Rosalie Richards
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How MS Looks...Depends On Where You Are

4/28/2016

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The distance MS put between me and others was the first awkward thing I noticed.  MS made me feel uncomfortably distant from the life I had shared with friends and family, with the world.

When I first heard the term “MS” applied to me, I felt like I was going to get stuck in my spot, while others would get to live their full lives.  

That’s why the conversation with my friend Liz (her story is in my first book) was important to me.  I used to think about what she told me.  It fed me hope based on reality, not some airy fairy pipedream. 

I talked with Liz soon after my diagnosis.  She told me that she often uses a cane when she goes out.  I didn’t know how I would handle that.  I wondered how she got used to stares when she went to restaurants. 

Liz said she shifted her thinking. 

Instead of worrying about how she looked to others, she focused on what she is able to do.  She walked 8 miles on a vacation with her grandkids—with that cane. 

One thing my MS friends and I revel in is getting to do the things we love, whether it is golf or traveling or going out to eat—claiming our lives. 

That’s how I felt on my trip last week, like my worlds were connecting.  I overdid it but got to Baltimore after almost 11 hours in the car, to see my family.

My daughter told me about the MS walk that weekend that would let you participate as a virtual walker.  My family took me to the zoo while I virtually walked with the MS happening—it was exciting, I was in the sunshine looking at wild animals and I was virtually on the Baltimore MS Walk—it felt like I was bi-locating!

The zoo requires going up and down steps and following the sidewalks on long walks. Raquel and Bryan were more nervous about it than I was. 

That is an MS learning for me now.  MS looks different to me than to those who love me, It seems that others sometimes see my MS as larger than I do.

How does MS look like from where I stand? 
It looks like I will go to a little more trouble to get from here to there than I used to, and I will enjoy complaining about it.

How does MS look like to people who love me, who look at me from the outside?
Like a wild card that may pull the ground out from under me.
 
Why is that?  Maybe because MS makes my gait look different.  I am not using a cane, but sometimes it might make friends and family feel more secure on my behalf if I did.

There is a lapse between who I am inside and how people see me from outside.

The lapse between me from my perspective and me through the eyes of friends, family, fellow MS journeyers is small sometimes and sometimes wildly divergent. 

Fellow MS walkers see what I do and not my limp, and people without MS often see me needing the metaphorical cane.  But the distance keeps being made up by the love that is expressed.

My family says, “It’s a long walk, can you make it, Mom?”  “Want to lean on my arm, my Mama Rose?”  They’re really saying -- “We Love You.”

My friend with MS says, “I can’t believe your energy.”  She is really saying, “It isn’t the cane, the drop foot or the weak ankle, it’s about claiming what you can do!”

I wouldn’t trade for either of them.

 
 

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The MS Learning in Two Parts

4/21/2016

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An editor for the New York Times wrote about his evolving relationship with illnesses, beginning with a tumor when he was a young adolescent.  It had two parts.

Part 1:  “When I was young and ill, all I cared about was the result, about scalpels and scars.”

Part 2:  “But in this waltz with prostate cancer, I’ve cared about the process, too. All along, I’ve wanted to know what this cancer could teach me, and I like to think that I’ve gripped it just as hard as it has gripped me.
“In embracing the cancer and its teachings, I’ve also embraced mysteries that I couldn’t have imagined more than a year ago. And that’s an absolute adventure, too” (http://www.nytimes.com/2009/05/19/
health/19case
.html?ref=health).

For some of us there are wisdom learnings that come only wrapped in strange unexpected diseases. 
Life is so mysterious, answers and questions come seemingly from nowhere, and so when an impressive
doctor told me that Eastern wisdom tells us to learn from our illness I wondered what the lessons would be.  I also wondered if they would be worth the price.  The jury was still out.

Now I am looking at my own growth, my own path. 

Like the NYTimes editor I see my learnings as happening in two parts.

Part 1:  My initial learnings were like a warrior’s territory—I fought for “my” ground and I also felt like my shield must never be dropped.

That’s the stuff in my first book—how to have your best life with MS.  My theory was that in order to have a good—a better—the best—life, that a battle with MS was going to ensue—an inner battle—a claiming of the territory of my life.  
Part 2:  This year the lessons are different. 

