Rosalie Richards
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 Reorienting—how I found my way after the MS diagnosis

10/29/2015

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NPR had a guest this week, a brilliant young man who was a junior at Harvard when a freak accident took out one eye.

Surprisingly, a lot depends on having two eyes.  We orient ourselves by the triangulation our brain makes when it receives two images (which we ‘see’ as one), one from each eye, each slightly differently placed in space than the other.  Our brain figures out where the object is in space through this triangulation.  This gives us depth perspective. 

He lost that.

He also lost peripheral vision in that eye, and found that he bumped into people unless he managed to place himself where the one working eye could do the side-seeing.

A funny thing happened, and it is a naturally occurring thing, he said.  His hearing began to take the place of the lost eye.  Through his hearing he began to be able to place objects in space, he could create a sort of depth perception.

It didn’t work perfectly, and he took himself out of society and gave himself a year in a cabin in the woods where he learned to reorient himself, and for him that meant not only connecting to nature, but also connecting to himself. 

His situation reminded me of my own entry into MS.

When I got the diagnosis of MS, I lost my way, I got disoriented.  This morning I tried to sketch a picture of me and my body (not perfect, but at least MS free) before the diagnosis.  What did I lose when I got that diagnosis?

I lost (said my sketch) two things—my public sense of self, largely based on my work, and I lost my sense of my body as strong and capable and able to get through anything including occasional forays of exhaustion fueled by junk food.  My self image  changed from seeming semi-invincible to being exposed and vulnerable.  I was in a tailspin and I didn’t know the answer.  I just knew I wanted out.

Moving on with the image of the man whose hearing began to give him a way to orient himself in space, what did I find?

What entered for me at first were stories and interactions with people who were living with MS in ways that made me know life continues, gives joy and contentment.  Hearing stories of people who kept living beyond their diagnosis of MS gave me a sense of depth.  I began to sense that it was possible that my life could reach beyond the diagnosis of MS to be something meaningful, good, maybe even nice (couldn’t imagine, better than that, my title lied, I didn’t think best was really on its way).

This was a new skill.  Turning to people outside of a handful of tried and true soul friends was new to me.  I have always been someone who, though I share with dear friends, pride myself on independence.  I can turn inward, I can find my own way, insights come to save the day, I don’t turn to other people until they have been proven over time and shared reflections—and I had always kept that number down.  Be friendly with everybody and share with only a select few.  That was my motto. 

When I first got the diagnosis and someone told me about MS support groups I had thought, “The Last thing I want is to talk to people with MS and be reminded that it is real, it is in my life!” 

To my surprise that changed.   It is fellow MSers who gave my life that depth perception that says that I am more than my diagnosis, that my future holds more—that my self definition includes my loves, my pleasures, my prayers, and also the pursuit of trivial fun.

What happened for me was that after MS came to me, I re-entered the world, humbled, needing the wisdom other people had garnered, the hope they personified for me, and though the road to finding my way took months of hard non-fun work, like the brilliant young man who lost his eye, hearing became my way of finding orientation when I partially lost my vision.
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There's More to the Story

10/22/2015

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Last week I visited with my new cat caregivers—they will board my cats while I’m gone for a few weeks, and I realized something about MS support groups. 

We talked about something that happened to their daughter years ago—a senseless murder. 
I had known a couple who went through that, around the same time, in the same city, New York, and I remembered how the couple had joined a support group for parents of children who have been killed—murdered.  I hadn’t imagined that there were enough people in this world, in that community, for a support group specifically for parents whose children had gone to the group for a while, but the subject never moved on.  ‘Maybe it is therapeutic for some people to keep talking about the shock and pain of losing a child in such a violent way,’ he said, ‘but after sharing the pain and bitterness and tears the first time, and the second and third meetings, I eventually wanted to move on with my life, and I never went back.’

His wife, who has an amazing active life, with theater, prison volunteering, friends, is the opposite.  She needs to work through the event in the company of fellow souls who walk that path.
​
I am like that husband, only my experience is about MS support groups, and I know I don’t speak for everybody.  I went to one for a year, helped co-host one for another year, but not just me, the majority of us wanted to live life outside of MS.  It is invaluable to know fellow journeyers, but the journey is more than that. 

