What would you do with extra time each day?

“Thank you Avior Nutritionals for helping those living with MS find a higher level of wellness and for sponsoring this post.”  


An Open Letter to My Friends Living with MS

Caroline Craven - the Girl with MS


To my friends living with MS, 

What would you do with more time in the day?  Even 5 minutes? 

That’s what I’m asking myself now, almost every day.  

I used to rest and take naps in the afternoon.   I never scheduled anything after lunch.  Who knows how I would feel?  

But things are different now. I continue to take better care of myself.  Yoga, gentle living, and healthy eating are just a few things I focus on.  Going to the doctors and taking my vitamins are also kept up on a regular basis.  

And then, last spring, I added Myetin into the mix.  It has been a huge bonus in my life.  The spasms and pain have been greatly reduced.  But most impressive has been this new found energy.  

Myetin is a combination of high-dose biotin and NAD+ made by Avior Nutritionals.

I know that this post is sponsored by Avior Nutritionals, but I am writing from the heart to say that sure do wish I had started this supplement much earlier.   On a daily basis I am amazed at the level of my afternoon energy on any given day.  

Whale Watching Pacific Ocean
Everyone with MS is different. And I am not a medical professional. But, there is scientific research behind high dose biotin and its potential benefits for those living with MS. 

And dang, if they don’t taste great.   I’m grateful that I can’t overdose on them.  As I’ve said before, these are my Scooby snacks.  After my pills, and only after do I get to slowly dissolve my Myetin.  

Please consult your health care provider.  And as always, if you have any question at all, please feel free contact me online at GirlwithMS.com


I still have down days, where a rest is needed after lunch.  But these occurrences are scant compared to the past.  Lately my afternoons are spent with friends, puttering in the garden, cooking for the family or working on MS advocacy.  Wow.  
Enjoying Harvest Festival! 
It’s still a rare occasion that I plan anything too important in the afternoon.  But if it’s necessary I seem to be able to pull through.  

Never imagined this energy would return.  

Thank you Avior Nutritionals for all you do to say #takeTHATms!  

Best, 



Caroline Craven
@thegirlwithMS


This blog post created in partnership with Avior Nutritionals. 

Losing Touch, Finding Intimacy - repost from NY Times

Elizabeth Jameson, living with MS, wrote this most beautiful account of finding intamcy.  With her permission we are reposting to share with as many people as possible.  Thank you for helping us spread the word!    This is a REPRINT of NY Times Opinon with permission.

  
DISABILITY

Losing Touch, Finding Intimacy

I had come to believe I was unable to break through my physical disability. I was wrong.

By Elizabeth Jameson and Catherine Monahon
Ms. Jameson is a fine artist and writer living with multiple sclerosis. Ms. Monahon is an artist and writer.


Sept. 19, 2018

One of my oldest friends is here to visit. For as long as we’ve known each other, we’ve been in sync, weaving in and out of each other’s lives and reaching milestones together. We married our partners around the same time, went through law school and medical school at the same time, got pregnant with our sons in unison and lived as neighbors for years. Although we have visited each other frequently, time has slowly gotten away from us. I haven’t seen her in more than a year.

She gingerly lies down on the sofa while I sit nearby. She isn’t looking good. Thinner than I’ve ever seen her, weak and in pain. “How are you?” I ask.

“Well, I have cancer,” she says plainly. She changes the subject, not feeling the need to linger on her recent prognosis or to specify that it is terminal. All I want to do is hold her hand, rub her shoulders and tell her how much she means to me with a firm, loving touch. I stay distant from her, unable to move. I imagine stroking her hair or giving her a pillow to feel more comfortable, but I cannot do anything.

"Emerging"
by Elizabeth Jameson

Our conversation ebbs, flows, then trickles into silence; there is not much more to say.
She rests her hands on her stomach, where she holds the most pain. Five years ago, I would have bridged this silence with a gentle hug or touch. But I am stuck, immobile, unable to express my thoughts and feelings. I don’t allow myself to cry as we say our goodbyes.

When I lost the use of my hands, I lost my love language. I have multiple sclerosis, which has resulted in the loss of the use of my limbs. My disease progresses so slowly that I am caught by surprise when I can no longer do something. Little did I know I have been losing my range of motion by a fraction of a centimeter every day. Nerve by nerve, I lost the use of my legs, arms, wrists, hands, pointer finger, thumb.

I can’t tell you when exactly I became a quadriplegic, only that I know I am now a part of the club. My paralysis limits me down to my fingertips. I can’t operate my wheelchair, can’t hold a coffee cup, let alone someone’s hand — I can’t actively touch in any way. Like a fortress, my wheelchair is both impossible to leave and difficult to enter. If others want to reach out and touch me, it can be
intimidating to make the first move. It feels like there is a thick pane of glass separating me from the outside world, and because of my physical disability, I begin to believe that I am powerless to break through.

