"When the Road Turns"
Inspirational Stories about People with MS
by Margot Russell
hosted by Joe Spataro
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Margot Russell has worked as a news broadcaster, a reporter and a television producer, and was diagnosed with MS in 1998. She is a speaker and Executive Director of the Sea of Dreams Foundation, which creates programs to better the lives of the disabled.

In this interview with Margot, we look at how her book is different, telling the stories of real people; different types of MS; hormonal therapy for MS; the differences between men and women with MS; how to get in touch with your dreams, your talents and your ambitions; and more about Margot and her family.

Stories of real people

Joe:
I’d like to welcome Margot Russell to our interview about her book, "When the Road Turns." You have faced your own challenges with MS and the title of the book symbolizes how you feel about your personal journey and the journey of others. Could you tell us a bit about why this book is different from other books about MS and why people should buy it.

Margot:
This book addresses the heart of the person living with MS. It is not medicinal, and does not address the practical issues of living with MS, as so many books written on the subject seem to do.  This book is written by seventeen people living with MS--in their own words.  They bring us on their journey---from diagnosis to acceptance-- and explain how they learned to reinvent themselves in the face of adversity.  These writers are not doctors, authors or therapists.  They are the faces of multiple sclerosis.  Their stories mirror our own.

Different types of MS

Joe:
Have you addressed all the aspects of MS in your book... relapsing/remitting, chronic progressive, etc?

Margot:
That was my first consideration. It's difficult to write about MS because it varies so much from person to person.  My hope was to include all types of people with MS-- and not just those who have reached the South Pole or climbed Mt. Everest.  I wanted to scoop up a handful of people with this disease and highlight their journeys.  My definition of hero differs from the one our culture insists upon.  A hero to me is not someone with extraordinary physical capabilities.   To me, a hero is someone who wakes up every morning and lives the best life they can despite the obstacles they encounter.  That might be a woman in a wheelchair in Wisconsin who knits mittens for the homeless, or the man who is content to pluck weeds from his garden all day.

Being a hero shouldn't imply you have to "do" something.  Being a hero, I think, comes from knowing who you are, and deciding what to be in relation to that.  For me, I am choosing to be a spiritual, contented and peaceful woman who happens to have a disease.  What I "do" in life, I hope, will spring from that place.  I think we should wrestle with who we want to "be" first, and hope the "doing" will follow......

Hormonal therapy for MS

Joe:
Many of our members on the HotFlash group have taken HRT (hormone replacement therapy) for symptoms of perimenopause and menopause. Some of them also have MS and have noticed an improvement in their symptoms on HRT with respect to their MS symptoms. Other research has shown a positive correlation between MS symptoms and MRI scan changes on HRT. Have you come across evidence of this in the case histories and research you did to make this book?

Margot:
The thing about multiple sclerosis is that different therapeutic regimens seem to work for different people.  I've met people who believe they are managing their MS symptoms by altering their diets, and yet, this alternative approach doesn't seem to work for everyone. Others seem to do well on one of the Interferon drugs prescribed for multiple sclerosis, but that isn't true for everyone either. 

My own personal belief is that multiple sclerosis has become a blanket term, and there are possibly several different causes or etiologies.  Researchers have discovered quite recently that there are three different types of lesions that develop in patients, perhaps pointing to three different causes.  Just recently, a friend of mine was diagnosed with an "offshoot" type of MS, characterized by lesions found only in the spinal cord and not in the brain.

Yes, I do believe that hormone treatment for MS might be beneficial.  Studies have shown that women with MS often go into remission during pregnancy. There is a study being conducted right now that is addressing this. The problem is that researchers expect improvement to result in a majority of test subjects.  If my theory is correct--that MS has several different causes--then not everyone will improve in any given experiment.  It depends on why that person has MS!

Differences between men and women with MS

Joe:
You tell us a bit about Montel Williams and his personal struggle with MS. Could you tell us a bit more about him and perhaps and differences between men and women having MS.

