Hot Air Balloons, Brain-First and an MS Mindshift

I worked with Celgene Corporation to create this post

OK guys - I’m heading to NY next week to ride in a hot air balloon in the New York City area.  And I’m a little freaked out.  

In my life prior to Multiple Sclerosis (MS), heights didn’t bother me at all, nor did traveling or walking all over a city like NY.  But life with MS is a different story.  

A former rock climber, adventure racer, I am now petrified of heights.  Or at least scared.  I feel as if I’m going to spontaneously combust and end up over the edge.  I don't trust my body any more after the MS.  It has failed me too many times.  

But this isn’t the time to fail.  This is time to thrive!  

Tim and Caroline fly fishing the Los Angeles River

Time for an MS Mind Shift 

A cross country flight, days of fun and sightseeing, and of course the balloon.  Time to get my brain in gear!

So, with your help, I’m going up in a hot air balloon on May 21 in New Jersey near Liberty State Park courtesy of Celgene and their continued support of those with MS.  

And, I need your help!

Did you know that by taking care of our brain we can help our MS?

I’ve lived with MS since 2001 and never really understood the difference between white and gray matter, and what lesions really mean to me.  Until now!  

I have never seen such an explanation of the importance of brain health and MS.  

For example, “The brain is made up of two types of tissue: grey matter, which is where communication signals start, and white matter—which carries messages from one area to another. MS lesions occur in both of these areas and can lead to the symptoms you experience.”   

Well heck, that is a concept that can be understood.  

When your brain is healthy, the sky can be the limit

The MS MindShift website also recommends focusing on three areas:

1. What lifestyle choices can I make to help preserve my brain and its function? 

2. What can I do about other chronic conditions that may be influencing my MS?

3. What changes to my lifestyle can I make to help maintain my neurological reserve?  

They even have this handy list you can have emailed to you today or closer to the time of your next doctor’s appointment.  How cool is this?  

Dang...might need to steal this idea.  I’ve already downloaded and am using it to get ready for NYC!  

So far my list of action items include: 

• Meditation & quiet time

• Yoga

• Diet and Nutrition

• Sleep 

• Exercise

• Vitamin adherence

• Keeping up on tasks - making lists as needed.   

I am also reviewing my lifestyle.    

1). What bad habits have slipped in and need to be removed or tamed?    Some of these might include alcohol, tobacco, salt, processed foods, items that bring temporary joy but not many health benefits.  

2) What good habits have slipped away and need to be added and strengthened?  These help us to be strong, and once reintroduced can be easy to keep up:  walking, juicing, cleaner eating, more water, green tea, vitamin adherence.  

Does anyone else experience more fear since their MS?   And if so, what do you do to combat this fear?  

Thank you so much!  Together, we’ve got this. 

Send me your thoughts, ideas, encouragement.  I need them!       

#takeTHATms! 

Learning Leads to Advocacy - guest blog post

(Credit to MSFoundation who did the original print copy in their magazine MSFocus, winter 2019 issue) 

Learning Leads to Advocacy

By Laura Kolaczkowski

Hearing the words ‘you have multiple sclerosis’ makes us want to learn all we can, as fast as we can. When I encounter newly diagnosed people, the primary advice I like to share is to think of all the information about MS as a giant smorgasbord of food for thought. Just like those buffets we go to for real food, the selection of information can be tempting yet overwhelming. We want to consume it all, but it’s impossible to digest everything at once. Instead, we need to take small bits of information and process them before we return for more to build our knowledge of MS.

MS is a chronic, lifelong condition and the information we need to live better lives with this disease is going to be there as well. My advice is to take it slow and put on your plate only as much as you can digest before taking more. Bite-sized morsels of information won’t overwhelm you and can be quite satisfying.

Trying to understand test results, MRI reports, and all the other medical information we get from our clinicians can drive us crazy. If you have questions, ask your neurologist or MS nurse to explain those results. They went to school for decades studying MS, while most of us who have the disease didn’t do the same. I still struggle to understand the difference between B cells and T cells. Trust the experts to help us make sense of these results: that is part of their job. We also have to trust our own senses. If you feel like something is wrong, even when your test results show no change, speak up to your medical team. Don’t sit by wondering and worrying when you can be asking the experts.

This is your life and now MS is also part of it, but MS isn’t all you are. Be sure to keep balance in your life and spend time with family and friends, read a good book, indulge in a special food (my favorite is ice cream) or special drink occasionally. Treat yourself kindly – having MS isn’t something you did wrong and you aren’t responsible for being ill. Don’t beat yourself up – instead keep living your best life.

There is nothing more isolating than being alone with your own thoughts and a chronic disease like MS. As a person with MS, you have power. That power includes sharing your experiences with others in social media forums, running support groups in your own community for MS Focus, or joining patient-directed research groups such as iConquerMS. Find what ways you are comfortable in exerting your own power over MS and do it. Nothing feels better than connecting and letting MS know you are making a difference for yourself and others.

