Girl with MS - Tips & Tools for Thriving with Multiple Sclerosis

Rocking New York City with Multiple Sclerosis!

I just made my first visit to New York City since 9/11.

Emotional, exhausting and empowering.

The multiple sclerosis was managed but it took hard work and plenty of preparation.

Final result: Live TV shows promoting brain-health and MS awareness.

Traveling with MS can be a nightmare, even with the best intentions.

Click HERE to see how I prepared

It’s best to have a well thought out plan “A”, knowing the whole time that most likely plan B, C or D might come into play.

We started off the trip with some MS advocacy work... my favorite! Celgene is introducing their new #MSmindshift initiative and I love it. Spot on. It’s all about brain-first thinking. MS affects the whole body but the damage is done in the brain and spinal cord. For now, I’m focusing on the brain.

My friend and fellow MS advocate, Cathy Chester (@CathyChes) was there along with her husband, Gary. Total blast. Laughter, fun, sillliness and seriousness filled our time.

Click Here for more information about MS MindShift and Brain First thinking.

Plan B it is

The plan was to spend the day in a hot air balloon. But, just as with MS, life is unpredictable. Especially the wind. So, Plan B it is.

And let’s just say that Plan B can often be total baller. Best not to have expectations for any of the plans because something really cool may just show up.

Today it was a private yacht trip to the Statue of Liberty. No one else on the water and the weather, while breezy, was gorgeous.

The next day was packed with a satellite media tour in the morning and then...ahhh...back to bed!

First morning was a 3AM wake up call. The next was 5AM and the next 4AM. After traveling cross country. Thankfully, we were on Alaska Air, which knows how to take care of their customers, especially those with MS.

The media tour was fun. I absolutely loved it - sharing my story to help others. I could do this all day long... well, maybe at least for a few hours. Here is my very first ever live TV interview chatting up about MS Mindshift, “brain-first” thinking and what its like to live with MS.

Click HERE for live TV interview with Caroline Craven, the GirlwithMS

I love what I do, and can do it because of my friends, support and especially because of Tim. He is attentive, caring and takes care of me better than I do. We all have our strengths. My forte is not taking care of myself. I have had to learn, train, practic and form healthy habits in many ways. Like, slowing down and taking breaks. Tim can see when my MS is acting up and will interfere so I don’t over do. He attentiveness is helping me stay focused on whats best for my MS.

Couldn’t do this without you, honey!

The tour of 9/11 brought about emotions not felt in over a decade. My MS was really bad when 9/11 occurred and the images from the original film footage came up like a splinter and stung hard. Vulnerable, raw, emotional, I was a mess. Snapping at Tim for no reason, except for feeling like a veal chop pounded wafer thin, ready for the broiler.

Then we toured the Empire State Building with Rubio, An informative, enthusiastic and passionate guide. AWESOME tour!

Click HERE to see how I prepared for NYC

And, HERE are my tips for traveling with MS:

1. Plan your trip. We studied the map and made general ideas of what we wanted to see. As the trip got closer certain reservations for tightened up. But within each day were hour long blocks of nothingness. Spots for rest, rejuvenation and restoration.

2. Prepare: I spent a week in Lake Arrowhead prior to NYC. This meant quiet time, me time and time to get my work done. No one else’s agenda mattered except mine. This is not easy to do but it worked out well for this trip.

I have a tendency to lose weight while traveling. This was never the case prior to MS. But now I need to calorie load beforehand. Especially for a trip like NYC which had long days and plenty of walking.

3. Wardrobe: Check out the weather and layout your wardrobe. With MS, especially in the warmer months, it’s important to dress in easy layers that can be shed as necessary. Even more important if you are a middle-aged woman. Organize outfits for each day and make notes of them. This can be so helpful when the MS blahs rear their ugly head during a trip.

4. Nutrition: Anti-inflammatory foods help me the most while traveling. Green tea, lots of water, lean proteins, cheese becasue I’m a cheesehead. And watch the dangers: too much salt, processed foods, quick fixes like caffeine and alcohol.

5. Check out my blog post about brain-restoration; Click HERE to learn a bout brain restoration, sleeping and MS

6. Most importantly - have fun and smile!

Even if youre tired as heck, try to find that smile deep within and share it with others. It’s contagious and viral in all the good ways.

We had the opportunity to see. Oklahoma! On Broadway thanks to Jamie DuMont and Rick

Miramontez. What a show. I am still smiling and dancing inside. Just what we needed to wrap up an amazing week in New York City.

We also got to meet up with my big brother, Bruce Craven, at Marea’s Restaurant. Bruce recently published his latest book, “Win or Die, Leadership Secrets from Game of Thrones.” I highly recommend it!

Remember guys - we’ve got this!

#takeTHATms!

CLICK HERE FOR MS on the NEWS!

Game of Thrones for MS

Well, it’s a wrap!

Our Game of Thrones party is in the books.

My brother, Bruce Craven, recently wrote the book, Win or Die: Leadership Skills from Game of Thrones.

Bruce is a professor at Columbia University as well as director of their executive education programs. Before graduating from Columbia with his MFA, he was a banana slug playing frisbee at UC Santa Cruz studying literature and political science.

He is in amazing big brother. Always there for his family and friends. One true gem of a man.

Containing many valuable tools, his book provides insight on the priorities people place on their values in chapter 2. This chapter resonated with me to the point that a change needed to be made.

Time to adapt!

