Finally, a New Neurologist... And I am Psyched!

“Caroline,” he called.  “Caroline” 

He looked like the photo on his website.  

Wow, the doctor is calling me in for my exam.  

“I’m impressed by your service,” I said. 

“We do things differently,” Dr. Shubin replied. 

And, boy do they!  

Upon entering the office I could see plenty of MS information. I even found myself on their table!  

PBA - an effect from MS & emotional rollercoaster 
It all started with a frustrating doctor visit a couple of months ago.  My neurologist and I did not communicate well.  Feeling intimidated and second-guessed, I started doubting her expertise.  Not a good place to be. Years are gathering and I am getting older. Fears of what might happen with my MS are rising.  I was scared.  

But, not now.  

Just one doctor visit gave me so much confidence. He said there is a place I can go, Casa Colina, that is famous for rehab.  They even have driving machines to help you learn to drive again. Could you imagine?  Being able to just hop on the freeway and go where ever you wanted with out paying for a ride share?  Or bothering friends or family?  Imagine the freedom and independence. I’m tearing up just thinking about it.  

Dr. Shubin covered so much and gave a thorough exam. Despite the years of neurology appointments it’s been way too long since one has given me a proper exam.  Not since my diagnosing neuro retired.  

We talked about life, how MS is working, he made it so easy.  I am still in awe over the experience. I have had doctors tell me they don’t know what’s wrong because I don’t’ “present”.  

We talked about disease modifying treatments and opened the conversation for later discussed.  

Wow.  

About to meet my new Neurologist! 
Just feeling the love from his office.  It was the best experience since I was diagnosed.  The love and care is amazing.  The expertise and knowledge is utmost.  This is quality and I’m feeling even more ready to conquer MS.  

Join me in my battle.  Let’s conquer MS together!  



#takeTHATms!    

Talking High-Dose Biotin with Dr. Aaron Boster

I saw this great tweet by Dr. Aaron Boster the other day and I couldn’t stop laughing. 

Dr. Aaron Boster

Yes, this is what high-dose biotin can do.  What’s even better is what it can do for MS, at least for mine.  

My annual physical was coming up.  

I had one instruction:   Go off my high-dose biotin for a few days before blood work was done.  Last year my thyroid test showed a false result. 

Research has shown that high-dose biotin may provide a false positive result for the thyroid and it is suggested to go off the supplement for a few days to a week prior to the test.  

Many of you know that Myetin, a high-dose biotin with NAD+, has been part of my regime for about a year and a half now.  After taking it, I found that my energy increased and my pain and spasticity reduced.  It also seems to help keep my cog-fog at bay.  These are three things necessary for me to function at my best.  

Not as much hair as Dr. Boster, but it’s getting there!
But the fact was, I was scared to go off of my Myetin.  Everything has been working really well these last couple of years with regards to managing my MS symptoms.  I did not want to change a thing!  

What if I relapse? 

I was freaking out.  And I was traveling across country for a bunch of MS advocacy work.  I could not afford a relapse.  I couldn’t even afford to not be on my best game possible.  Due to some weird regulation I am not allowed to talk to my doctor outside of appointments and relaying messages via a nurse did not instill confidence in me.

So, stubbornly, I did not wash out the drug before my blood work.  

Interestingly the results showed normal thyroid activity this time.  



Enjoying life when I can. 
My interest was piqued. 

I spoke with the folks at Avior Nutritionals (maker of Myetin) and was informed that taking the supplement does not guarantee a false thyroid test but it can happen. 

Unfortunately my lack of conversations with my neurologist did not lead to confidence on my end.  So, I went to a leading expert on MS, the much-loved Aaron Boster, MD from Ohio.  

Dr. Boster is not familiar with Myetin, but as a practicing MS specialist is quite aware of the potential benefits of high-dose biotin.  

Boster, who has worked with thousands of MS patients in Ohio, has over 16,000 subscribers to his YouTube channel, and is quite active on social media.  His regular videos on MS are insightful and smart creating a great resource for those newly diagnosed and those living with MS for years.  




