MS Warrior Series- Shana Stern



This weeks warrior is the amazingly talented artist, Shana Stern. She took the BS MS threw at her and made something (a lot of phenomenal art) out of it. But there’s more to her than her art,  check out Shana’s story below and find out what she wants us all to know and remember.  Just a forewarning, you’ll start using it as your own mantra. 

To find out more about Shana please find a link to here social media below and if you have some time (if not, MAKE SOME) check out her artwork. 

You won’t be disappointed. 

  How do you describe/introduce yourself? 

I’m Shana Stern, I’m 49 & I’ve had RRMS since 1999.   I live in Los Angeles with my teenage son.   Prior to being diagnosed with MS I was a working screenwriter, married & enjoyed an active social life – as well as an active physical life -where I took 2 dance classes a day, 6 days a week.  Now I’m almost a shut in & I’ve lost the majority of my friends & my marriage.  I had to give up dancing and writing years ago which was incredibly hard.  That being said, I’m very fortunate in that I discovered a way to still be creative – via painting with my fingers – which has been a life-saver for me over the past 5 years.

Does MS take a front seat or backseat in your life? 

Now this is a tricky, tricky question to answer!

On days I’ve slept well & I don’t wake up with debilitating fatigue – MS takes a major backseat.  When I can exercise & fix myself healthy food – I’m in the drivers seat.  Same with if the temperature isn’t too hot or too cold.  But – if I’ve been on social media too much or been reading too much – my vision begins to act up & I will lose my sight for a couple of days, then MS flips to the front seat.   If I get a cold, allergies or high stress, MS is firmly in the drivers seat because those things trigger more symptoms.

When it’s hot & humid, I get millions of pins & needles in my face.  When it’s too cold, I get severe bone & nerve pain.   Also if my pain levels from my many injuries are high – these all cause MS to at least become a backseat driver.

I’m a fairly classic case in terms of every single day is different than the last and there’s no way to predict or control it.  That’s what’s so insidious about MS.

What keeps you going?

I’m a full custody, single mum so my son is 100% of what keeps me going.  I’m not sure what the state of my existence would be without him.

Do you challenge your doctor or take their word as gospel?

This is my 20th year having MS so I think it’s safe to say I don’t take any doctor as the end-all-be-all of information. My neurologist is a highly highly respected MS doctor, but there’s absolutely times I know she doesn’t quite “get” what it’s like for me every day.   I don’t think anyone who doesn’t have MS can truly grasp it. And because MS affects everyone so differently – even other MS’ers won’t get what others experience.   There’s people who have had it for years and still run marathons and barely require any medications.  Then there’s people who have had it less than a year who suddenly find themselves in a wheelchair. I do still feel like I have to defend myself to my doctors – especially when it’s about medications.  Which is a shame but unfortunately comes with the territory.

I don’t know how typical my attitude is with doctors – because I’ve had many surgeries, a multitude of health issues and I’ve been in physical therapy 3x a week for 5 years now – so I’ve had to become my own advocate and this is something that I feel would greatly benefit other people with MS to learn how to do for themselves sooner rather than later.  If you feel you aren’t getting the best care or aren’t being heard – find a new doctor.  If you are concerned about a medication – do your own research. Learn how to read MRI’s so you aren’t dependent on one person’s interpretations.  Speak with others who share similar symptoms to you. It’s your body.  It’s your life.  So ultimately the decisions are yours.   What’s right for me won’t be the same as you and vice versa.   But I think by advocating for yourself, you also give yourself the gift of re-claiming some of your power back.

What do you want/wish people knew about you?

I wish people knew that this is not a choice for me.  I lead a good, clean, honest and healthy life prior to my diagnosis.  I don’t want to be sick.  I don’t get anything positive from it.  And the costs, both financial & emotional – have been extraordinary.  I’ve tried everything in my power to re-gain health.  I’ve tried every alternative therapy out there.  And I mean every one – including going out of the country for stem cell therapy.  Positive thinking cannot control or change my symptoms.  I don’t have cognitive issues because I’m “tired”.   My debilitating fatigue can’t be changed by having coffee or trying harder to get a good night of sleep.   My nerve pain isn’t “all in” my “head”.

