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RealTalk MS
Episode 420: A DIY Kit for Improving Your MS Journey with Julie Polisena
00:34:51
Disease-modifying therapies are the cornerstone of MS treatment, but they're not the only piece of the puzzle. Beyond prescription medications, self-care that includes making healthy lifestyle choices can significantly improve your quality of life...
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- [00:01]
A
I'm john strum and this is real talk, mississippi.
- [00:18]
It's September 16th and we have a lot to talk about. If you're living with ms, evidence shows you should be on a disease modifying therapy. And I know some people get frustrated with their DMT because it doesn't do a good job of managing their Ms. Symptoms. And that even leads some of those folks to discontinue their disease modifying therapy because it, quote, unquote, isn't working well. Symptom management isn't the primary goal of disease modifying therapies. What they do is delay disease progression. They provide you with a better quality of life longer. But when we talk about improving the quality of life for people living with ms, we shouldn't limit the conversation to prescription medications. I always try to make sure we're also talking about the lifestyle changes that you can start making today that have also been shown to improve your quality of life. My guest, Julie Polysena was diagnosed with Ms. In 2022, and she's taken a very dedicated approach to making those lifestyle changes. In fact, Julie created a long list of lifestyle choices that someone with Ms. Might want to consider. I found her list on the Ms. Canada website and Julie's joining me today to talk about how her lifestyle choices have impacted her Ms. Journey and how they might impact yours. But before we get to my conversation with Julie Polysena, there are a few other things that you should know about.
- [01:53]
It's no secret that a lot of people living with Ms. Are interested in how diet impacts multiple sclerosis. And while there is no official Ms. Diet, social media is packed with posts proclaiming the benefits of one diet or another. So a research team in Romania analyzed the results from the published studies of all the popular diets that have, somewhere along the way been recommended to people with ms, including the Mediterranean diet, the Keto diet, the Wahls diet, the Swank diet, a gluten free diet, and intermittent fasting. And before I share the research team's summary of all these studies, I want to share a word of caution. These diets were not subjected to the same research methodology. Each study had its own criteria for who was recruited to participate. Each study had its own time frame, some much longer than others. Each study had its own participant reporting process. Each study had its own methodology. So you can't really compare the results of one study with the results of another. It's truly comparing apples and oranges. But you can, I think, consider the results from any one of the studies. Again, keeping in mind that a study's design can make all the difference when it comes to evaluating its outcome. Here are the outcomes noted by the researchers. The research team cited three studies that focused on the impact of a Mediterranean diet on people with relapsing remitting Ms. And people with secondary progressive Ms. And the outcomes of these studies showed that the Mediterranean diet lowered inflammation, increased bdnf, which stands for brain Derived Neurotrophic Factor, a protein that plays an important role in neuroprotection. The Mediterranean diet was shown to reduce disability as measured by edss, which stands for Expanded Disability Status Scale. It's a clinical tool used by neurologists to measure and categorize a level of neurological impairment in someone with multiple sclerosis. And the Mediterranean diet was also shown to improve the quality of life for people who adhered to the diet and adherence was also cited as one of the limitations of these studies. I think most of us know that it's hard to stay on any kind of a diet. Well, it turns out that's a challenge in research as well. And adherence to this diet varied, which makes drawing conclusions so much more difficult. There were also three studies focused on the ketogenic or keto diet, including a phase 2 clinical trial. All of the studies analyze the impact of this diet on people with relapsing remitting Ms. And the keto diet was shown to reduce inflammation, reduce fatigue, increase neuroprotection and increase mitochondrial function. Now, mitochondria provide the energy that lets a cell do its work. They have multiple roles including producing neurotransmitters. Now, the limitations associated with a keto diet include gastrointestinal issues, difficulty adhering to the diet and potential nutrient deficits. Two studies focused on the impact of the Wahls diet on people with relapsing remitting Ms. And the WAHLs diet was shown to reduce fatigue, improve mental health and increase nutrient density. Limitations focused on the highly restrictive nature of this diet and the risk of calcium and B12 deficiencies. Two studies also analyzed the impact of the Swank diet on people with relapsing remitting Ms. And the Swank diet was shown to reduce fatigue and slow disability progression. Limitations of the Swank diet included potential deficits in important nutrients and a vitamin D deficiency. A gluten free diet was analyzed in two studies that focused on the impact of this diet on people with relapsing remitting Ms. And a gluten free diet was shown to reduce possible inflammation. Limitations of this diet included fiber deficiency, the risk of weight gain and the lack of any evidence of benefit to people with Ms. Who did not have celiac disease. Intermittent fasting was a focus of three studies that looked at the impact of fasting on people with relapsing. Remitting Ms. And intermittent fasting was shown to reduce inflammation, increase BDNF and reduce fatigue. Limitations of intermittent fasting included the fact that it's difficult to sustain this practice. It's not appropriate for people with Ms. Who also have type 1 diabetes or or people with Ms. Who have eating disorders. The researchers also looked at previously published studies that analyzed the impact of exercise on Ms. And while the outcome of various studies seemed to be quite nuanced, the research all seems to point to the evidence based conclusion that exercise benefits everyone with Ms. At every level of ability. Now, if you'd like to review the details of this study, and there are a lot of details to review, you'll find that link in today's show. Notes.