High-dose biotin is showing promise

“The preliminary research is so compelling that I will routinely recommend high-dose biotin,” Dr. Boster said. 

Benefits are showing potential in slowing disability in those with progressive MS, as well as slowing brain volume loss.  It may also have “re-myelinating potential. “These are very important things to do,” said Boster.  He further explained that high-dose biotin is a very safe compound to take and has not shown any risks to date.  

“There have been some large, properly designed clinical trials designed to answer the questions of the benefit and risks. But the jury is still out,” explains Boster, “the research needs to be replicated.” 

Clinical trial results pending  

A multi-campus clinical trial involving 642 people with MS is looking at the efficacy of MD1003, a form of high-dose biotin, in disability of those with progressive MS, especially gait issues. This double-blind study includes 92 facilities and recently wrapped up data-collection. Results will take time to process but I’ll share them when available. 

When I told Dr. Boster about my failure to comply, he expressed his concern. (Which is just what I needed!) He explained that thyroid tests use biotin in their assays, and by not washing out my system, I may not get honest results.  

We talked about the emotions of changing routines, fear of relapses and then focused on ways to gain confidence. The partnership between patients and doctor is vital in this confidence. I am grateful to Dr. Boster to be able to have this conversation.   

“I don't recommend high-dose biotin for everyone,” said Boster, “but if a patient is interested in preserving the brain reserve, managing brain-volume and slowing progression then it’s a conversation to be had.”



Not always easy, but I keep at it. 

Doctor Patient Partnership

This experience reminds me of the importance of a good working relationship between doctor and patient, a true partnership.  I obviously did not have one and have since found a new doctor.  I have not seen him yet but the MRI is scheduled and so is the neurology appointment.  I’m psyched.  

Thank you, Dr. Aaron Boster, for helping me better understand the potential for high-dose biotin. And the importance of having confidence in managing my MS with my neurologist.  

Thank you, Avior Nutritionals, for sponsoring this post and for supporting the work of those living with MS.  

Click Here for more information about Myetin (affiliate link)
#takeTHATms!   

Moving Forward with MS

I am blessed to share my MS story.  Please note this post represents my own opinions.

When MS first hit me, it hit hard and fast.  I couldn’t walk or see unassisted.

Today, I am thriving.

These last twenty years have been quite a journey, containing frustrations as well as accomplishments.

Flare-ups still occur and managing my MS is a full time job.  But, I have found some tips and tricks that can help everyone.

New MS Guide

AND, the National Multiple Sclerosis Society just released a comprehensive guide, “Now What? Resources to Keep You Moving Forward with MS,” which is amazing.  I sure wish it was around sooner!  But it’s here now and boy does it have some great tips.  No matter how long one has this illness, there is always something new to learn.  Growing and learning are all part of the moving forward process.



Creative Outlet

One suggestion the Society talks about is finding a creative outlet, such as painting, photography or writing.  This is so cool, because this is the path my life took without consciously knowing about.

My career as a business executive ended when I got sick.  Time to re-invent myself.  During this time I picked up a camera and started playing around.

Interestingly, this action made a HUGE difference with my MS.  The focus and attention required for the photography helped me forget about the MS.  The hand-eye coordination helped my brain and chasing wildlife made me smile.  Win-win in all areas.

My adventures led me to Africa and the Galápagos Islands, among other places.

These are some of my favorite photographs.  They are all a result of patience.  Waiting, being still and quiet, breathing deep, finger on the trigger ready to squeeze.

I swear, this saved me in so many ways!

In Ecuador atop Colorado 

Galápagos Islands: Patience for the Petrol 

Maasai in Tanzania: three planes and one relapse later... 

Tanzania: Fearing for their safety, the herd finally settled down just long enough to grab this shot.

If you would like to see more of my photographs please visit this link.

Moving Forward

In order to keep thriving it’s important to keep moving forward.  I still love photography but now I want to try something new. I’ve dabbled in drawing and painting so decided to try one those nice paint by number kits that are growing in popularity.

In fact, I am using this photograph of one of Darwin’s finches in the Galápagos Islands.  I am so excited. I’ll keep you posted on the progress!