Over the years, I have tried to make a home out of my fortress, my glass bubble, uncomfortably settling into my grief. There are times when I feel connected to others, but in most situations, I become passive. I work hard to forget the joy of touching. I am a positive person, I tell myself, I can deal with this. I set up camp at the base of my Mount Everest and try not to glance up at what I am missing.But I feel the loss of touch as if it were a limb that has been severed from my body, an invisible, open wound I painstakingly cover up each day.

Lisa Jameson, artist, writer and living with MS

I am hyper‐aware of the moments when words are not enough. When touching someone’s hand is the only way I can truly communicate my feelings. When I can’t greet someone familiar by warmly placing my hand on their shoulder. Or when I know someone is sad, and it’s not appropriate to talk about what’s wrong; I can’t reassure them affectionately. It is like not being able to breathe. This loss, in combination with the guilt I feel when I grieve it, is overwhelming. I resign myself to the idea that I will never experience consensual, nourishing, intimate exchanges of touch in everyday life.

It is in this state of numbed resignation that an unexpected crack forms in the thick glass that has been separating me from “normal” people: A ray of light that reveals a world of intimacy I have been overlooking.

I am visiting with another friend at a coffee shop. My voice is weak and hard to hear in crowded spaces, so I use a voice amplifier. The amplifier has a microphone and a headset that make me look like an aerobics instructor who happens to be teaching in a wheelchair. I’ve got my headset in place, but when my friend leans in to hear me, it’s no use. My voice is too faint. I motion with my head toward the dial on the device, which can be turned up to make my voice louder. He tentatively discovers the dial, locking eyes with me to check the loudness of my voice. As I keep talking, he turns the dial up, then up and up some more until, yes, there, he can hear me. We nod and smile in unison, return to our conversation.

As he settles back into his chair, I feel lightheaded. By increasing the volume of my voice, he had turned up the very essence of “me.” The fact that he cared so much to hear me. That he took the time to learn how to connect with me.
I had rediscovered intimacy, without touch.

ORIGINAL ARTICLE

 My mind continued to reel long after we said our goodbyes. Maybe I can experience intimacy, I thought. It’s just that the language of it all has just changed. I had to redefine intimacy for myself. What is it, without touch? The freedom to express myself. The joy of being recognized, seen, accepted, equal. Letting my guard down, no longer burdened by society’s version of me, by my version of me. The feeling when the stigmas of disability and illness are lifted. I eyed my version of Mount Everest, thinking that maybe there was a way for me to fully rejoin the living.

After that day in the coffee shop, intimate moments emerged from the fabric of my everyday life. I began to notice how friends, loved ones and total strangers could make me feel visible and whole in completely mundane ways. Appreciating them took my breath away: that someone driving my wheelchair is making love to me, that someone kneeling to my eye level is giving me a gentle caress, that someone feeding me is a joint experience of pleasure and tenderness.

Within the mundane there are beautiful surprises, too. On a busy day, before work, my husband pauses his morning routine to make me a poached egg, his specialty. Something he wants to make for me — I didn’t ask. A friend tries to feed me a cookie. He does it “wrong” at first, but the process of figuring out the best way is like an intricate dance. Over the holidays, a family member puts on Handel’s “Messiah,” music that I love and everyone else in the family finds annoying. They usually refuse to put it on, but this morning they play it just for me, blasting it so that I can hear the music through my bedroom wall.

I savored these moments, and as I did I was propelled and empowered by them. I realized I could play an active role — I could give as well as receive. So I took my intimacy into my own hands, even though I am still grieving what I cannot do. I leave base camp behind and begin my slow, labored ascent; the fluid, open concept of intimacy spurs me onward.

I have always loved food. I muster the courage to ask someone to join me for a luxurious, two‐ hour pastry‐eating session. We take the time to savor every crumb of a single pastry, eating at the same pace together, and I feel honored, loved.

I start seeing myself in others: I am a part of a tribe. Wheelchair users, people with multiple sclerosis, the elderly with canes and walkers, people struggling with aphasia or spinal cord injury. The list goes on and on. We are everywhere. I lock eyes with a 90‐year‐old man in a crowded elevator. He tips his hat to me with a warm smile. I see a woman with a mobility aide in the street and we grin at each other, comrades. Neighbors. Strangers. Visible, invisible.

I poke fun at my own disability, creating humor where there was once shame. When I’m drinking water, I have no way to stop, so when someone cracks a joke I laugh and spit water down my front. It’s humiliating, but hysterically funny at the same time. I have a damp front more often than not.
I now know intimacy can be everywhere. Moments I’ve noticed, received, created. You and I are sharing an intimate moment right now — because if you’ve gotten this far without turning away, you are a part of that exclusive tribe of people who truly see me.