I also wish people knew that suffering is relative – so I don’t want people thinking they can’t talk to me about their lives or their heath or injuries.  Pain is pain.  Suffering is suffering.  I want to be treated as anyone else is and I want to be able to be supportive and empathetic to what my friends go through – because I’m actually quite good at it!

I want people to know when I do discuss MS, I’m not trying to garner pity.

And I want people to remember I’m still alive.  Still here.  And that I still yearn for friendship, relationships & getting to go out and do things.

To learn more about Shana check out the links below:



MS Warrior Series- Sophie


Meet Sophie, a woman who is #Goals. She lives abroad, and although she puts MS in the front seat her life, it is way more than it. Read below to find out more about Sophie, a woman after my own heart. 

                                   How do you describe yourself/ introduce yourself? 

Hi! My name’s Sophie and I have three homes – Sydney, Australia, Stockholm, Sweden and Yangon, Myanmar. I work in support of Myanmar’s peace and democratic transition, based in Sweden and with frequent and lengthy trips to Myanmar. I was born and raised in Sydney, Australia and I was diagnosed with highly active RRMS in September, 2017 at the age of 29.

 Does MS take a front seat or a backseat in your life? 

In terms of management, MS takes a front seat in my life because I think it’s my biggest chance at being able to keep doing what I love, whilst feeling well. Management includes following the OMS diet for me, even whilst traveling, exercising six times a week, sleeping 7 hours a night and stress management practices, such as meditation and yoga. It also includes six monthly infusions of Rituximab.

What keeps you going? 

My determination that this disease and all the symptoms it’s left me with are not going to stop me doing what I love.

Do you challenge your doctor or do you accept their word as gospel? 

Information is very comforting for me, so since day one I’ve had my head in medical journals, and my neurologists has been fantastic at meeting me during our conversations on the newest research and approaches. I was also diagnosed in Bangkok, Thailand and so have been lucky to have had the input of neurologists who treat patients without such a focus on drugs and a strong focus on lifestyle factors and meditation. I whole heartedly feel all decisions that have been made in my treatment course have been joint decisions and I’ve never agreed to any intervention unless I felt comfortable understanding that this was the best bet for me.

 What do you want people to know about you?

MS is a big part of my daily life and annual scheduling, but it’s just a part of my reality. The rest is far more interesting.

To find out more about this phenomenal woman follow her on instagram. See link below



MS Warrior Series – Katie Caputo


I met Katie Caputo on Instagram close to six months ago. The fire and strength that you hear in her voice in conversation, or  hear on her instagram stories is more than inspiring. Although recently diagnosed she hasn’t taken the news lying down  Read below to find out more about this incredible firecracker or a woman. 

How do you describe yourself? 


Does MS take a front seat or a backseat in your life? 

I’ve been diagnosed for 8 months now and I have to say it’s taken the front seat for the last 7/8 of them. In the beginning I was in and out of a flare up, and learning how to deal- and I still am, so everything that was in front of me wether it’s emotions or a new symptom, It was MS related. Now that I’m getting my “foot work” and learning what to expect, and having such a great support system – it’s kind of taken the back seat, especially because I feel good. When you feel good, you don’t think of the bad. 

What keeps you going? 

 Learning new things about the disease, and other warriors stories is what keeps me going. MS is such a wide spectrum as far as individuals and their symptoms. Every person is so different in their own way. No one is the same. And that blows my mind. How can we all have the same disease, and essentially, be all different? So the studies keep me going. The getting to know other people. But also, the fight in me.

Do you challenge your doctor or do you accept their word as gospel? 

I’ve been with my doctor for 11 years now. Longest relationship! I never used to challenge him UNTIL I started connecting with other warriors and friends in the MS society. Once I started finding out more info from others, I was curious, and would ask questions. I would ask about things that aren’t even up my alley yet. He knows I’m not MS’ing around, as no one should with their health, but I’m def the hard ass with him.               

What do you want or  wish people knew about you?

I used to HATE being home. Hate laying In bed on a day off. I don’t like to waste a minute of spare time. Now, my spare time, heck even most of my time is spent at home, in bed. My life changed; but I’m forever grateful. Sometimes I’m angry but I’m learning. I’m learning how strong my body was actually built, and what I was made for. And I won’t let it beat me. #DONTmsWITHCAPUTO

To continue being inspired by Katie or to learn more about her journey follow her on her instagram below: 


MS Warrior Series – Catherine Weston


Meet Catherine Weston. Her blog, Chronically Hungry, which is a mixture of her life, wellness and cooking is not only useful but motivating- seriously run, don’t walk to see what I mean. She’s been featured on the MSConnection blog and continues to bring MS awareness everyday on her Instagram. Check out her interview below and be sure to follow this hilarious lady on her social media outlets listed below.