Galápagos Islands: Female Cactus Finch
Thank you all for being such a wonderful support for me.  I’m excited to hear what you think about the new MS guide from the Society.  I’m finding it quite helpful!





#ThisisMS 

Me and My Cubii: a Convenient Exercise for MS.

On frequent occasion I am asked to review a product. They’re often sent or mailed and sometimes they are great and sometimes a flop.  

I was rushing through a bunch of emails one day and responded to an email from Dave at Cubii.  OK, Dave, sure, go ahead and send me your product.  I was moving so fast I never did prepare myself for what was to come. 

Well, a pretty hefty box was delivered to my front door.  Hmmmm.  I really didn’t remember it was coming.  

On the outside of the box was an image of a small stepping machine.  



My interest was piqued.  What is this and how could it help me? 

Intimidated at first, I walked around the box for several days.  

Then, one day when feeling especially strong and curious, I pulled the box out of the hall and into the familiar room.  And slowly I began to unbox the gift.  

I was expecting a much bigger project.  I’m still laughing at how easy it was to unpack and set up the Cubii.  

First of all, everything is simple, easy and well-marked. The box even comes with its own screwdriver.  

I don’t think it took even five minutes to put together.  

The Cubii is so easy to set up - Check me out:  





I’m not one for too many gadgets but for someone with balance issues and heat sensitivity, this little device came just in the nick of time.  In fact I was just grousing about the 90F weather and how I was needing some exercise.  

So, I plopped my bum down on a comfy chair and started walking away. Seemed like a great time to watch TV, so I turned on some cooking shows.  Oh, how I love my cooking shows!  

Ten minutes was done in no time.  Wow.  OK.  That was easy!   

I don’t have a desk that will work with the Cubii, because that would be cool.  Walking and writing at the same time without any chance of falling.  

My Cubii sits in front of a comfy chair in the den. I don’t spend much time there but it’s a nice space.  I can Cubii while watching TV, talking on the phone, playing games on my app or even reading.  The exercise is very gentle. When my legs are stronger, the tension can be increased to make a more rigorous workout.  For now, I’m into gentle.  

Interestingly, my knees felt great after this little workout. The angle seems quite beneficial to my weak and damaged joints. My core is also used while walking.  These pictures show it best: 


It’s super easy:     



I told my neurologist about it and she was psyched.  I am too!  

Now its a part of my morning routine.  Cup of decaf, some morning news and my Cubii.  Thank you, Dave, for reaching out to me!  I appreciate the sponsorship! 

For more information about Cubii click HERE.

COUPON:  for 10%OFF  use code:  GWMS10  good thru 12/31/19


This post was sponsored by Cubii. Thank you for helping those with MS live better!  


  

10 Ways You Can Prepare To Age Well With MS

By guest writer, Anita Fernandes.

Everyone has to make lifestyle changes as they age but for people with multiple sclerosis, this will mean a lot more adaptations and adjustments.
MS often causes “accelerated aging” where you need the kind of care given to people in their 70s while you are still in your 50s. Preparing to age well with MS will help you anticipate and overcome the challenges you will face so that you have a healthier and happier life. 
1. Create a daily routine 
Everyone should have a regular daily routine but when you have MS, your schedule is your best friend. Pushing yourself even slightly can cause fatigue so your daily schedule should focus on conserving energy. For instance, you can use a bath bench when showering so that you don’t get tired. Your morning routine is the most important as this will ensure that you are not too tired and have a better chance of having a good day. A regular routine also lowers your stress levels and improve your mood. Studies show that a positive mood is associated with decreased fatigue. 

Caroline @thegirlwithMs on one of her walks.
2. Learn to adapt 
One of the toughest things about living with MS is accepting that you have limitations. Most people see this as a loss of freedom and so they make choices that have a negative impacton their health. For instance, if heat aggravates your symptoms, you will have to say good bye to your weekly warm soaks. Instead, you can treat yourself to a massage which would be as relaxing and will help relax your muscles. Adaptability skills are very important as progression will bring with it new symptoms. 

