I was just diagnosed with MS. Now what? Conquer MS with Self-Care

I needed this today.  Time to reNew You!  (Or me in this case).  Anyways I enjoyed reading through here and reminding myself what it means to do some Self-Care.   

New to MS?  or want to feel better with your existing MS?   Time to Conquer MS with Self-Care.

There is so much to cover with this title which is why my new book is in production!   But in the meantime take a look at these comments and tips.  Most tips below are linked to articles that I have written as a Patient Expert, Health Journalist and Life Coach.  Please click on the link to see studies, articles and more.  

Conquer MS with Self-Care


1.  Take a deep breath.  It will all be OK.  You are in for a change, but the levels vary for everyone.  Just know that things will get better and life will continue.  MS hits everyone different.  It will be important to be very compassionate toward yourself and your life as this disease unfolds.    

1.    Find a good neurologist – an MS specialist.
2.    Understand you are going through a change.
3.    Emotional balance may seem to slip away – seek help. 
4.    Talk with your MS Dr. regarding Disease Modifying Therapies (DMTs)more
5.    Love YourSelf!  Its good for MS!
6.  Check out My Favorite Resources Page - full of supplements that have worked for me.  I am not a doctor and these are affiliate links. But this routine has helped me for awhile now.  

2.  Modifiable risk factors:

MRF's are choices we have control over. Things we can start or quit depending upon our needs.  While none of these in particular cause MS, there is substantial proof that the following actions are beneficial for MS patients:

1.    If you smoke cigarettes, quit. 
2.    Reduce, respect or quit alcohol.  
3.    Limit salt intake.
4.    Reduce, respect or quit caffeine
5.    Do not use artificial sweeteners such as aspartame  (excitotoxins)
6.    Take additional Vitamin D(if low)
7.    Take Vitamin B12 (if low)
8.    Talk to your doctor about an NRF2 activator such as Protandim™ to fight oxidative stress. 
9.    Eat a healthy diet.  Nutrition is everything!
10.Eat a diet high in fish
11.Talk your doctor about Taking probiotics– health begins in our gut.  
14.High-dose biotin and potential for MS. My FAVORITE high dose biotin is Myetin.  Click to Order. (affiliate link)
15.Creating your own health:  using diet and nutrition to help MS

My FAVORITE probiotic:  VisBiome.





3.  Complementary therapies that might interest you:

3.   Massage




4.  You may find these fact-checked articles and “MS connections” interesting:

1.    MS and Epstein Barr Virus
2.    MS and antidepressant
3.    MS and decision-making
4.    MS and Sunshine
5.     MS and stem cell treatment
6.     MS and brain stimulation
7.     MS and horseback riding
8.     MS and laughter therapy
9.     MS and sense of smell
10.  MS and Exercise



5.   Life-skills.  Tips  and articles.  

1.    Connect socially at #BelongMS APP and reach a world of support. 
2.    Start a hand-written journal.  Handwriting is great therapy.  
3.    Build your support team.  Write down who is on your “Team”:  friends, family, doctors, pharmacist, nutritionist, massage therapist, yogi, God, whomever works for you. This list will grow and evolve during your MS.  
6.    Why me?  3steps to managing your angerwith MS.
7.    For better health, watch your words.  
8.    Can video games help MSsymptoms?  
9.    8 cooling and healing rituals for summer.
10.Get outside for 5 stress-busting exercises.  
11.Superhero saladrecipe for summer
12.3 recipesto help transition into spring. 





Contact me for any question!
and remember, together we've got this! 
 
Conquer MS with Self-Care


Girl with MS Support Group & BelongMS are here to help!

Help!   I definitely need extra support during these epic times.  How about you?  


As many of you know, my focus is Conquering MS with Self-Care.  Self-Care means a lot to different people but for me it represents a combination of awareness, education, action, and medical expertise.  As people living with MS, the need for social connection is essential in keeping us sane. At least it is for me!  


One of my most asked questions is “Do you use an app or other social media to help with your MS?” And the answer is Yes. 

I’ve used and tried different apps and social media outlets over the years and each has slightly different offerings and options.  After being shut down by facebook due to a hacker, (My story here) I knew I needed something more reliable.  

For my current life with MS, I have chosen BelongMS (part of Belong.life) to share my twenty years of experience to help others.   

We created a Girl with MS support group.  And it’s not just for girls. As a certified life  coach, nutritional educator, health journalist and someone living with MS for twenty years, we have stuff to talk about!  There are many tips and tricks and just over all support that will help us live better with MS. Will help us all say, #takeTHATms!  

  


And now we can chat directly via Belong.  Anyone with MS can join Belong and find tons of support, friendship, expert advise and even clinical trials. Once the Belong app is downloaded and you have registered (click here for app), then you can scroll down and see the different support groups.  Mine is circled below and is the Girl with MS.  Join me!  