This year I am learning to meet a part of me that was strong when I was very small, but that got pushed aside so that I could do the things that made my life growth happen.  I have found that quiet person who isn’t so interested in shining in a group. 

My life has gotten quieter since I retired, and I crave the morning routine that ends with a conversation with a journal and the river outside my window. 

I live in the Northeast, and the weather is loud here—it changes often, moves around, colors and shapes are different according to the seasons.  I love this life. 

This conversation is my most recent learning. It has slowed me down so that I can see some things.  One thing I see is that MS is an experience that has a personality.  I see MS, not as threatening my identity, but as a part of what I carry around in life. 

The MS experience is a part of me like my fingers are mine—I know the shape of my nails, and I know the shape of my MS. 

My own challenge of MS is individual, has a personality and demands and a relationship with me, a conversation with me. 

Some of my friends express this too.

One friend wrote that he felt good one morning, but that his legs were in a bad mood that day.  Another wrote that she doesn’t talk about having MS, she just considers that she carries it around with her while she lives her life.

It isn’t just MS that gives these lessons.  A friend of mine said she has always considered the illness to be her companion (not her enemy, which I have called MS at times).

Having a relationship with what is going on with MS is another way of knowing that we are not swallowed up by the experience of medications and MS identity. 

Instead of getting lost in the mix of diagnoses, symptoms and medications, it seems that our lives keep getting more texture.  The evolving life-learnings keep defining new aspects of life, of ourselves, that were not apparent before. 
 

 
  
 
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Lists...remember more than just milk

4/14/2016

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.I asked a friend of mine who is very creative, and who keeps a lot of energy going in her life, what she does to experience positivity in the middle of her demands and obligations (she is in school, home-schooling 3 children, and, of course, carrying MS around with her). 
 
She said, “I make lists!  I NOTE WHAT IS POSITIVE IN ME AND MY LIFE.”
 
Why did she respond in capital letters?  Because this is key to her approach to life.
 
She went on, “Here is what I tell my friends with MS—“
Step 1 Buy a yearly planner
Step 2. Write an accomplishment every day, even if it is just doing the
            dishes.
Step 3. Look at all the great things you have done
Bonus Step 2.5 add something you have done for someone else and
             something you have done to make yourself a better person
 

To-do lists are great...
There are benefits to logging our plans and actions that the efficiency experts know:  lists help us see the steps needed to get to a goal, and they keep us on track so that we actually DO things that, early in the morning, seemed like a good idea (like getting on the mat instead of forgetting our yoga workout for the day).  They organize us.  As a dyed in the wool list-maker, I love those things.  I write lists every day so I will get the right groceries, won’t forget to change the oil while I am out, things like that. 

 
...but there can be more
My friend creates lists of a special sort, to remind herself to focus on the amazing things in her life.  She notes the things she accomplishes, small and large. 

 
Today I want to look only at the power of positive lists, first in terms of the power of positive thinking, and second in terms of the power of repetition. 
 
Why thinking positively? 
An early researcher on positivity, Sheier, said "We know why optimists do better than pessimists.  Optimists are not simply being Pollyannas; they're problem solvers who try to improve the situation" (http://www.theatlantic.com/ health/archive/2012/04/how-the-power-of-positive-thinking-won-scientific-credibility/256223/).
Psychology Today published an article on the positive effects of making lists such as the one my friend makes:  they help us prioritize our lives according to our goals (hers, in this case, is to remember the ability she has to bring good things into her life and into the lives around her).  They also increase our creativity, because we often allow ourselves to think outside the box when we write lists—we are free to put on paper something that we might not otherwise think or say out-loud (https://www.psychology
today.com/blog/the-creativity-cure/201403/how-making-lists-can-quell-anxiety-and-breed-creativity).
 
Keeping ourselves positive is like a taking gateway drug (only in a good way)—it leads to particular outcomes.  One of those is the ability to think with agility, which is required for improving situations  Negative emotions, on the other hand, “prevent your brain from seeing the other options and choices that surround you” says researcher Barbara Frederickson (http://jamesclear.com/positive-thinking). 
 
