RealTalk MS: Episode 420

"A DIY Kit for Improving Your MS Journey" with Julie Polisena

Host: Jon Strum
Guest: Julie Polisena
Release Date: September 15, 2025

Episode Overview

This episode focuses on empowering people with multiple sclerosis (MS) by discussing both evidence-based medical management and a toolkit of lifestyle changes that can improve everyday quality of life. Host Jon Strum welcomes Julie Polisena, who was diagnosed with MS in 2022 and has created a practical guide for positive lifestyle adaptations, openly sharing her journey and lessons learned.

Key Discussion Points & Insights

1. The Role of Disease Modifying Therapies (DMTs)

• Jon Strum explains:
  • DMTs are critical for delaying MS progression but aren’t primarily targeting symptom management.
  • Frustration happens when patients expect symptom relief and sometimes stop treatment if that doesn't occur.
  • He advocates for thinking beyond medication, highlighting lifestyle changes as equally meaningful.
    [00:18]

2. Latest Research on MS & Lifestyle Factors

• Diets & Evidence:

  • A Romanian study compared MS outcomes across diets (Mediterranean, Keto, Wahls, Swank, gluten-free, intermittent fasting). While no “MS diet” is universally proven, some show benefits in inflammation reduction, neuroprotection, and quality of life.
  • Key takeaway: The biggest challenge with any MS diet is maintaining consistent adherence.
    [01:53]

• Exercise:

  • Jon underscores that exercise has demonstrated benefits for people with MS at all levels of ability, reinforcing it as an essential pillar of lifestyle care.

3. Healthcare System Updates

• Pharmacy Benefit Managers (PBMs):

  • PBMs significantly affect drug pricing and access, often making MS treatment costlier and less accessible.
  • FTC and Congress are investigating, with possible reform ahead.
    [07:32]

• Advances in MS Treatments:

  • New trials for at-home, injectable forms of Briomvy could offer more convenience versus current hospital infusions.
    [09:32]
  • Ongoing research aims to promote remyelination (myelin repair), offering hope for functional recovery. Case Western researchers pinpointed a protein, SOX6, as a “brake” on myelin repair. Disabling it may help MS patients in the future.
    [11:03]

• Glutearimer Acetate Warning:

  • Health Canada warns of rare but severe anaphylactic reactions even after years on Copaxone or its generics.
    [14:08]

4. Introducing Julie Polisena: DIY MS Toolkit

• Julie’s blog post on the MS Canada website inspired Jon to invite her. She emphasizes that small, accessible changes can make a big difference.
  [16:58]

Interview with Julie Polisena

Julie's Diagnosis & Early Reactions

• Julie was officially diagnosed in 2022, after a decade of subtle symptoms (anxiety, bladder urgency, unilateral weakness).

• On her initial response:

  "No matter how much knowledge I had or thought I had about managing MS, the unknowns were still what scared me the most."
  (Julie, 18:22)

• Jon notes that “uncertainty” is the most deeply felt aspect among the MS community, not just the symptoms.
  (Jon, 19:13)

• On resilience:

  "You have a choice in life. You either cry or you laugh. And I try as much as possible to laugh... some days are good and some days not so good."
  (Julie, 20:13)

Biggest Lessons Learned

• Julie wishes she’d pushed her doctor harder for a diagnosis instead of accepting dismissals—emphasizing self-advocacy.
• It’s crucial not to see DMTs as the only tool: lifestyle adaptations are also important and can restore a sense of control.
  (Julie, 21:21–22:14)

Julie’s 8 Lifestyle Tips

(As outlined in her blog post and summarized here by her explanations. See 22:59–29:12)

1. General Physical Activity

• Not just structured exercise: “I prefer to clean the house myself ... for me it's a form of physical activity, a form of exercise ... I also use it as a test to see ... how am I feeling after.”
  (Julie, 23:40)

2. Adapting Activity to Mobility

• Even simple stretches on the couch are worthwhile:

  "Somebody may decide I'm not as physically mobile as I used to be... One could start by ... stretching their toes or their hands ... over time you will start to see some improvements."
  (Julie, 24:50)

3. Targeted Movements

• Focus on weaker muscles, possibly with a physiotherapist's help. For example, Julie practiced picking up a toothpick with a numb finger to improve fine motor skills.

  "After a few days, I noticed, okay, I'm getting it back ... I actually do check-ins with my toothpick."
  (Julie, 25:39–26:23)

4. Basic Nutrition

• While research is evolving, she stresses vitamin D and balanced nutrition, but cautions that evidence for “the one right diet” is still emerging.

5. Sleep Hygiene

• Establishing a bedtime routine: showering, light reading, meditation—acknowledging it’s trial and error.

6. Social Connection

• Julie voices the importance of supportive, judgment-free listening. Her friend Maria, also with MS, is a key confidante.

  "...we get each other. So it's not this blank look or this, 'Well, you look fine or things will be fine.' So it really, really helps to have that companion."
  (Julie, 29:12)

7. Self-Compassion & Acceptance

• Recognizing the unpredictable ups and downs, Julie intentionally practices self-kindness:

  "How you feel today won't necessarily predict how you're feeling tomorrow or the day after."
  (Julie, 20:13)

8. Setting Boundaries

• While community is important, so is taking space when needed:

  "It is also okay to set boundaries if you need some space. Again, that's also for me, another form of self care."
  (Julie, 32:50)

Coping with Setbacks and Progress

• Rest isn’t defeat; it’s part of self-care.
• Overcoming self-consciousness, especially about visible symptoms in public, is an ongoing process—accept that others aren’t watching you as closely as you might fear.
• Setting boundaries in social life is healthy and sometimes necessary for well-being.

Notable Quotes & Memorable Moments

• Jon on uncertainty as a MS “feature”:

  "...living with uncertainty is its own separate kind of a thing to have to get used to." (19:13)

• Julie on attitude:

  "...you have a choice in life. You either cry or you laugh. And I try as much as possible to laugh." (20:13)

• Julie on self-care:

  "Rest is also a form of self care." (31:29)

• Julie on friendship:

  "We get each other ... it's not this blank look or this, 'Well, you look fine.' ... it really, really helps to have that companion." (29:12)

Important Timestamps

| Topic | Timestamp | |-----------|---------------| | Research on MS diets | 01:53 | | PBM and drug pricing | 07:32 | | Briomvy at-home trial | 09:32 | | Myelin repair protein SOX6 | 11:03 | | Glutearimer acetate warning | 14:08 | | Introducing Julie & her blog | 16:58 | | Julie's MS experience & diagnosis | 17:30 | | Addressing uncertainty | 19:13 | | Self-advocacy in diagnosis | 21:21 | | Julie's lifestyle changes toolkit | 22:59 | | Social support and friendship | 29:12 | | Coping with setbacks and boundaries | 30:48–32:50 |

Resources

• Julie’s full blog post and lifestyle toolkit (“8 Lifestyle Changes That Improved My MS Journey”) is linked in the episode show notes for personal review.

Conclusion

Jon Strum closes by thanking Julie for her candid sharing and practical advice, highlighting that small steps in daily life can make a meaningful difference. Next week’s episode will feature nurse practitioner Erin Wilkinson on brain health strategies for MS.

For a deeper dive, listeners are encouraged to visit the provided links and episode show notes. This episode delivers not only news but also hope, empowerment, and an actionable roadmap for people living with MS and those supporting them.