  How do you describe yourself? 

I always introduce myself as Catherine or Cat as its convenient, but I always describe myself as energetic and optimistic, and super dorky 🤓. MS hasn’t changed who I am much aside from making me a lot more disciplined with my health and expressing gratitude on the daily.

       Does MS take a front seat or a backseat in your life? 

MS kinda rides in the middle seat for me 😂 it’s always there and my social profile is 100% dedicated to living with it, but I don’t talk about it much in my life because most of the time it doesn’t affect me too bad (knock on wood)! I’ll walk a little weird or get a little tired but nothing I can’t handle yet, and always preparing for the day I may need to take other measures.                                                     

 What keeps you going? 

A mixture of myself and my own aspirations for my life, my family and loved ones, and this amazing MS community keep me going. Having others who understand what’s it’s like tell me that my story and experience have made their lives easier or eased their mind is always so worth sharing what I go through 🧡                           

Do you challenge your doctor or do you accept their word as gospel? 

50/50, my previous neuro was so esteemed in the medical community and a little full of himself so it was near impossible to challenge him or even get a word in. I only just established care with a new doctor so seeing how the relationship plays out, as of now I’m only seeing her once a year.                           

        What do you wish people knew about you?

I wish people who know me from social media specifically, could see me for more than my illness. Making this profile mainly about that of course led to that result, and I love it, but I feel almost defined by it. I never want to be defined by MS – I want to grow with her, nurture her, and understand her to the best of my ability as she lives inside of me (uninvited 🤣). I wish people could better understand that this is an every day fight, and even when I look okay or say I feel great I’m definitely tired. I am definitely having cog fog. I am definitely experiencing SOME kind of symptom, so I just want patience, understanding, and forgiveness of my shortcomings. ♥️

To learn more about Cat, or to follow her journey see the links below:






MS Warrior Series Keyonna Renea


      I started following Keyonna on Instagram a little over a year ago and I instantly loved her spirit and transparency about her MS journey. Her IG handle is Diagnosed.Determine for goodness sake! This self proclaimed uber passionate creative focuses on the beauty of others, and focuses her energy on reminding them of the strength and power they have inside. She is truly remarkable. Please read the interview below and be sure to follow this amazing Warrior on all of her social media outlets listed below.


How do you describe yourself? 

I’m Keyonna Renea. Uber passionate Kansas City creative and event curator/organizer. I live to tell people’s stories and am often the glue of connection in many communities.

 Does MS take a front seat or a backseat in your life? 

Thiiiiisssss is such a weird question for me. I’m not sure how to answer except to say honestly I forget that “I have MS” until I remember lol. I live my life as optimistic as possible and take things day by day and sometimes moment by moment. I’m still trying to shape my new normal. It has a seat so to speak but it’s wherever I allow it to sit.

What keeps you going? 

Some days I have no clue lol. Steady progression to become my full self but to also share with others. Being stagnant is like a prison to me.

Do you challenge your doctor or do you accept their word as gospel? 

Challenge, challenge, challenge. I’m very curious and want to be educated every step of the way. All of my physicians to have be open and willing to take their time to have me as a patient because I need to know how and why everything works if there’s an answer to my questions or concerns. At the end of the day I know my body better than any book or data. I can’t walk into an office where the staff doesn’t want to be partners in my health care journey. I wasn’t always this way. Self advocacy is a habit I’ve had to learn over the years.

What do you want or  wish people knew about you?

I hear I’m a little mysterious which is odd because I consider myself to be an open book once you get to know me. I can come off very quiet and reserved at first but that’s because I’m listening…. I’ve always been a people watcher and student of human behavior. Don’t let any of that fool you tho I’m as silly as they come. I’ll talk about health, trauma, mental illness, happy hour, and dance a little all in the same conversation lol.