- [07:33]
Plainly put, pharmacy benefit managers can present very significant obstacles when it comes to having access to disease modifying therapies or virtually any other prescription medication. The six largest PBMs control the price and availability of 94% of all all the prescription drugs in the United States. Now, last year the DFTC completed a two year investigation of pharmacy benefit managers. They found that between the years 2017 and 2022, the three largest pharmacy benefit managers generated $7.3 billion in revenue for their companies by marking up generic specialty drugs, including ms, disease modifying therapies by thousands of percent. Consider that for a moment. In just five years, these three companies that most people have never heard of, that operate with absolutely no oversight or accountability generated more than $7 billion in revenue for themselves by increasing the price of generic specialty drugs by thousands of percent. Well, the good news is the FTC has once again become interested in pharmacy benefit managers and is pursuing legal recourse against them. At the same time, the Chair of the House Oversight Committee has subpoenaed pharmacy benefit managers as part of a congressional investigation into their business practices. And it's probably worth pointing out that when it comes to creating regulations to help control these pharmacy benefit managers, that's one of the very few issues in Congress that seems to be receiving bipartisan support. So fingers crossed, things could be changing for the better.
- [09:32]
Pharmaceutical manufacturer TG Therapeutics has begun enrolling participants in a phase 3 clinical trial to test a version of Brie MV that can be injected subcutaneously at home. In 2022, the FDA approved BRIOMV as a disease modifying therapy for treating, relapsing, remitting M and active secondary progressive Ms. And the approved therapy is administered through an hour long intravenous infusion every six months. The formulation of Briomvy being tested in this clinical trial would be self administered at home by injection once every few months, so the potential convenience factor I think is obvious. The phase 3 clinical trial will compare two different dosing schedules for the subcutaneous version of Brianvi, comparing the safety and efficacy of an injection every eight weeks with the safety and efficacy of an injection every 12 weeks, and then comparing both dosing schedules with the safety and efficacy of the already approved intravenous treatment. TG Therapeutics, a company that manufactures Briomvy, is hoping that if the results of this trial are positive, they could receive FDA approval for the injectable form of Brienvy as early as 2028. We'll keep you posted as TG Therapeutics provides additional information about this clinical trial.
- [11:03]
Myelin repair or remyelination carries with it the promise of restoring physical function that's been lost to multiple sclerosis. And today there are several efforts underway to identify a path to successful myelin repair, many of which we've talked about on this podcast. Now, researchers at Case Western Reserve University have identified a new potential strategy for myelin repair. Now, the specialized cells that make myelin in the brain are called oligodendrocytes. It's a big word that you can think of simply as myelin making cells. And another thing about oligodendrocytes, they produce myelin when they mature. Also, these myelin making cells have some capacity to repair myelin. But in people living with ms, this ability to repair myelin is limited and eventually it stops completely. The research team identified a protein called SOX6 that helps to control which operations in a cell are turned on or off. And the researchers showed that during the development of these myelin making cells, it was this protein, REC6, that became active and turned on processes that kept those cells in an immature state. In other words, it kept them in a state where they were not able to make myelin. This mechanism normally helps to prevent these myelin making cells from producing myelin when it isn't needed. When the research team examined brain samples from people with Ms. And people without ms, they found that the myelin making cells, the oligodendrocytes in the brains of people with Ms. Showed signs of increased Sox 6 activity, which in turn prevented those myelin making cells from maturing and producing myelin. The researchers theorized that by blocking this Sox6 protein, those myelin making cells would mature and have the ability to do their job. Repair myelin As a proof of concept, the research team reduced the Sox 6 activity in healthy mice and as expected, their myelin making cells matured and myelin production increased. The takeaway for the research team was that in ms, these myelin producing cells aren't broken, they're only stalled. And it's the SOX6 protein that's applying the brakes. Developing a therapy that targets that protein releases the brakes, allowing the myelin producing cells to mature and produce myelin. We'll keep an eye on how this discovery may lead scientists to develop that therapy and what that could mean to people with Ms. In the meantime, if you'd like to review the details of this study, you'll find a link in today's show. Notes.