It’s important for everyone to know there are so many people on our side in this fight with MS. We begin with the million people with MS in the U.S. and even more worldwide, and then their support partners and families. Add to them clinicians (doctors, nurses, med assistants, etc.) and researchers and we have a mighty team. But we also need to remember the amazing work done by advocacy groups – such as MS Focus: The Multiple Sclerosis Foundation – and the resources they put into this fight. We may be the ones going toe-to-toe with MS, but when the going gets tough, we should not forget all these others who have our back.

Yes, I get angry when I read the profit reports from the MS pharmaceutical companies, and knowing what my insurance is charged for my disease-modifying therapies. But that anger is tempered more these days as I better understand the drug development and approval process; how many drugs never make it to the pharmacy yet are studied in trials for years; and what investments pharmaceutical companies put into treating MS, while financially supporting work to find a cure. The more advocacy work I do that involves the business side of MS, the greater appreciation I have for the need to educate everyone about the role of pharmaceutical companies as our allies and not view them exclusively as the enemy.

Never doubt we can all be advocates, we just do this work in different ways and some of us just get more public recognition than others. Advocacy and MS has many ways to play out. Each time we talk about MS to others, we are spreading awareness. Each time we connect with others living with MS, we are offering support. With every email, phone call, or tweet we direct to our elected officials about the need for healthcare for people with MS we are speaking up. All of these are critical advocacy roles and I am proud of all the advocates in my MS community.

Thank you Laura for this awesome post about making a difference and choosing to advocate for ourselves and others.  With everyone’s support, the sky is the limit! 

#takeTHATms!

Guest Blog Post: Dr. Terry Wahls - Your Bowels and Multiple Sclerosis

As many of you know, I am a big advocate of gut health for MS.  I've worked with Dr. Terry Wahls on several projects and am grateful to have her expert advise on the connection between gut microbiota, the brain and MS health.  I take a probiotic every morning and have tested my hut health.   Thank you Dr. Wahls for providing this insight! 

Your Bowels and Multiple Sclerosis

The microbiome impact on multiple sclerosis risk is a hot area of research these days.   The microbes living in and on our body have a major impact on our weight, mood, immunity, and even heart health!  If you want health – you need to cultivate a healthier microbiome.  The mix of species living in your bowels depends on many factors.  

Did you know your poop could be so valuable for keeping you healthy?

When we are born, we acquire bacteria from our mother as we pass through the birth canal. If we are born via C- section, we acquire bacteria from the hospital workers who help deliver us, and which bacteria we acquire can greatly influence our health. Children born via C-section are at a higher risk of developing obesity, mental health problems, asthma, allergies, and auto-immune problems.

There is growing evidence that the microbiome has a role to play in patients with multiple sclerosis. Those with MS have a different mix of species than those without MS.   Also, scientists can, by examining the mix of microbial species living in the stool, predict who is experiencing a flare of MS symptoms.

Severe constipation is a hallmark of having a problem with the microbiome, and constipation is a common problem for those with MS.   One of the best strategies to address constipation is to increase the fiber in the diet. This can be done by adding more non-starchy vegetables, fermented foods, salads, and raw vegetables and fruits.  We instruct our patients in our clinics and our clinical trials to monitor their bowel movement consistency and adjust their diet.  

Here are a few simple strategies that we teach our patients to begin shifting the mix of species living in their bowels.  

1.       Eat 6 to 9 cups of non-starchy vegetables and berries each day

2.       Eat fermented foods with every meal

3.       Ditch the sugar and replace dessert with fruit to top your meals

4.       Eliminate artificial sweeteners

5.       Add more fiber (such as a chia puddings, flax seed puddings) to have soft bowel movements each day.

Cultivating a healthier microbiome begins with eating more home-cooked meals.  

In my clinics at the Veteran Affairs hospital, many of our patients were on disability with limited financial means, plus they have either forgotten or never learned how to cook.  We spend time giving our patients cooking classes and teaching people how to save money by making meals that are both delicious and affordable. 

I do clinical research and study the impact of diet and lifestyle on multiple sclerosis related symptoms.   In our current clinical trial, we are comparing the low saturated fat diet to the low lectin version of the modified paleo diet (Wahls Elimination).  In this trial, we are collecting detailed information about what people are eating as well as stool samples so we will also be able to asses how the microbiome changes as they adopt the study's diets.

I have also written a book, The Wahls Protocol, which gives people the tools to reclaim their lives from the ravages of autoimmune problems like rheumatoid arthritis, psoriasis, multiple sclerosis and asthma.  In addition, I have written a cookbook, The Wahls Protocol Cooking for Life,to make it easier to learn how to cook at home. It is filled with strategies to make affordable meals, simply and quickly to get your life back on track.