As I try to balance my MS with my life, I find that the need to set boundaries becomes increasingly important to my health. But setting boundaries are not as easy as one might think. There are other people, emotions and feelings to consider.

When reading about values and priorities in Win or Die, it struck a chord.

While many of us may have the same values: ethics, honor, family, life, honesty, etc., we may value them differently causing discord in communications and expectations.

So my mind started wandering and created a priority of values that drive me.

My values and priorities:

1. Treat everyone as you would want to be treated. Smile at everyone. Make eye contact. Show respect.

2. Be resourceful and watch waste. Food is designed to be eaten, composted or shared with others. All of it. Respect the plastic - respect it man! Soil, water, sunshine. It’s all a blessing not to be taken for granted.

3. Take care of yourself. Eat well, exercise, enjoy the outside, smile at yourself and others. Own your health and own your excuses.

4. It’s not about the money.

5. It’s about sharing the love. Principles, lessons and such have their time in the sun. They will continue but let’s remember what’s important. Kindness and love to all.

6. It’s also about living a productive life, helping others, providing good services, being honest and upright.

7. Make smart choices with consumer dollars - do not expect laws to dictate what you purchase. Put your money in your beliefs.

8. Do not waste time. Time is the most valuable thing in my life. With it I can enjoy family, friends, nature, and helping others.

9. Create a safe place for you, your friends and family. Safety in expressing values, priorities and personal thoughts.

10. Take actions that result in smiles. Do not harm anyone or anything. Be kind.

What does this have to do with MS?

Oh, so very much.

By better understanding my priorities and those of others it makes life easier. It definitely makes boundaries more effective.

It all starts with communications. As we better understand ourselves, use these insight to help understand others better.

I never watched GOT until my brother was writing his book. But when I started, boy did I learn a lot.

“It’s what we learn after we think we know it all that counts,” says my former riding instructor, Jimmy Williams. And it resonates today.

Keep learning. Use it live a better life with MS.

And know that, we’ve got this guys!

#takeTHATms!

CLICK HERE to Purchase your copy of Win or Die.

I do make a very small affiliate fee for each purchase.

Clinical Trial Recruiting for Rehab in MS

Do you qualify for a clinical trial for MS?

Supervised vs Tele-rehab Exercise Program for People with MS (STEP for MS) is recruiting participants to study in person rehabilitation vs tele-rehabilitation exercise programs. The potential results could be a game changer for people with MS to exercise safely and effectively at home rather than struggle with travel to a center, visit costs and the other obstacles to in person therapy.

Click HERE for the study requirements.

Participants must live close to one of the study sites and fall within a specific EDSS range.

Demonstrating the value of in person exercise vs tele-rehab can impact access to care, including proof to payers of the value.

Click HERE to read a story that MS News Today published in January for STEP For MS that shares more information.

Criteria:

If you are between the ages of 18 and 65 years and you have Multiple Sclerosis you may qualify if you:

❖ Can walk but you have some difficulty, with or without a device

❖ Do not exercise regularly

❖ Have not had a relapse in the past month

❖ Can commit to train 2 times a week for 16 weeks

❖ Can drive to study site for assessments and potentially for exercise training

❖ Have reliable internet access

Seven study locations

Participants must be able to travel to site twice/week for 16 weeks:

➢ Shepherd Center, Atlanta, Georgia

➢ University of Georgia, Athens, Georgia

➢ University of North Carolina, Chapel Hill

➢ University of Alabama, Birmingham

➢ Cleveland Clinic, Cleveland, Ohio

➢ Marquette University, Milwaukee, Wisconson

➢ University of Colorado, Denver

Interview with Dr. Backus

“We are looking for 500 participants across all seven sites,” explained Deborah Backus, a well-known and highly respected researcher in the field of MS therapy, and is one of the STEP For MS principal investigators, along with Dr. Motl.

“They need to live within area of site in order to do assessment.”

The goal of the study is to disseminate info and share with those who are not close to MS centers.

“If we can show tele-rehab is just as effective as in a facility, then we have what we need to support those with MS, insurers, HCP, and break down barriers to accessibility,” Backus said.

Participants need to be able to walk but have problems walking. They should be slow on timed 25 foot walk test and currently not be exercising. Can be walking with a cane, walker, and limited but must go 25 feet. In terms of EDSS they are looking for scores between 4.5 - 6.5.

The process includes a phone interview, detailed questions and an initial screening process

The programme is two times per week for 16 weeks, with easy sessions taking 1-2 hours,

Participants will receive material on how to do the exercise and coaching sessions to start out then these sessions will dwindle down to create a self-sustainable program.

The trial will take a couple years to finish but Backus shared a recent success stories: “I fell and actually could get up,” said one participant. “I’m stronger and have created an exercise room to keep it up!” Interestingly, this participant was hesitant and didn’t want to continue the program. She is now!

Exercise intervention has been evaluated before - guidelines developed for people with MS. Dr. Robert Motl took these guidelines (GEMS) and combined them with behavioral coaching to create this program. Smaller trials saw its effectiveness and now researchers are doing a larger trial.

“All we want to do is help people,” stated Backus.

“If we can change EDSS and give them options to be healthier, this is going to make an IMPACT!”

“Patients will get stronger while building self-efficacy and confidence,” said Backus, “They will learn to overcome barriers of those with MS.”

For More Details and Contact info: https://www.iconquerms.org/swms-inclusion-requirements

MULTIPLE SCLEROSIS

EXERCISE RESEARCH STUDY

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)

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!.