Also, I’m so passionate about health as a form of prevention rather than reacting to a diagnosis. On the flip side I exploring opportunities that will change the way we approach life after a diagnosis and the conversations around things that are mostly experienced in silence.

For more on the fabulous, vibrant and strong Keyona Renea follow her on the platforms below:




Can You Say That​ Again?

By now you might have seen or at least heard of the interview with fellow MS warrior Selma Blair this week. And while I, like I’m sure every other warrior, watched it about 10 times, cried with her, laughed with her, and understood exactly what she was going through. However, I stopped short when she put a name to the speech disorder she is currently dealing with, and I did some digging.

Spasmodic Dysphonia is a rare neurological disorder also known as laryngeal dystonia. This speech disorder is characterized by involuntary muscle spasms of the larynx or voice box. SD causes the voice to break or to have a tight strained or strangles quality and appears mostly in women and can appear between the ages of 20-50.[1]

Since the same muscles, structures and neural pathways are used for both speech and voice production SD is said to be a form of Dysarthria. Dysarthria is a speech disorder caused by neuromuscular impairment. This impairment can cause problems with articulation, speaking rate, and intelligibility.  MS-related dysarthria is more likely to affect your rate of speaking or conversational flow. [2]

Some  examples of Dysarthria include:

  1. Slurred Speech
  2. Scanning Speech or when you speak really slowly with long pauses between words and syllables of words
  3. “Explosive” speech with episodes of loud, rapid speech production.

There are three types of Dysarthria:

  1. Spastic Dysarthria- where experience muscle stiffness or tightness usually the voice is harsh and strained, speech is slow, and there is a reduction of loudness or mono-loudness
  2. Ataxic Dysarthria- where you experience loss of muscle movement or control usually the voice is tremored, speech is scanned, and there can be excess and variable loudness
  3. Mixed Dysarthria- a combination of Ataxic and Spastic

Dysarthria is caused by nerve damage and with MD or Mixed Dysarthria the nerve damage can include the brains white matter and/ or cerebellum, brainstem and or spinal cord. Mixed Dysarthria is the most common in people with MS. Why? Because MS affects multiple areas of your nervous system…Lucky us right?

So what can we do?

Although there are currently no cures for either Dysarthria or Dysphonia, a Speech Language Pathologist can help.

Depending on the type of Dysarthria experienced an SLP can help with exercises. Doctors are currently injecting Botox into one or both vocal folds for Dysphonia. The Botox weakens the muscles in the larynx causing the vocal cords from spasming.

With both speech disorders, a Speech Therapist can assist with helping with producing a better voice.


If you need help finding an SLP near you please visit Profind


[1] “Spasmodic Dysphonia” Accessed 28 Feb. 2019.

[2]”Dysphonia: A Speech- Related Symptom of MS”




Happy New Year! I know its February, but I’m just going to be honest with you. My new year started in February this year and I’m not mad about it.  Let’s talk about goals

Oh yeah, #Goals.

I’ve thought a lot about this although this year is a little different than most years- I usually have my goals at least thought about before the beginning of the year- but unfortunately this year I was a little stuck. When I asked myself what it was I wanted to accomplish I went blank. Like literally my mind was like a blank slate.

So I decided to start small, maybe I need to just look at how I can set goals around my health. As we know if we don’t have health we don’t have anything, right?

The question that came up was: How do you define wellness?

I think a lot of us can agree that it is a connection of mind body and soul. If that’s true what areas of your life can you work on to achieve an optimum goal of mind body and soul

  • Diet/ Exercise
  • Emotional Wellbeing
  • Spirituality
  • Cognitive Wellbeing
  • Work-life balance
  • Relationships

Now that you have that how can we make sure that we are accomplishing this goal?

I think we have all heard of SMART goals and while I agree with that system,  there is also the PAUSE system:

  • Plan your strategy – let’s make a plan plan
  • Account for change – don’t be afraid to go back to the drawing board
  • Understand your barriers – who, what, when, where
  • Slow your pace – it’s a marathon, not a race
  • Exercise your options – there’s more than one way to get home

Dealing with this illness I’ve learned to be agile, so I like that this system makes you think way outside the box, and I love the last bullet. “Exercise your options”.  Basically, there’s more than one way to get there, and if someone tells you differently tell them to kick rocks.

I encourage you to think about the different areas of your life and if you haven’t already make a goal on how to optimize one or all areas of it. Let’s make 2019 the best health year yet!