Take action for a healthier gut.

If you want to learn more about the diet and lifestyle approaches I use to treat autoimmune, neurological, psychiatric, and other health conditions and the clinical trials that we conduct, visit www.terrywahls.com. If you want to dive deeply into the protocol that I use, consider attending The Wahls Protocol Seminar that I teach every July.   In the seminar, we teach people the skills they need to be more successful at adopting and sustaining the diet and lifestyle changes that restore health and vitality.  

Thank you, Dr. Wahls, for sharing this important information with us.  We appreciate all you do to help us say #takeTHATms!.  

Articles about Gut Health, Diet and MS: 

Plasma Cells in the Gut May Actually Help Fight MS

A Fish Diet May Help Reduce Risk of Multiple Sclerosis

Probiotics May Be Able to Help People with MS

How Eating Leafy Greens Can Help People With MS

Healthy Diet Can Reduce Disabilities Involving Multiple Sclerosis

Thank you Selma Blair - #YesWeCane

Dear Selma,

You are such  a trooper.

Showing up during a flare up and rocking the red carpet.  Total baller.  We love you Selma!

Folks may not realize just how important your decisions and actions are for us living with MS.  Sure, we’ve had many celebrities in the past tooting their MS horn.  And we’ve appreciated all of them.

But to see someone, living in a relapse, experiencing dysphonia and other MS symptoms, walk the red carpet during the 2019 Academy Awards Vanity Fair party is just the best ever.

And, what makes it even more special is your positive attitude.  Your neurologist said you have about a 90% chance to return to normal.  Stay positive and focused.

Everyone with MS responds differently to the disease and to treatments.

Seventeen years ago, I could not walk or see unassisted.  I looked like I had consumed several martinis by 8 AM.

But you know what?  After perseverance and taking care of myself, I have recovered from many of my earlier symptoms.   It’s not easy, this day to day management of MS, but its doable.

Be easy on yourself and be compassionate toward your MS.   Watch you diet and reduce modifiable risk factors.

Some of my tips for newly diagnosed are here:  Tips for Newly Diagnosed with MS

And most important - reach out and ask for help if you need it.  It’s so easy to isolate with MS, but today let’s focus on sharing our stories and using them to help others.

You, my dear, are a rockstar in so many ways.   Take care and know that there is an entire MS community here for you if you need us.

And remember, #yeswecane and  #takeTHATms!

Best wishes,

Caroline Craven
@thegirlwithMS

If you missed Selma Blair on the red carpet - check it out:

Seeking Experts and Finding Treatment Answers

This blog post is sponsored by Med-IQ- working together to improve the lives of those living with MS

Treating multiple sclerosis (MS) takes more than a drug.  It’s a lifestyle change combined with teamwork.  These changes have made a huge difference in my life and I feel this information can help you live better. By combining self-care with guidance from medical professionals, patients are finding better ways to manage their MS.  

Health care professionals provide medical advice and recommendations.  Self-care empowers patients by helping them take charge of their lifestyle.  

Having access to current research, scientific findings, and professional expertise can make a difference in how health care professionals treat their patients. 

This is one reason why I chose to work with Med-IQ, an accredited medical education company that provides an exceptional educational experience for physicians, nurses, pharmacists, other health care professionals.

The second reason is because Med-IQis helping share my stories with those that can help others - the health care professionals who treat patients on a regular basis.   

The more our medical team understands and knows what we are living with, the better they can serve and help those with MS live a better life.  

They know the medical tools.  We know our symptoms.  Together we can make a difference!

Symptoms Versus Disease

There is strong evidence that treating MS as early as possible has its benefits.   

Whether you are newly diagnosed or living with MS for years, the question about which treatment is best never ends.  

MS is a complicated illness.  There is the demyelination of the nerves and the symptoms that result from this nerve damage.  There is no cure.  

But MS is more than the disease.  The resulting symptoms can cause havoc on someone’s quality of life.  

Because of the loss of myelin, nerves short circuit and do not communicate as they should, resulting in a broad range of symptoms such as extreme fatigue, pain, spasms, numbness, tingling, cognitive issues, bladder problems, vision problems, and more.    

Doctors may prescribe a variety of drugs to prevent future occurrence of the symptoms and help you live better. But, many of these drugs have side effects or are not tolerated by some patients.  

DMT Basics 

Today there are 15 disease-modifying therapies (DMTs) for MS patients, varying from less aggressive forms to bulldogs that have hefty side effects.  They are FDA-approved, clinically tested treatments to help slow down the progression of the disease and its associated disabilities. But which one is right for you? 