Why Repeated Positive Lists? 
What is the science behind the list-plan of my friend?  Research now shows that focused, repetitive mental activity can affect changes in our brain's structure, wiring, and capabilities. (https://www.psychologytoday.com/blog/prime-your-gray-cells/201108/happy-brain-happy-life).  Our capacity for thinking, for problem solving, for enjoying our life, can be learned just by repeating the action my friend does in her positivity list. 
 
We have heard that we choose our destiny.  How can that be, when we didn’t choose MS, we didn’t choose the color of our hair, or many other things?  The practice of regularly creating positive lists is a simple but deceptively powerful way we influence the way our life unfolds.  Why?  Because this opens up capacities for enjoyment, for creative thinking, and for discovering choices in life that were there, but that we didn’t see before. 
 
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​Music and MS:  Will It Heal My Pinky?

4/7/2016

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Music has a reputation for healing, but how far does that healing extend?

Last week I complained about a run-in between my fingers and a mandolin.  I was intrigued when my neurologist ended an email with “Remember, music heals.”

What has she been reading?  She consistently tells me about of new studies on MS, usually having to do with vitamins or drugs; sometimes exercise and diet—but never music. 

Before asking her to explain, I looked into it.  I found three areas where music is used for therapy:  emotional, cognitive and muscular.

Emotional  Music is used to relieve stress (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3734071/).  This is intuitive:  music has a capacity to weave up emotions, to draw us into an emotional stream.

One friend of mine says she listens to favorite music when she changes her mood by doing something enjoyable.  Another friend has a favorite artist she listens to when she needs to give the blues time to work their way through her system. 

Cognitive  A friend of mine uses music as more than a solution to the MS blues:
“I play Renaissance music with a group of friends on a weekly basis.  I recommend that if you used to play a musical instrument and gave it up, pick it up again.  It is so helpful to mood. Even just playing by yourself and learning or improving your skills. I always feel more relaxed and mood elevated after am done playing my flute or recorder.  Playing a musical instrument has been shown to improve communication between neurons.  So you’re having fun and improving brain function at the same time!”

Why is this?  One study says it has to do with blood flow https://hms.harvard. edu/sites/default/files/assets/Sites/Longwood_Seminars/Longwood%20Seminar%20Music%20Reading%20Pack.pdf. 

A recent PBS interview spoke of the healing power of music—and, no surprise, it mentions brain repair (http://www.pbs.org/newshour/bb/health-jan-june12-musictherapy_02-27). 
NewsHour correspondent Spencer Michels reported that when Rep. Gabrielle Giffords returned to Washington for the State of the Union address, it was clear she had made a dramatic recovery after being shot in the head a year before.  “Her family credits music therapy.”  He explained this:  “While research on the neurological effects of music therapy is in its infancy, what is known is that a number of regions in the brain are activated by listening to music.  Scientists say the brain responds to music by creating new pathways around damaged areas.”

Muscular  This is key for many of us with MS—beyond recovering cognitive functioning (which is wonderful in itself), music is used to help people recover muscle ability:  There is a use in muscular dystrophy and for other situations calling for muscle repair, such as in work with veterans who are learning to walk without a limb (http://www.pbs.org/newshour/bb/health-jan-june12-musictherapy_02-27/).

A Harvard study agrees; stating that music helps not only with brain pathways for cognitive results, but also for muscle control for people with Parkinsons;  https://hms.harvard.edu/sites/default/files/ assets/Sites/Longwood_Seminars/Longwood%20Seminar%20Music%20Reading%20Pack.pdf.  Another study speaks of this as well:  “music can produce substantial effects on movement-related symptoms as well as psychological ones in PD treatment (http://www.ncbi.nlm.nih.gov/pmc/articles/ PMC4553388/). 

Music is used for muscular control in MS as well “Music therapy is also especially effective for movement rehabilitation” reports  the Institute for Music and Neurologic Function (IMNF)  (http://musictherapy.imnf.org/services/category/outpatient-multiple-sclerosis).

We More Than Deserve Music
Many of us often won’t allow money and time to be spent on unimportant pursuits.  This is our chance to give ourselves music.  Making music, making it available in our lives—is not frivolous. 

Though many studies on music and healing are so recent as to be mainly anecdotal or pilot studies, not all of them are.  The cognitive effect of adding this richness to our lives has been proven. 
We more than deserve music in our lives, our bodies are better for it.
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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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