Whatever your goals are this year, if they are as big as biking the MS150 or as small as making sure your health team is connected- which is a feat in itself- just remember there’s no right way to reach your goal, its a marathon not a race. Breathe!

Happy 2019! Let’s crush it!

The D word

We MS’ers know the feeling… the sudden wave of anxiety, crazy bouts of insomnia, bone-crushing fatigue, and loss of energy that lasts for days. Difficulty concentrating or the inability to make a decision, the feeling of rage, the crushing feeling of our world closing in on us, or my personal favorite the feeling of hopelessness. That feeling of no matter what – this moment will, in fact, live on forever.  Your life will continue to be nothing more than waking up, taking pills, watching TV if your eyes will allow it, and going back to sleep. It will never get better is your thought.


These thoughts and feelings are common in the MS Community. It is said that the most common symptom of MS is depression, in its various forms.

And it’s not surprising, Multiple Sclerosis is one of the most debilitating diseases and the worst part is you never know when an attack is going to reveal itself. If your MonSter is anything like most, it comes to play at the most inopportune times.

Let me give you a recent example:

MS: Oh you’re planning to go out of the Country tomorrow? Cool! But first, let’s give you problems speaking, and walking.
Me: *heavy eye-roll* as I choke down steroids for what feels like the 100th time. Hoping I will regain my ability to speak and walk before my 17-hour flight.

Now, this example isn’t so horrible, but live this life long enough and scenarios like these can become downright miserable if you let it.

So what can we do? What can we do if we live this funk? If there isn’t any light at the end of the tunnel and no matter how much you love Grey’s Anatomy, if you see Meredith Grey ugly cry one more time you might just lose it, for various reasons?

I thought a lot about this and then decided to do some research.

These are the top 5* strategies (besides medication) I found for helping us beat depression:

1. Exercise: Even though it’s the last thing you want to do or feel like you can do its important. When you exercise your body releases a chemical called endorphins the endorphins make you feel better. No one is telling you, you have to run a marathon, even walking around your house once a day or doing little stretches as your watching a show or in bed can help you feel a little better.

2: Make a stress Management program – Try meditation, yoga or guided-imagery meditation.

3: Talk about your feelings – This might be a “duh” type of suggestion, but let’s be honest a lot of us most of us don’t do it. We’re too concerned about not wanting to bother our loved ones, thinking they/no one will understand, or maybe just not having the words. The thing is if we keep these thoughts/feelings bottled up inside its only a matter of time until we explode. If you don’t have someone to talk to reach out to the National Multiple Sclerosis Society, MSAA or join a support group of people who are going through the same thing you are. These three places will be skilled in helping you and will provide you with more resources to help you through this.

4: Commit to one activity each week: A friend of mine suggested I do this a few months ago. He suggested that I chose one thing to concentrate on a month, and every day tell myself “I will, I can, I must, XXX” The hope is the simple act of being accountable for doing one thing will make it easier for you to do more things, making the depression haze lighter, and giving you a feeling of purpose.

5: Create a gratitude list: By shifting your focus from the bad to the good, you will create a moment of pleasure. It can be a something as small as I took a shower today, or I left the house for 10 min and walked around the front porch. Both of these things are major accomplishments and should be celebrated.

Whatever you decide to do to try to kick depression is great, and should be celebrated!

Your life is too precious to feel this way

P.S. Another thing is to make it known to your health care professional that you are feeling this way. You might not even know you’re depressed. You might just feel down, or have minor feelings of agitation. Whatever the case may be it doesn’t hurt to bring it up. If you don’t feel comfortable talking to your doctor about these things or feel like he/she won’t be responsive, I urge you to find a new doctor if you can, it is so important for you to have a good relationship with you Dr. However, If finding a new doctor isn’t an option please reach out to the NMSS or MSAA for help. If you’re having thoughts of depression please reach out to the National Crisis Hotline

National MS Society: MS Navigator: 1.800.344.4867
MSAA: 1.800.967.0398
National Crisis Hotline: 1.800.273.825

SAMHSA National Hotline: 1.877.726.4727

For more ways to help cope with depression, click here

What About Kale?

After my diagnosis I like most of the MS population was put on a Disease Modifying Drug. My drug? Copaxone. It was good for a few months and then it wasn’t.  

