

00:21:18.980 --> 00:21:23.570
As I talk to so many people who are living with them, as I know from my own

00:21:23.570 --> 00:21:29.500
experience watching my wife's MS progress, it's that uncertainty of the future,

00:21:30.590 --> 00:21:33.290
that really, it gets in the way.

00:21:33.290 --> 00:21:39.440
And it makes it very difficult to plan. You've taken a very proactive approach,

00:21:40.010 --> 00:21:47.510
to not eliminating some of the uncertainty, but being prepared for what may or may not occur.

00:21:48.370 --> 00:21:55.070
Yes, I consider it future-proofing my life because I know that I won't have

00:21:55.070 --> 00:21:57.970
the means or funds or ability to do this.

00:21:58.390 --> 00:22:03.610
I need to do this the right way the first time and be able to do all the research

00:22:03.930 --> 00:22:08.700
and have all the options and ideas to future-proof.

00:22:09.770 --> 00:22:16.400
My life and live in my home as long as possible and make it as accessible as

00:22:16.400 --> 00:22:20.030
I can for whatever comes.

00:22:20.890 --> 00:22:25.840
What would you say is the takeaway from the house that MS built for the broader MS community?

00:22:26.710 --> 00:22:34.560
Self-advocacy, honestly, that you know what you need and you just have to go find it.

00:22:35.140 --> 00:22:39.480
I knew I needed help in building. I knew I didn't know everything in what I

00:22:39.480 --> 00:22:45.840
was doing, and I didn't know all of the future things that could happen,

00:22:45.840 --> 00:22:47.500
all the needs that I could have.

00:22:47.500 --> 00:22:51.930
I don't know that I'd need a wheelchair or any other mobility aids,

00:22:51.930 --> 00:22:54.830
and what could that look like?

00:22:54.830 --> 00:23:01.370
And just being able to have those conversations with people that know and just

00:23:01.590 --> 00:23:08.080
constantly self-advocating for your needs in the medical field, your needs in the world.

00:23:08.720 --> 00:23:13.630
Don't give up. Don't give up. Just keep looking for all those people.

00:23:13.630 --> 00:23:17.170
They're out there that want to help because it can get hard.

00:23:17.170 --> 00:23:19.490
It can get lonely, but there's help out there.

00:23:19.970 --> 00:23:23.050
So how can we follow your progress as you build your house?

00:23:23.610 --> 00:23:28.620
I have created social media for all of the platforms.

00:23:29.560 --> 00:23:36.190
It's the house that MS built. so it's on tiktok, it's on facebook instagram, youtube,

00:23:36.190 --> 00:23:39.270
gmail it's all the house that ms built

00:23:39.710 --> 00:23:45.010
so any location i'm still growing that and learning as i go there as well

00:23:46.180 --> 00:23:46.940
That's where I'm at.

00:23:47.770 --> 00:23:51.470
Well, Sarah Timmerman, I want to thank you for sharing this amazing project

00:23:51.470 --> 00:23:57.130
with us and for reminding us about the power in self-advocacy.

00:23:57.660 --> 00:23:59.670
And thanks so much for talking with me today.

00:24:00.320 --> 00:24:02.180
Thank you so much. I have a great day.

00:24:02.900 --> 00:24:07.460
That's going to wrap up this episode of Real Talk MS. Real Talk MS is powered

00:24:07.460 --> 00:24:09.170
by the National MS Society.

00:24:09.600 --> 00:24:13.580
And you can share this episode of the podcast by letting your friends or family

00:24:13.580 --> 00:24:21.150
members know that all they have to do is point their web browser at realtalkms.com slash 474.

00:24:21.920 --> 00:24:25.880
You'll find that link in today's show notes, so you can easily copy and paste

00:24:25.880 --> 00:24:28.310
it right into an email or a text.

00:24:29.290 --> 00:24:33.780
We often talk about the physical symptoms of MS, but cognitive changes can be

00:24:33.780 --> 00:24:37.030
just as disruptive and completely invisible.

00:24:38.150 --> 00:24:43.240
Next week, research neuropsychologist Dr. Elizabeth Gromisch joins me to share

00:24:43.240 --> 00:24:47.290
strategies designed to compensate for MS-related cognitive issues.

00:24:48.080 --> 00:24:52.240
We'll also talk about how Dr. Gromisch is working with people living with MS

00:24:52.390 --> 00:24:56.920
to co-design brand new digital tools that will catch cognitive issues sooner

00:24:57.260 --> 00:25:00.580
and put evidence-based strategies right into your hands.

00:25:01.010 --> 00:25:03.580
I hope you're planning to join me for our conversation.

00:25:04.500 --> 00:25:10.750
I'm Jon Strum. Thanks for listening. Stay safe and make healthy choices.

Episode 474: The House That MS Built with Sarah Timmerman

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