3. Never skip your follow-ups 
You may have a lot of reasons to skip your medical appointment – you’re having trouble walking, you don’t have anyone to drive you to your appointment or you are just plain frustrated and fed up. Skipping your follow-ups will have a negative impact on your health and MS symptoms so this is one of those times when you need to force yourself to move. Contact your city office and find out if they offer free ride services for people with disabilities. 

4. Prepare for Progression
Hope for the best, prepare for the worst – cliché but true. One of the best ways to prepare for aging with MS is to prepare for progression. It’s never too early to start researching accessible housingassisted living and adaptive driving. Today, there areplenty of resources for information on aging with MS – everything from home care, transportation, in-home services, home modification and general legal services.

5. Learn to prioritize 
Living with MS requires you to focus on managing your symptoms and you might sacrifice activities that are “not essential” but improve your quality of life. Your health is a priority but hobbies and activities of interest are also important for your mental, emotional and physical well-being. Determine your priorities and then decide which tasks can be delegated to family, friends or helpers. Schedule your day so that you can perform important activities when your energy levels are highest. 

Caroline and Tim visiting the “Wall” at Reagan Library. Do what you can, when you can!

6. Start a health and wellness program early on
Health and wellness programs for people living with MS help people improve their mental and physical health. You can choose from a wide variety of adaptive exercise such as dance, aquatics and yoga. MS Focus offers several free classes or partial or full funding for gyms and wellness centers if required. Health and wellness programs help to reduce the stress and frustration with your limitations and instead appreciate all the things your body can do. 

7. Seek and Accept Help
People with MS are often embarrassed to ask for help and don’t want to impose on others. This is a huge mistake as it can severely impact your health and quality of life. Seek help and assistance as this will completely change your lifestyle and improve your mobility and freedom and allow you to enjoy a wider range of activities. 

8. Give back 
Living with MS requires help and assistance from family and friends. This can make you frustrated and guilty as you start to feel like a burden on your loved ones. Figure out ways in which you can help them as well as give back to your community. This will help you deal with negative thoughts and emotions and improve your self-worth. 

9. Work with a psychiatrist or psychologist
MS is associated with various psychiatric comorbidities including depression and anxiety. MS and mood disorders can cause a vicious cycle where MS leads to psychiatric comorbidities and these disorders have a negative neurologic impact. Working with these mental health professionals will help you learn new coping techniques to ensure good quality of life as you age.  

10. Keep a Positive Attitude
Living with MS means dealing with pain and frustration on a daily basis. Keeping a positive attitude when you have MS can be quite the challenge, especially on bad days. However, it is important that you don’t give in to negative emotions as this can lead to mental health issues. Your positive attitude will go a long way in helping you age well with MS. 
Simple steps like a regular diet, sleep and exercise schedule will help to alleviate your MS symptoms. When living with MS, it is important to work towards overall health and wellness as this will let you lead a more comfortable and happier life. 


That moment when I had to say hi to the beautiful and talented Jennifer Tilly.


Thank you @Everydayhealth for providing this wonderful article by guest writer, Anita Fernandes.  


Author Bio -Anita Fernandes has been writing extensively on health and wellness for over a decade. She has expertise in nutrition, fitness, public health, and weight loss and has contributed content to a variety of leading digital health publishers. Anita has a unique perspective on healthy living and lifestyle, as she has battled and overcome eating disorders and obesity. She shares her experiences in an effort to help others overcome the physical and mental health problems that can sometimes seem insurmountable. 

Brain Restoration, Sleeping with Sabrina and NAD+

2:07 AM and I’m wide awake.

Seems to be a trend for me lately. Sleep will happen, eventually, but at what cost to my health?  I’m ready for a change.

During one of my conversations with Stephen Camp, the founder of Avior Nutritionals, maker of Myetin, he brought up the concept of brain restoration.

Brain restoration?  We can restore our brains?  I love this concept!


Courtesy iStock

I definitely wanted to learn more.

So, he set up a meeting with a functional medicine specialist, Dana Leduff, CHC and practice manage for Dr. Knight at Knight Integrative Medicine.

Have you ever heard of NAD+?