DMTs are designed to reduce inflammation by using a variety of factors that affect the immune system.  The hope is for fewer relapses, less severe relapses, slower progression, and reduced disabilities.  DMTs are notdesigned for symptom management.   

DMTs are divided into categories based upon route of administration: injectables, oral drugs, those taken intravenously with an IV.  The drugs range from less aggressive drugs with fewer side effects to aggressive medicine with more risks.  

The 15 approved DMTs as listed on the National MS Society’s website: 

Injectable

• glatiramer acetate (Copaxone; 1996)
• glatiramer acetate (Glatopa; 2015; 2018) -- generic equivalent of Copaxone 20mg and 40mg doses
• glatiramer acetate (Glatiramer Acetate for Injection: 2017) - generic equivalent of Copaxone 20mg and 40mg doses
• interferon b-1a (Avonex; 1996)
• interferon b-1a (Rebif; 1998)
• interferon b-1b (Betaseron; 1993)
• interferon b-1b (Extavia; 2009)
• pegylated interferon b-1a (Plegridy; 2014)

Oral

• dimethyl fumarate (Tecfidera, 2013)
• fingolimod (Gilenya; 2010)
• teriflunomide (Aubagio; 2012)

Intravenous

• alemtuzumab (Lemtrada: 2014)
• mitoxantrone (Novantrone; 2000)
• natalizumab (Tysabri; 2006)
• ocrelizumab (Ocrevus, 2017)

You can find a list of these medications on the National MS Society’s website, as well as risk and safety information for each (DMTs). 

DMT Risks and Side Effects 

It is known that treating MS early and aggressively has its benefits.  But how aggressively should it be treated?  

With the increased amount of aggressive MS treatments come greater risks and side effects.  Liver damage, hair loss, and even death may occur.  

In order to best minimize risk while attacking MS, it’s necessary to be in open communication with your doctor and nurses about the medicine, your lifestyle, your habits, and the risks you are willing to take.  There are options.  

Three Habits of a Proactive MS Patient

These three habits can support you in managing your MS.

1.     Create open communication with yourself, your family/friends, and your doctor and care team.  

2.     Attend doctor appointments and use MRIs & other measurement tools to track disease activity.

3.     Practice self-care: Love yourself with healthy actions.

Open Communication

It’s crucial that you are able to talk comfortably with your health care providers to find the best combination of medicine and to help minimize risks.   
  

Do you drink?  Smoke? Take your medicine on a regular basis? 

Scary as it may seem, being honest with your doctor and care team will provide the best outcomes.  This will only come if you are honest with yourself.  

While advances in research are getting closer to finding targeted drugs for individuals, at this time it becomes a trial and error game.  And this can be difficult.  

Be patient and kind to yourself during this time.  Be open with yourself and your doctors.  Ask questions, be smart.  Together you will find the right solution!  

Self-Care 

Every person is different and reacts differently to medicine, but there are actions one can take to minimize MS symptoms naturally.  

This is time to bring in self-care.  While the DMT is fighting your disease, bring in your own actions to fight thebattle.  

Take control of what you can: eat healthy, stop smoking, exercise, and practice life skills to manage stress.  

MS patients have a harder time with their disease when other comorbidities occur, such as diabetes, obesity, and high blood pressure.  The better we can manage our own health, the better chance we have for controlling MS.  

Finding Quality of Life

MS is a manageable disease.  Through teamwork, honesty, and action, patients’ lives are fulfilled.  Quality of life is increased.  

Consult with your doctor.  Talk with family and friends.  And check out reliable sources of information like those listed below.  

And above all, know that you have this - that you are going to take action and do the best you can. 

That together, we are going to say, #takeTHATms!  

Resources

a.       US National Library of Medicine 

b.       Mayo Clinic 

c.       National Institute of Neurological Disorders and Stroke 
d.       National MS Society 

Take the Survey

Help us learn more about your experience with MS and working with your care team experience by taking this survey.  The survey, which includes more education on this topic, will take less than 15 minutes to complete. Survey responses are anonymous and will be shared only in aggregate.  Your responses to these survey questions will provide Med-IQ with important information about your experiences with MS treatment and your care team, which will help us develop future educational initiatives for doctors to improve MS care.

The survey, which includes further education on the topic, will take less than 15 minutes and upon completion, and you will be entered into a drawing to win 1 of 3 $100 VISA gift cards, with a total prize value of $300. 

The emails and names will only be used for awarding the winner.  They will not be kept!  

The information provided through this activity is for continuing education purposes only and is not meant to substitute for the independent medical judgment of a physician relative to diagnostic and treatment options of a specific patient’s medical condition.

Join the fun and #takeTHATms!

#multiplesclerosis #livebetter #spon #takeTHATms!

I was compensated by Med-IQ through commercial support from Genentech to write about MS.  All opinions are my own.