But eventually, my quest for intimacy brings me back to the beginning. To touch.
My good friend is back to visit. We are trying to see each other more often — with less time left, it’s only natural. She lies on the sofa, and I verbalize all that I kept inside last time — how badly I want to stroke her hair, squeeze her hand, sit next to her. She smiles appreciatively, but moves the conversation along, not one to linger in the spotlight. She directs the conversation back to me.

We talk a bit more, and emboldened by my confession, I ask her if she would take my hand, if it isn’t too painful to move. Slowly, she sits up, and my caregiver rolls my chair as close to her as possible. She extends her hand, resting it in mine. We look at each other and breathe.




Elizabeth Jameson (@jamesonfineart) is a fine artist, writer and former civil rights lawyer. Catherine Monahon (@cxmdesigns) is a mixed‐media artist and writer. She collaborates with Ms. Jameson on writing projects.

Disability is a series of essays, art and opinion by and about people living with disabilities. The entire series can be found here. To reach the editors or submit an essay for consideration, write opinionator@nytimes.com and include “Disability” in the subject field.

Follow The New York Times Opinion section on Facebook and Twitter (@NYTOpinion), and sign up for the Opinion Today newsletter.
4/4

I was just diagnosed with MS. Now what?

New to MS?  or want to feel better with your existing MS?   

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.  

Become an MS Warrior


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.  

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.    Take an NRF2 activatorsuch as Protandim™ to fight oxidative stress. 
9.    Eat a healthy diet.  Nutrition is everything!
10.Eat a diet high in fish
14.High-dose biotin and potential for MS. My FAVORITE high dose biotin is Myetin.  Click to Order. 
15.Creating your own health:  using diet and nutrition to help MS

My FAVORITE probiotic:  VisBiome.





3.  Alternative therapies that might interest you:

1.    Yoga
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.    Keep a health journal using Health Storylines APP
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!

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Guest Blog Post: Dr. Terry Wahls Recruiting for Diet Study


TWO MS DIET STUDIES are RECRUITING

MS Diet Study Research Opportunity Worldwide 
Many people with multiple sclerosis (MS) are very interested in dietary approaches to managing MS-related symptoms. 

Unfortunately, there is not a lot of research on which diet people should follow. Research has mostly focused on which supplements to take. Studying food choices and diet is much more complicated and equally as important. 



Right now there are two studies planned to examine if there specific diets that help reduce MS-related symptoms.

To find out the impact of specific diets, we need participants. Please consider enrolling in these two studies. 



  Dr. Terry Wahls  

1st STUDY:  Dietary Approaches to Treating MS-Related Fatigue 
Dr. Terry Wahls does clinical research at the University of Iowa, studying diet in the setting of multiple sclerosis. We are conducting an interventional study to understand how diet can affect fatigue. 

In our study we will be comparing the effectiveness of the low–saturated fat diet (Swank) and the modified Paleo (Wahls Elimination) for reducing the severity of MS-related fatigue symptoms and quality of life.   

The study lasts 36 weeks. We conduct baseline assessments and ask participants to continue eating their usual diet for 12 weeks, during which time there are repeat assessments. Then patients are randomized to one of the two study diets, trained on their assigned diet, and receive coaching calls to help them successfully adopt and sustain the study diet. There are repeat assessments 12 and 24 weeks later. 

We are currently recruiting participants and will continue recruiting through early 2019. Participants must have a diagnosis of relapsing-remitting MS, fatigue, and live within 500 miles of Iowa City, Iowa. This includes the states of Iowa, Illinois, Indiana, Missouri and Wisconsin, and parts of Arkansas, Kansas, Kentucky, Michigan, Minnesota, Nebraska, North Dakota, Ohio, Oklahoma, and Tennessee. 

Individuals interested in being considered for enrollment in this study may complete screening questionnaires and use code JMJPYEJHP. 

For questions, please email MSDietStudy@healthcare.uiowa.edu or call 319-384-5002.



2nd Study:  Complementary and Alternative Medicine in Multiple Sclerosis  
The second study is an observational study being conducted at Bastyr University for people with MS, optic neuritis, or clinically isolated syndrome. The survey asks participants about their diet, complementary and alternative medicine use, current symptoms, and quality of life. 


Participants are asked to complete surveys twice a year. Because it follows people over time, this study can also help answer questions about which diet is associated with better quality of life and fewer MS-related symptoms. 

Also, because this is a survey-only study, people can participate from all over the globe. You can learn more about this study and complete the surveys using this link.

Please consider participating in these important studies and encourage others to consider participating as well. Changing clinical practice so dietary advice is part of the care for people with MS requires research that asks the question, “Can diet reduce MS disease severity?”  

We have two studies asking that question. MS researchers from around the globe including myself and the MS community are anxiously awaiting the results from these studies. I hope you’ll consider participating. 

We’d love to include you!