I have heard mentions of it but really do not understand it fully.   I was psyched to learn how brains restore and what this means for us living with MS.

NAD+ levels decline as we age, or so the research indicates.  AND it is critical for cell generation and health.



“NAD+ creates calming neurotransmitters in your brain,” Leduff told me.   OK, my MS brain definitely needs calming.

I took this straight from the Wikipedia - “Nicotinamide adenine dinucleotide (NAD) is a cofactor found in all living cells. The compound is called a dinucleotide because it consists of two nucleotides joined through their phosphate groups. One nucleotide contains an adenine nucleobase and the other nicotinamide. Nicotinamide adenine dinucleotide exists in two forms: an oxidized and reduced form, abbreviated as NAD+ and NADH respectively.”

We are talking about the oxidized version, NAD+,in this article.  But what does this mean for me?

“NAD+ is a cofactor involved in the Kreb cycle.  It stimulates ATP which is the fuel equivalent that runs all of our cells,” Leduff explained, “NAD+ is a kick start for the engine.”

The Kreb Cycle is also known as the TCA cycle (tricarboxylic acid cycle).  It’s basically the chemical reactions to release stored energy through oxidation of acetyl-CoA derived from carbohydrates, proteins and fats into adenosine triphosphate (ATP) and carbon dioxide. It provides the process to make the fuel we need to run our engines. NAD+ is this fuel.

“It affects a lot of other metabolic pathways.  If depleted or burned through, adding NAD+ could help gain greater resilience,” she said, “We could have more stockpiled.”

“Imagine having a bad starter to your car,” she said.  Well, that’s easy to do!


“If you could take a product that could provide NAD+ it could help the Kreb cycle.”  Which in turns help the brain restore by helping mitochondria reach a healthier state.  

“An out-of-balance level of NAD+ may be a result from genes that don't make enough or don’t break down the macronutrients to pure NAD+,” Leduff informed me.  “When they become in balance it could create changes in circadian rhythm and sleeping patterns.”

Leduff further explained, “As in gardening, we need soil enriched with the right things.  In the human body, NAD+ provides the right fuel.  It turns a bunch of switches on that might have not been activated due to limited fuel.”

“We want to send as many healthy microbiomes to the brain,” informed Leduff as these could help restore the brain

Research claims benefits.


One interesting article I found was put out by the Translational Medicine of Aging.  The title hit a chord with me, “Therapeutic potential of boosting NAD+ in aging and age-related diseases discusses NAD+, it’s benefits and clinical usage.”

NAD+ is synthesized by natural NAD and several precursors.  Precursors have shown possible benefits in research.  But, “NAD+ in Myetin is the activated form of NAD+ which the body can use in its current form and is not affected by any genetic polymorphisms,” stated Leduff.

One precursor, NR, was found to be beneficial for glucose levels in diabetics.  In neurological diseases such as Parkinson’s it’s been shown to help memory, motor function and mitochondrial function as well as protect from neuronal cell death.

Another precursor, NAM, helps with oxidative stress and more:  In the model of obesity, it has able to restore glucagon storage to similar levels as age-matched standard-diet mice as well as ameliorate diet-induced hepatosteatosis, oxidative stress and inflammation.

The study found that inhibiting the age-related decline in NAD+ levels is critical for preventing age- or disease-related frailties. It also found that strategies that could potentially boost NAD+ levels include exercise, fasting, and maintaining a healthy diet, and by boosting with supplements.

But these precursors are not the same as NAD+,” Leduff explained.  “And there are many precursors available for sale.”

“Whenever claiming to be a particular molecule. We want a form that’s most bioavailable otherwise those genetic mutations could make  the process more sluggish or not happen at all so the body can’t benefit from it.

Leduff warns, “Many companies claim to have NAD but they are talking about “precursors” of some form.   Avior Nutritionals  has the only blend available that is the pure active form of NAD+.”

Leduff suggested that patients who want to find more personalized health plan, could find their answers in functional medicine.



Sleeping with Sabrina


After talking mitochondria a bit, I still wanted to learn more.  So, I connected with sleep specialist and certified brain fitness coach, Sabrina Cadini .