- [14:09]
Back in the mid-1990s, gluterimer acetate was one of the first Ms. Disease modifying therapies to receive FDA approval. And it's estimated that as of 2023, around 32,000 people living with Ms. In the United States were using glutearum or acetate, many using it under its brand name copaxone. So I think it's worth noting that Health Canada, the federal department responsible for setting public health policy in Canada, has issued a warning that gluterimer acetate may cause anaphylaxis, a severe allergic reaction that can be life threatening. Health Canada issued their warning after they received 11 reported cases of anaphylactic reactions to Copaxone and three anaphylactic reactions from generic forms of gluterimer acetate. Symptoms of anaphylaxis include difficulty breathing, swelling of the face or throat, dizziness or a rapid drop in blood pressure. These symptoms typically appear within an hour of receiving a gluterimer acetate injection. And what's notable about this situation is that this severe allergic reaction can occur at any any point during treatment, from the very first dose to months or even years after someone has been on this medication. Earlier this year in the United States, the FDA added its highest safety warning to the labels of gluterium or acetate products after identifying 82 cases of anaphylaxis worldwide. Now, if you'd like to review the details of that FDA warning, you'll find that link in today's show. Notes Things have changed a lot since the day when glutearum or acetate received FDA approval to treat Ms. Back in the mid-1990s, not only were there just three disease modifying therapies, but exercise was Discouraged. For people with ms, no one was paying much attention to nutrition. The good news is since then, scientists have learned so much more about Ms. Not only are there more than 20 disease modifying therapies approved to treat Ms. Today, but research has provided ample evidence that people living with Ms. Can make lifestyle choices that will absolutely have a positive impact on their quality of life. My guest Julie Polisana views that opportunity quite seriously and she's created quite a lengthy list of all the lifestyle changes someone with Ms. Can make today that will improve the quality of their Ms. Journey. In a moment, we'll meet my guest, Julie Polysena.
- [16:59]
I became aware of Julie Polysena when I read her blog post on the Ms. Canada website and I'll include a link to that post in today's show Notes. But Julie's post was all about making small changes that can have a big impact on your Ms. Journey. I'll let Julie explain all of that. So welcome to the podcast, Julie.
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B
Thank you, John, and thank you for having me. I'm very happy to be here.
- [17:24]
A
Well, let's for at least a moment or two, start at the beginning. Tell me, when were you diagnosed with MS?
- [17:31]
B
Well, John, I was diagnosed exactly three years ago in 2022. And looking back, I had real I realized that I had started to experience symptoms at least a decade earlier, yet I didn't fully understand what they meant at the time. There were signs.
- [17:54]
Sudden onset of anxiety, bladder urgency, and then they became more pronounced. And that's when I started to feel my right side feeling weaker than my left side, which impacted my mobility. And that was really, you know, the last big sign, if you want, of what my body was trying to tell me something.
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A
Well, 2022 wasn't very long ago. What went through your head when you heard your diagnosis?
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B
Well, when I first received the diagnosis, John, I was aware of the incredible progress that has been made in Ms. Treatments, and particularly treatments, you know, to help manage the.
- [18:38]
Inflammation. And so advances in medicine had given hope to many people with living with the condition. And I knew that the future didn't look as bleak as it once did with this diagnosis. But still, there was always, at the time when I was diagnosed, an overwhelming feeling of anxiety about what my life would be like moving forward. So no matter how much knowledge I had or thought I had about managing ms, the unknowns were still what scared me the most.
- [19:14]
A
It's interesting that you mentioned that a couple of days ago I was giving a talk about what Ms. Is and this was to people who have nothing to do with Ms. So they really didn't have any sort of framework or foundation to work with. And when I talked about some of the more common symptoms, I then said, and then there's the uncertainty, which may not be a symptom, but I tend to think that the people I often meet who are living with Ms. Tell me that that's the thing that stands out the most. So maybe not a symptom, maybe it's a feature of having ms, but living with uncertainty is its own separ kind of a thing to have to get used to. And I think people do. I think that's one of the reasons people with Ms. Find that they are among the most resilient people of all.
