MS Warrior Series- Shana Stern

 

91D30570-DA66-474C-B02F-84D8A35B2622.jpeg

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:

Instagram 

Website 

MS Warrior Series- Sophie

409722D9-F3F2-41B3-9E2E-46C270955016

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

Instagram 

 

MS Warrior Series – Katie Caputo

39C63CD2-0188-4CAA-8279-7E66755E5E53

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? 

Katie

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: 

Instagram 

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” www.neurologyct.com/dysphonia.php Accessed 28 Feb. 2019.

[2]”Dysphonia: A Speech- Related Symptom of MS” www.Verywellhealth.com/dysphonia-and-ms-2440867

 

 

World MS Day

 Hello, and Happy World MS Day!

I figured that in honor of this day, I would share some of my favorite websites, people to follow, and activities in the Houston area. This amazing list has helped me navigate my life with MS – which I’ll be honest can sometimes be crazy, and not always in a good way.

So.. Without further ado my list, along with commentary, is below.

 

Ms Connection – Must have information

NMSS – Must have information

MSAA  – Must have information. I mean there’s a program that cover MRI’s, making them, like, free*… Do you know how much an MRI costs? Okay then, check it out!

Girl with MS – Natural healings

Paleobosslady – Natural healings

Tripping on air – Because I like to laugh, out loud

Stumblingprincess.com -Inspiration – she has MS and does cross fit – which I am mostly convinced is snake oil – but I mean… she’s got it going on!

The Mighty – Different stories from different people, you might cry.

MSFit – Lets get physical, physical… no snake oil here but you will walk out feeling like a badass. Okay!

HealGirl – This woman battles MS and fibromyalgia and is such a beast

 

And last but, not least Houston Self Help Support Group.

 

Dontmsmesgrland – Lead by Veronica Lewis Daniels – has great speakers and is always spreading knowledge that is so needed.

 

I hope this list helps you or a loved one. Lets keep spreading awareness and Kiss good-bye to MS!

*must qualify

A Special Thank You!

We at Dontmsme would like to give a very special THANK YOU to all who rode, donated, volunteered and supported the MS150 this year! Also, a Thank You to those who watched us on Periscope! I hope you enjoyed watching as much as we enjoyed filming.

We met so many amazing people along the way, and feel so very blessed that we were able to attend and do what we did. Riding has been firmly placed on our bucket list!!

If you weren’t able to watch us live, or would like to re live the moments you’re in luck! We put it all together for you in two nice little packages here  and here. Day one and Day two, just for you!

Be on the look out for more events to come, and definitely look out for us next year!! We plan to make this an annual thing!