That’s my take on it. 

Like my friend, who said the death of his daughter will always be a huge part of his heart and his story, MS is huge in my life—I plan around my ability to keep up the pace of traveling, I focus on walking with a week ankle and foot lift, but that can’t be the end of the story.  Where I am going, the people I share my walk with—this is the point of the story.

This morning I got up and thought about the blog, and I realize that for me the missing piece is this—there is More to the life story of each of us, and to not bring that up is to forget the point of our journeys. 

Next week, back to MS focused information, but this week is a celebration of More.
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Boosting Anecdotal Evidence for Exercise

10/15/2015

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I use anecdotal information to get inspired, that’s the first step.  To get into action I turn to studies, so that I get convinced that the success will apply to my own life.
 
Exercise and Mood  I want to pass on some information from studies on the effect of exercise and our mood.
Here is what I want to look at: 
1 Does exercise improve our mood
2 How does it work (using understandable English)
3 Who does this apply to
4 Are there specific exercises that target mood
5 How long and how often do we need to exercise to get this particular benefit
 
 
1 Does exercise improve our mood? 
A review of studies stretching  back to 1981 concluded that regular exercise can improve mood in people with mild to moderate depression, and it may help in treating severe depression (1).  A Mayo Clinic paper calls exercise meditation in motion.  It goes on to say that it can increase self-confidence, relax us, lower symptoms associated with mild depression and anxiety and can improve our sleep (5).  Another review says that most studies suggest that exercise and physical activity are associated with a better quality of life (6).
 
2 How does it work?  
Exercise enhances the action of endorphins, chemicals that circulate through the body, to boost natural immunity and reduce the perception of pain and improve mood (1).  Endorphins are called our brains’ feel-good neurotransmitters(5).  Another theory is that exercise stimulates the neurotransmitter norepinephrine, which may directly improve mood(1).
Another viewpoint:  exercise helps improve our mood by boosting our minds.  One study finds that exercise improves mental health by reducing anxiety, depression and negative mood by improving self-esteem and cognitive function(4).
 
 
3 Who does this apply to?
The findings apply to all of us.
The evidence for the mood-boosting quality of exercise comes from a broad cross section of people, from experimental as well as population-based correlation studies(2).  Both cross-sectional and longitudinal studies as well as randomized clinical studies have been reviewed, including diverse ethnic populations, men and women and also several age groups, including adolescents, middle-aged and older adults(6). 
 
4  Are there specific exercises that target mood?
Studies vary on this point.  Some say that any form of exercise can help depression(3), others that any form of exercise, from aerobics to yoga, can act as a stress reliever(5).  Others state that the following exercises have been proven to reduce anxiety and depression:  aerobic, jogging, swimming, cycling, walking, gardening and dancing(4).
 
5 How long and how often do we need to exercise to get this benefit?
One study suggests that 20 to 30 minutes, 3 times a week eases depression, and 4 or 5 times a week has even better results(3).  Another study says that within five minutes after moderate exercise we usually get a mood-enhancement effect(2). 
The effects of physical activity extend beyond the short-term.  Research shows that exercise can also help alleviate long-term depression(2). 
 
Note:  The studies mentioned above only relate to our mood and exercise.  Next week I will look at exercise and cognitive enhancement.  Who doesn’t want a beautiful brain? 
 
 
References cited--
 
(1) www.health.harvard.edu/UD
(2) http://www.apa.org/monitor/2011/12/exercise.aspx
(3) http://www.webmd.com/depression/guide/exercise-depression
(4) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1470658/#i1523-5998-8-2-106-b3
(5) http://www.mayoclinic.org/diseases-conditions/depression/in-depth/depression-and-exercise/art-20046495
(6) http://journals.lww.com/co-psychiatry/Abstract/2005/03000/Exercise_and_well_being__a_review_of_mental_and.13.aspx
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Helping Symptoms Out:  the Big Three—anecdotal evidence