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B
Well, you have no choice, right? In the sense that you either. And I always, they always people when they meet me and you know, they learn about my condition, they'll say, wow, you seem so positive and so upbeat. I said, well, first of all, I know that the research is progressing and it continues to progress and the way we know Ms. Now how to treat it will probably even be different within five to ten years from now. But then there's the other aspect, John, where you have a choice in life. You either cry or you laugh. And I try as much as possible to laugh. I mean I'm not laughing at the disease, but have more of an upbeat approach and with the understanding and which I've accepted, some days are good and some days not so good. So one thing I learned is a lot about self compassion and how you feel today won't necessarily predict how you're feeling tomorrow or the day after.
- [21:12]
A
That's really a wonderful mindset to have. What do you think you've learned over the past three years that you wish you knew when you were first diagnosed?
- [21:21]
B
Well, the first thing, John, is that I know now, in hindsight, I should have been more insistent with my family doctor urging them to investigate the puzzling symptoms more thoroughly rather than being dismissed or just waving the hand saying oh it's nothing, it's nothing, or.
- [21:44]
Trying to find a simplified solution or rationale as to why I was experiencing the symptoms. And perhaps if I had been more insistent, I could have gained clarity earlier. So since then, one of the things I learned, or I vowed, is that now I'm going to advocate more for my medical care moving forward. Another thing, the second big lesson that I learned is that while, and this is during.
- [22:14]
2022 to now, is that while, while disease modifying therapies are in a very important component to your Ms. Treatment plan, There are additional tools that a patient, such as, you know, myself or other Ms. Patients can apply in their daily living that can improve your overall quality of life and as a result even give you more of a sense of control over your disease progress.
- [22:42]
A
And that really brings us to your blog post where you mentioned that you've made some lifestyle changes that have really improved how you manage your Ms. So tell me, what kinds of changes did you make and what kind of improvement have you observed?
- [22:59]
B
Right. So just for the listeners out there in the blog, I outlined eight tips to be exact, really, that affect our daily lives. That one can start small and just to, you know, as a disclaimer, one can start small and, you know, and that's the recommended approach. And what worked for me may not work for everybody, but I'll be happy to share with you what my tips were. So first thing is general physical activity that can include John, you know, yes, you may want to, you know, maybe depending on your mobility, join the gym or follow online fitness videos or even what I do a couple of times a week is I have a fitness trainer and we have a program that we, you know, we go through together. However, it's not just limited to one hour or two hours or three hours a week or however time you can dedicate, but also to your daily living, that is active living. So for example, I live in a two bedroom condo here in Ottawa, Canada. A number of people have come up to me and say, why don't you just hire a cleaner to come and clean your house once a week or maybe every two weeks? I think to myself, no, the reason I prefer to clean the house myself is because for me it's a form of physical activity, a form of exercise. In the back of my mind, I also use it as a test to see compared to last week or two weeks ago, how am I feeling after.
- [24:44]
I finished my house chores, for example.
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Just simple things.
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And one person, even stretching is important. Somebody may decide I'm not as physically mobile as I used to be, etc. And that's okay. One could start by maybe while they're watching TV or sitting on a sofa or whatnot, or talking to their, you know, their family members, slowly stretching their toes or their hands, you know. And then over time I, I promise the, you know, promise you that over time it may take days, it may take weeks, it may take months. It all depends. You will start to see some improvements. So consistency is key. Would you like me to just continue, John, or you have questions?
- [25:36]
A
Well, sure. Why don't you go ahead and mention a couple of more.
- [25:39]
B
Yeah. The other one that I think is as important is that as you know, Ms. Is a. They call it the snowflake disease. Right. Depending on where the lesions are located in the body, well, the symptoms may manifest differently or more severely or not and depending on the patient. So even doing targeted functional movements or exercises and stretches that focus on your weaker muscles can increase your strength, such as improving your balance, your gait, endurance. You can work with a physiotherapist. You can also either through the national society in the US or the Ms. Canada. They have plenty of online resources that one can follow to target their weaker muscles. And maybe I can give you one example that I experienced. So, you know, these targeted exercises don't need to be very elaborative or, you know, complex. So a few months ago, John, while I was preparing dinner for myself, I realized that the right on my, the forefinger on my right hand felt a little numb. And I thought, what can I do to help improve, reduce the numbness and hopefully improve the fine motor skill on that specific finger? So what I started to do is take a toothpick and place it either on my counter, different surfaces in my home and pick it up with my forefinger and thumb. And over time, after a few days, I noticed, okay, I'm getting it back, I'm getting it, you know, the numbness reduced. And from time to time, I actually do check ins with my toothpick to make sure that the fine motor skills is still there. And some of the tips. And I will, you know, just another disclaimer. Some of the tips in the.