She does not have MS.

“I was sick and we couldn’t figure it out for a long time, so I decided to heal myself with self care, nutrition, sleep, etc.,” Sabrina said.   A familiar story to so many of us.

“I wanted to share my story and inspire others - switched to coaching. We need to educate people today that there are other options.”

What is a brain fitness coach?

“We help others take care of their brain before it’s too late.  We help with nutrition, exercise, sleep, and self-care.  Are they too stressed or do they need to enhance their brain function?” Explained Sabrina.    

“The body and brain are so tightly connected,” she said, “ For example, if people move the body releases hormones and detoxifies the body - it’s a chain reaction.  They don't realize how the body works and just follows the medicine prescribed.”  

Mitochondria


“I can’t say enough about mitochondria!” Shared Sabrina.

“These energy powerhouses are some of my best friends when I work with my clients. Considering that mitochondria can also help us with cell growth and the support of the nervous system, I can’t ignore their importance in my coaching practice.

“None of my clients knows about mitochondria, but when I explain the critical role of mitochondria as the source of our cellular energy, their view of everyday life and optimal lifestyle completely shifts. They feel more motivated to follow my program that focuses on nutrition, sleep, exercise, and stress management to improve their energy levels and overall health.

“Since mitochondria are directly connected to sleep and most specifically to our circadian rhythm, I always stress the importance of a good night’s sleep. If our circadian clock is impaired due to lack of sleep, or inconsistent sleep patterns, our energy production will decrease, and our overall health can be impacted: symptoms can include fatigue, pain, and susceptibility to illnesses. This, in turn, can negatively affect the circadian rhythm, creating a vicious cycle.


Circadian Rhythm 


“I’m also learning a lot about NAD+ and how mitochondrial dysfunction can result from declining NAD+ levels in our body. I have to say, I feel blessed to live in this era where science and genetics are making progress every day, and more and more research studies give hope to many people suffering from chronic and autoimmune diseases.




Sabrina suggests that once we understand our biological clock, it’s better to understand what we’re doing and going through.

Hormones with light and darkness really run the show. Melatonin night time.  Cortisol and adrenal during the day.

“Understand and take better care of yourself,” Dana recommends, “Be more respectful for sleep routine when the night comes.”


Sabrina’s Sleep Tips


“Unplug,” recommends Dana, “the use of technology is a big disrupter.”

“Watch the blue light  - the kind we absorb during the day via sunlight - but if we keep absorbing it then we can’t produce melatonin so it disrupts the circadian rhythm.”

Then, Sabrina gave me these great tips to help reset the circadian rhythm along with NAD+.

Sleep Tips 

1. Reduce blue light/devices
2. Software called Flux changes color of screen based on time zone to adjust/tint with red as the day progresses
3. Windows 10 on a PC?   Look for screen tint, regulated with red/blue light.
4. Rescue TV, devices, etc.
5. Put phone in airplane mode - reduced EMF (electromagnetic fields)
6. Swannies - Blue light blocker glasses
7. Keep room where you sleep as dark as possible.
8. Consistency is KEY -
1. Regular time to bed, regular sleep patterns
2. Do not catch up on sleep - “if it’s gone, it’s gone.”
9. Exercise can help sleep patterns.  Don’t exercise later in the evening as its stimulating and may cause problems falling asleep.
10. Caffeine - stop by 3pm - leave 6-8 hours before bedtime.
11. Napping - less than 30 minutes, or might enter deep sleep and feel more fatigued upon awaking
12. Relaxation techniques:  yoga, breathing, meditation.

I’m definitely beginning to understand better.

NAD+ is critical for our cells and fueling our brain and body.  It helps keep all those scientific parts in balance and the mitochondria healthy so it can send harmonious energy to the brain.  “Calming neurotransmitters,” Dana called them.

And understanding how the circadian rhythm plays a role sort of ties the whole brain/body connection together in one tight package.

Very curious for sure.  This NAD+ and its role in helping me sleep.   Self-care at its  finest.

Just one more way we can say #takeTHATms!


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. 



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!







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!