Margot:
Whenever someone in the public eye is diagnosed with a disease, they have to live with it in a very open way.  This is a difficult thing to do, though in the long run, the exposure created by their diagnosis benefits the disease--both economically and in the potential he or she has to educate the general public.  I think Montel is still coming to terms with his diagnosis, but already he has generated quite a bit of awareness--not to mention research dollars.  I applaud his bravery and perseverance.

Montel wrote the prologue for my book, "When The Road Turns," and I am  extremely grateful.  He also endorsed the book and has lent me his support in  this way.  I think no matter who we are--talk show hosts, single fathers with MS, the newly diagnosed-- we are all in this together, and we're learning to both accept and fight this disease one step at a time.  It's important to share our stories and lend our support to one another.

Men and women experience this disease in much the same way, although we have  different issues.  Men seem to contract a more progressive form of the disease, but on the other hand, more women are diagnosed than men.  Men often  have to deal with the reality of being the "bread winners" in a family, and so many of their concerns are financial.  I know many men who had to change jobs or stop working all together after their diagnosis, and so issues of self esteem came into play for them as well.  In fact, almost all of the male contributors to my book dealt with those very concerns in their chapters.

Women have many of the same concerns as men, but I think family issues are more apt to come into play for them.  Although our culture is changing (some of the women in my book are single mothers--and thus the breadwinners) a majority of women still take the lead role in their homes.  The reality is, though, that MS can be very disruptive to the lives of those who are diagnosed, and it doesn't stop there.  It effects the whole family system.

Dave Perez, a single father with MS, contributed a chapter to the book.  He has successfully raised three children by himself; MS doesn't care at all about tradition!

How to get in touch with your dreams

Joe:
You described that "When the Road Turns" that sometimes it can work as a special gift in addition to the challenges it offers. Could you tell us a bit more about this.

Margot:
The only constant thing in life is change.  There are few people who get through life without facing some type of change or adversity. The key to overcoming challenges is the way in which you learn to interpret those challenges.   When someone is diagnosed with a chronic illness, it is up to them to decide how they are going to "be" in relation to that.

For example, Dr. Richard Radtke is a contributor to my book.  He is an oceanographer who is paralyzed from the neck down from MS. His wife left him, his career seemed to be over, and he truly felt he had nothing to live for.  But one long night, he chose life over suicide.  He decided to get up the next morning and live life like he always had---as an oceanographer.   And, he decided, he wasn't going to let anything stand in his way.  He now travels the world as a disabled oceanographer, and was the first disabled man to conduct research in the South Pole.  In effect, he isn't letting illness define him.  He is defined instead by what he does with that adversity.  Does he face obstacles each and every day?  Certainly he does.  But he continually finds a way around them.   Does he have something we don't have?  Certainly not.  He has perseverance and determination and that lives in all of us.

I like the title of the book, "When The Road Turns."  The road turns for everyone in life.  Your only question should be, "Now where do I go?'  You have to get in touch with your dreams, your talents and your ambitions and set out on a new path.  It isn't easy, but it is possible.  It's necessary.

More about Margot and her family

Joe:
Could you tell us a bit more about your family and how they have responded not only to your personal journey, but also to the work you have done to raise awareness for people and families facing MS

Margot:
When I was diagnosed, I was a single mother.  I was making my way to work everyday as a radio news broadcaster, racing home to pick up my girls and make dinner.   It was a difficult time as I didn't have the gift of insight just yet.   Eventually, I had to leave my job and went on disability for a year.  That was a tough time for me; I had really defined myself by my work and my ability to provide for my children on my own.

That year proved to be a time of real growth.  I went to Peru by myself--- a life long dream--and hiked the Inca Trail to Machu Picchu.  I started writing again and getting in touch with my own inner life.  I had no money, no job, but I did have a lot of love in my life.  I started appreciating what was important.  I began redefining myself.  I recreated myself anew from the ashes of my old life.

I think my family is proud of me.  The person they see now is more at peace, more confident, more directed.  I think illness and adversity have a way of steering us toward what's important--what matters.  This is the uncommon gift of illness.

From my own adversity, has sprung this book.  I have a better connection to my children because I work from home.  I eventually got remarried to a man who loves me as I am.  My life has improved dramatically, and not because of MS, but rather how I have responded to it.

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