- [27:46]
You know, in the list, they're, they're quite basic, but in part because, number one, I'm not a licensed doctor, this is based on my experience, but also when it comes to nutrition, for example, the evidence is still being produced. And it's. This is a quite new area, it seems, in Ms. Research about what are some foods or specific diets that a Ms. Patient may follow. And that's very personal. So, you know, so just to let you know, like vitamin D, we all know that's important.
- [28:21]
But then, you know, and sleep well, the, the tip that relates to sleep. I think even though a lot of Ms. Patients, you know, do have a hard time either falling asleep or staying asleep, there could be some tips that could help them. But the similar tips would also be applicable to the general public. Developing a bedtime routine like mine is take a shower before going to bed, do some light reading, meditate and what may work for one person may not necessarily work exactly for the other person.
- [28:57]
A
You also wrote that having someone who really understands what you're going through and listens without judgment has been one of the most uplifting parts of your Ms. Journey. I think you mentioned that person is your friend. Maria.
- [29:12]
B
Maria, yes. So Maria and I are actually very good friends and we actually met through mutual. A mutual colleague because she recently joined.
- [29:24]
My workplace department within the Canadian federal government. And you know, and this is how the friendship began. And since then, you know, we see each other on a regular basis. And while our symptoms are different or not exactly, you know, we're not exactly in the same spot. We still understand each other and we can also. And when I say listening without judgment, that's very key. But also listening, but having compassion, because I know what she's going through, you know, when she talks about some of the symptoms or when I talk about some of my symptoms, we get each other. So it's not this blank look or this, well, you look fine or things will be fine or, you know, so it really, really helps to have that companion. And I'm actually grateful that our colleague introduced us. Definitely.
- [30:20]
A
I want to remind our audience again that they'll find a link to your list in today's show notes. And you know, as you wrapped up your list, you wrote that progress will have its ups and downs, which is a natural part of the healing process. And I think you've reinforced that idea here during our conversation. That can sometimes be hard for people to keep top of mind. What helps you maintain that mindset?
- [30:49]
B
Well, a couple of things. On days where maybe you're not feeling so great, or in my case, maybe, you know, I'm limping a little or I don't feel as comfortable walking outdoors because we talked, you know, we were talking about earlier the psychological impact of having an illness. What I'm experiencing now and what I'm trying to work on, and it's slowly dissipating, is the feeling of self consciousness. Because that has an impact on your symptoms or can have an impact on your symptoms. But I know logically, John, that people aren't watching me 24 7, not when I'm walking down the street. If I have a limp or that's okay, it's not the end of the world. But I think one thing that I'm on days that I do feel, you know, maybe a little bit defeated, etcetera, is that I'll allow myself to have a rest that day because while physical activity and all that is important being consistent. It's okay if one or two days a week or sometimes you feel, you know, it's super humid outside. I know I'm, you know, I won't be able to walk, for example, or walk as well. Allow yourself that space to rest and just think about yourself like it's okay. And because rest is also a form of self care. And another thing which I do mention in my article or in the blog, which I think is also important, we talked about, you know, having my friend Maria, she's a great support and all that. And in general, yes, we are encouraged to have a social support network, so surrounding yourself with a supportive network is beneficial. However, it is also okay to set boundaries if you need some space. Again, that's also for me, another form of self care.
- [32:51]
A
Well, Julie Polisina, I want to thank you for sharing what I think is a great resource full of good information for anyone living with Ms. Who wants to know what they can start doing today that just may improve their quality of life and make their Ms. Journey a better one. And thanks so much for talking with me.
- [33:10]
B
No, thank you very much, John, and I appreciate you reaching out to me. This is great. Thank you.
- [33:17]
A
That's going to wrap up this episode of Real Talk. Ms. Real Talk, Mississippi is powered by the National Mississippi Society, and you can share this episode of the podcast by letting your friends or family members know that all they have to do is point their web browser@realtalkms.com 420. You'll find that link in today's show Notes, so you can easily copy and paste it right into an email or a text. Ms. Can affect cognitive functions like memory, attention and processing speed. So living with Ms. Means making brain health a priority. And there's a lot you can do to preserve and even improve your brain health. Next week, nurse practitioner Erin Wilkinson joins me to share proactive strategies that can help preserve cognitive function and quality of life. I hope you'll join me for my conversation with Aaron. I'm John Strum. Thanks for listening. Stay safe and make healthy choices.
- [34:40]
B
Sam.