10/8/2015

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There are theories about symptom reduction—hard to prove because MS is a unique creature, unique in each one of us, like our thumbprint.  What works for me,  what is true for me, may very well not be true for my friend who has MS. 
But—that doesn’t mean that what works for my friend won’t work for me, and so anecdotal evidence, stories we share, are savored and remembered and often acted on.
MY TRINITY OF SYMPTOM REDUCTION           
Today I’m going to share my own anecdotal evidence for symptom reduction.
For me the benefits of diet, exercise and de-stressing are huge. 
De-stress  The word doesn’t do justice to living serenity, but it is a great first step.  Taking life in deep breaths, one person calls it.  Positivity is how DDP Yoga lives it.  These and more are part of what makes this step.
Diet changed my symptoms when I first was dealing with MS.  I read an inspiring book, The MS Recovery Diet, took it literally, and combined that with yoga.  Pains went away and movements became more fluid.  I had never considered organic or clean eating before MS, and now it is part of life (yes, I take a break into sweets and treats!  I am not an absolutist). 
Exercise took a front seat in my regimen when I started working on a book about MS and exercise.  First, you can’t easily extoll the benefits of exercise if you are a couch potato, so this in itself got me up and away from the computer many days.  Second, a trainer took me in hand.  She had me do things I wouldn’t have chosen or thought of—not hard, just different muscles doing different things—and one day I found I could run again!  I call it the MS jog; it includes my limping left leg, but it is Not walking, and I’m thrilled.
Because of these 3 approaches I’m making plans to do a week on the Camino Santiago, a walking meditative pilgrimage that draws over 200,000 people each year.  I will be one of them!  When I moved to New Hampshire in 2011, having just been firmly diagnosed, I never considered the possibility of walking over two miles a day, much less the Camino. 
The studies can’t rely on anecdotal evidence, because just because something worked for one person can’t be applied to the rest of the people in that category.  But stories are what inspire us, move us, give us the energy to try things, test them on our own MS.  My anecdotal evidence joins the narratives of other people walking the MS walk.  These stories that inspired me to try the Big Three that make The difference in my MS.
 
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WHY WHAT AND WHEN

10/1/2015

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MS  ONE JOURNEY
 
THE GOAL OF THIS BLOG I love sharing stories about MS and since it is a large part of my story, I have applied whatever I learned from school (social work, divinity, public health) to learning about ways to live successfully without letting MS take over, and also to learn about ways to give my body more of an edge in health.  That’s the main point of this blog—to share what I am learning, what I am experiencing, to give my story to fellow journeyers—we all have something, some of us have MS and some of us live with other challenges—and if my story and learnings resonate with your life, that’s great.
WHAT I HAVE LEARNED SO FAR  My books tell a lot of the story—Beyond MS Your Best Life is about what we can do to live fully regardless (or because of) challenges like MS.  Beyond MS  Get Moving is about, guess what, exercise!  I like the ebook especially because there are a lot of links to sites where specific exercises are shown.  The book convinced me that everything we do to move our bodies is good!  If you want to read it in book form, which is actually my favorite way to read, it is coming out in paperback, and the publisher will load it onto Amazon soon. 
WHAT I THINK ABOUT THESE DAYS What I want to do is write about the Trinity of living beyond MS—diet, exercise and especially de-stressing.  I say especially because that is the biggest goal I have for my own life right now.  In large ways I have done it already, I retired when I was given the diagnosis, I moved to a small rural town in northern New Hampshire where laid back is the order of the day.  In small ways, though, I am learning it now, how to create healthy boundaries between me and the good ideas I come up with—not everything has to be done, not everything has to be done by me—that will be a huge lesson when I learn it.
I’ll be checking in on this blog every Thursday.  See you next week--Rosalie
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    Author--
    ​Rosalie Richards

    MS keeps coming in stages.  The first 'maybe' diagnosis was in 2004, the next 'for sure' one came in 2011.

    I thought that was the end of the story, but life with MS keeps unfolding.  

    I'd enjoy reading your posts.

    If you like this blog, check out my books--
    Beyond MS  Your Best Life and 
    Beyond MS--Get Moving!

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