The Girl with MS Channel is all about Self-Care.  We’ll talk about different ways to take care of ourselves, ways to find ourselves and ways to support each other.  



Because if I don't take care of myself, this is how I end up feeling:  

  

But when I do take those extra steps, those extra little measures to take care of myself like medical visits, and extra caution,



I can have days like this: 



I’m looking forward to “seeing” you on Belong and having a channel to talk directly with all of my MS friends out there.  If you already have Belong App, then look me up and let’s chat!   


MS is a challenge but together we’re stronger.  Together we can support ourselves with questions, answers, encouragement and laughter.  Together we can BELONG!    


And together we can say #takeTHATms! 



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, (makers of Myetin - a high dose biotin with NAD+), 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 manager 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. Reduce 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!


Conquer MS with Self-Care! Tips and tricks for surviving these Covid Times.

Tips for Surviving 2020 with MS


For nearly 20 years now I have been battling my multiple sclerosis (MS).  Good days, bad days, every which way days.  I’ve had them all.   

 

I could not walk or see unassisted when the MS struck me.  Now I’m thriving in my own MS way.  It’s not the life I was used to or expected for me, but you know what happens when we have too many “plans”.  Time to let go and let life plan itself. Time to move forward with MS.  My success has been based on a natural, holistic approach to living with a lot of monitoring and help from my doctors. Life skills and stress management have played major rolls in my success.

Times like these we can benefit from learning to move forward...read more

TiPS and TRiCKS to stay healthy and cool this Summer:

Importance of Making a Plan B

Escaping the Red Zone of MS

Cooling and Healing Tips for MS

Join GWMS on youtube 

Radio Show - Tips and Tricks for living better with MS

"I'm newly diagnosed with MS - now what?" 

 

MS Living Well Podcast 9: Cognition and Multiple Sclerosis

MAY 21, 2020

 

Barry Singer MD, Director of The MS Center for Innovations in Care interviews:
Caroline Craven aka The Girl with MS is a certified life coach, writer and motivation speaker. Her writing focuses on articles in health journalism and highly rated blog. Her blog post topics range from personal experiences, research-based articles, recipes, life hacks and resources.

Click For Apple Podcasts

Click For MS Living Well Podcast 
 

Dave Bexfield (ActiveMSers.org) along with Kathy Reagan Young (FUMSnow.com), Cathy Chester (anempoweredspirit.com) And many more saved this Girl with MS during some really dark times. And that was before Covid. We have so much love and support out there. Reach out and see what there is to learn. Click here to see the full list of helpers/advocates. We’ve got this!

 

 

The Rocky Ride of MS and What Helped

Multiple Sclerosis is like riding a roller coaster in so many ways. 

This past year has shown a lot of love for this Girl with MS.  Some symptoms subdued, others raised their voices.  But top on my list was meeting so many wonderful people living with MS across the country, in person and around the world via the internet and telephone.

Despite my good year and pleasant holiday, the MS reared its ugly head with a bad case of pseudo bulbar affect or PBA.  One minute laughing, the next in tears.  I just call it the funk.  And it got a holt of me bad the other day. 

The fact it's the end of the year caused a bit of the emotions. Focusing on what did not get done in 2019 led me down a path of quick depression.  Even healthy people have to give themselves a break, but the pressure and disappointment that one can put on themselves can be debilitating.  And that's where I found myself.  

You know what helped?  All of these MS advocates and friends Read more...

Football season is a coming, not sure what it will look like but I’m getting ready.  Love my Oregon Ducks and Puddles!  #takeTHATms!
Take the Self-Care Challenge! 

Self-Care is vital in our fight against MS.  What can we do for ourselves?  Life skills lead to better health. One of these skills is to learn to quiet the mind... read more

Potential natural treatments for MS 

Alternative Therapies for MS  

Why me?  managing anger in MS
 

Surviving the Covid Quarantine

Life as an MS patient brings enough uncertainty and stress. 
These last five months have created challenges upon challenges. But it’s also provided opportunities.  I started a sourdough starter as did many people. I can’t eat a lot of gluten as it affects my MS in a bad way but it’s been fun making stuff for the family.  More importantly is that I posted two great resources to learn more about living with MS during Covid.  One is by the awesome @CathyChes at The Empowered Spirt and the other by Dr. Terry Wahls and the Wahls Group.  Did you know that elderberry during this time may not be a good thing?  So much to learn....read more...


 
Take action to potentiate your wellness. 

Other natural treatments for MS symptoms.
 
Keep on Moving if and when you can! It took me awhile to build up my strength after some time off. And this heat will have me down for awhile, but enjoy the little moments and all achievements.  

10 Ways you Can Prepare to Age Well with MS
by guest writer Anita Fernandes

Conquer MS with Self-Care:  GUT HEALTH

Much research has been done regarding gut health and MS.  And let’s face it – our guts are not healthy!  When we take pills by swallowing they have to compete with every other bacteria in your stomach and gut.  This can be a detriment for folks living with MS.