Post diagnosis, like most people, I researched. I mean, I felt like I was back in school with the amount of researching I did. But this time it was different…I was researching for my life.

Why do I have to take these drugs? It’s a progressive disease. Why can’t I just pour coconut oil over this and prat it gets better. What about Kale?

Well after a few  months of being on the drugs and feeling like total crap I got desperate. I took all the research that I had done and decided that was it! I stopped the injections, bought the oils overhauled my kitchen and threw away everything that wasn’t “healthy”

Processed food? Gotta go.

Diary? Adios

Pork? See ya

There is currently a study that is being done at New York’s Mount Siani Hospital by Dr Iliana Katz Sand, where they are looking at how food might be the medicine to combat MS. This  new study uses the microbiome (a bacteria that lives in the digestive tract) and diet. Mostly they are trying to see if it is possible to reprogram the immune system to inadvertently slow down the immune systems attack on it self.

You might be thinking, well what about the meds? I hear you! I’m back on mine – not by choice. However it doesn’t hurt to put the facts out there. About 70% of the immune system is made up from the gut . So it only makes sense that what we feed it will have a direct impact on how we feel right?

So what are they eating? They are all following a strict Mediterranean style diet. Basically trading in the processed food, dairy and meat for fruits, veggies and whole grains.Why these foods? They are thought to be anti-inflammatory.

I’m not sure why this is such a new concept – the gut and how it affects the entire body, but it is, and the research and studies that are being produced are pretty incredible. The phrase you are what you eat is not just a saying any more folks!

For more information on this study and Dr. Katz Sand press here

I Should Write This Down…..

Brain fog, it’s one of the many amazing symptoms of MS, and it affects nearly all of those with this neurological disorder.

While there are great apps and strategies out there to help you with your memory, when the fog rolls in, it’s no picnic, pun intended. For those of you not familiar with Brain Fog, it can be described as an episode of mental confusion that comes without warning. It can be hard to focus, to recall memories and can cause a decrease in accuracy. [1]

I remember being at work and trying to explain a new procedure to a colleague. In the middle of explaining this new concept (that I came up with, mind you) I completely blanked out. It was as if I had the entire plan written on a white board and someone came and erased it right before I got to tell it! After about 5 15 minutes of trying to calm down and recollect my thoughts, I was able to tell them most of the plan,  but ultimately had to reschedule time with them to go over it again.

That fifteen minutes consisted of me breathing deeply and trying my hardest not to focus on what I was just talking about, or the lack thereof. Thankfully, the person I was meeting with was super understanding.

When MS is involved the cause of Brain Fog is said to be due to the loss of myelin sheath around the nerves. Without this protective layer the brain has difficulty with transporting memories to storage areas of the brain, or retrieving form storage areas. [2]

When MS is not a factor the following can be blamed



Lack of Sleep

Poor Nutrition


Nutritional Deficiencies


MS or not, either way I think that we can all agree that it sucks! So what can we do? I’ll tell you!

These are my top five tips for dealing with the fog…

  1. Take a break– most times if it comes on strong and fast you might be overwhelmed and get a little out of sorts- step away, stare at a wall, take a walk, whatever just stop trying to make yourself remember. Because news flash- you probably wont.
  2. Tell your Dr. – I admit it I’m not the best at telling my doctor like, anything. I’m the absolute worst. But when I do remember to tell him what’s going on he gives me a solution. Go figure!
  3. Exercise – Get physical. I don’t know what it is (probably Science) but whenever I work out, even if it’s for 20-30 min I feel better and the fog doesn’t come as much.
  4. Talk it Out- I remember when I was going through a lot of changes, the fog being one of them. I mean- I can be a little ditzy some times, we all can. But, when the fog came the first few times around I was like, um…so this is horrible. This needs to stop. I have shit to do! Mostly, I was just embarrassed. Finally, I talked to someone I trusted, who doesn’t even have MS, and just talking about it made me feel better. Like it somehow made it not such a big deal. So… talk it out!
  5. Mind games – Its like exercise for you brain. Seriously guys, keeping your mind sharp is the biggest way to help with this. So whether it is reading, using the an app like Luminosity, or doing crosswords, the more you can use your brain the better.

For more information on Brain Fog, check out the links below:



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