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About Author, Huntington's Disease

Unlocking the Marin Family Secret

When Lora, Marcia and Cindy, John’s sisters found out the family secret, their mother, Phyllis, had Huntington’s disease (HD), I remember being afraid but I didn’t know what I was afraid yet.

“Yet” is the key word. I’d never heard of HD or seen anyone with the disease, but by the look on the three women’s faces that day, I knew it couldn’t be good. The Marin Family Secret was about to be unlocked.

Phyllis Marin

This is the scene from my book, Watching Their Dance when the three Marin sisters told John and me what they had discovered.

(Chapter 1 page 14)

Cindy speaking: 

“The three of us visited Aunt Evelyn last week,” she began. 

“It’s been years since we’d seen her, and we decided it was time to reconnect.”  She looked at me.  “She’s our mother’s younger sister; she lives about an hour south of Sacramento, in Galt. 

We learned from her that we have a genetic disease in our family, called Huntington’s disease. 

Our mother, Phyllis, and three of her sibling had it.”  She paused a moment to let the words sink in. 

“We rarely saw our mother’s siblings after she died, so we were unaware that they had suffered from it.  It’s an inherited disease that causes the progressive breakdown of nerve cells in the brain.  It affects muscle coordination and leads to behavioral symptoms and, um, mental and physical decline.”

Needless to say, this conversation that took place on a cold November day, changed my life as well as the four Marin siblings lives.  For the next six months, I began a period introspection, self analysis of whether I could live with this HUGE UNCERTAINTY in my life and whether John and my love was strong enough to bear it.  

Sign up for my blog via email and I’ll send you the 1st Chapter of my book.  https://theresecrutchermarin.com/

We Can Never Lose HOPE…….

Author Therese Crutcher-Marin Book Signing in Auburn CA

Therese at the 2018 HDSA Annual Convention in LA.

Therese selling books at the Woody Guthrie Folk Festival in Okemah OK in July 2017

 

 

 

 

 

 

 

 

100% of the profit from Watching Their Dance is being donated to the nonprofit, Huntington’s Disease Society of America.  To date, I’ve gifted approximately $15,000.00.

 

 

 

 

 

About Author

“Watching Their Dance” Took 2nd Place on TaleFlick.com

Thank you to everyone who voted last week for Watching Their Dance, a memoir and a love story, to have a shot at being made into a MOVIE. It was the 1st round of competition.

I subscribe to a website, TaleFlick http://TaleFlick.com  created by Hollywood producers, where my book is looked at by those who Make MOVIES.

The book came in 2nd place which is not too disappointing to me. It was out of 40 books. I was happy to be selected for the contest & it gave awareness to Huntington’s disease.

The book can be purchased here on my website, a hard book or an epub file. Shipping is free  https://theresecrutchermarin.com/purchase-book/

It’s also available on Amazon around the world.  amazon.com/Watching-Their-Dance-Marrying-Huntingtons   Amazon.com/author/theresecrutchermarin

It can be found on many other book websites, like B&N, and available in Kindle, Nook, Kobo, ibooks. .barnesandnoble.com/w/watching-their-dance-therese-marie-crutcher-marin/1126082854

Author Therese Crutcher-Marin

100% of the profits from Watching Their Dance is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA).  To date, I’ve donated $15,000.00 to HDSA, the profits since I published.

Please read the wonderful Reviews I received on the book.  Every author hopes to receive the positive reviews by trusted organizations; KIRKUS Reviews, Goodreads, Book Life:  https://theresecrutchermarin.com/goodreads-review/

We Can Never Lose HOPE…

 

 

About Author

The Summer of 1968

Grandmother, Chris Crutcher

As the summer heat and long days fade into the colors of Fall, which is my favorite time of year, I find myself reminiscing of summers gone by; particularly the summer of 1968.  

This was my last summer in Shawnee Mission Kansas, where I grew up with grandparents, aunts, uncles, cousins close by, and it was as the beginning of a change I never imagined.  When the summer of 1968 ended, I was coming of age and it was the last time I thought and acted like a kid.  What-does-coming-of-age-mean

Crutcher Family 1966

In May 1969, my family moved to Riverside California and a new social culture was cast upon us. Gone were the carefree days of walking to the swimming pool with my sisters and neighborhood kids, catching fireflies at dusk, making up games, playing outside until my father stood on the back porch and whistled for us to return home and itching the chigger bites until they turned red.  

This is not an unusual story, we all become teenagers, priorities change and drama enters lives.  At age 13, in sunny California, I still went to the swimming pool with my girlfriends, but it was to get a tan, not get my hair wet and gossip.

I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to this horrific disease.  A group of HD advocates have formed a team to become a HDSA San Francisco Bay Area “Affiliate” to serve the HD community of 7.1 million.  The San Francisco Bay Area deserves to have a HDSA Chapter which we will hopefully become over the next couple of years.  What is Huntington’s disease

The nonfiction book, Watching Their Dance is available on many book websites and $7.00 is donated to HDSA every time the book is purchased.  https://www.amazon.com/-/e/B06ZY85776

We Can Never Lose Hope…….

 

About Author, Mindful

Tomorrow Is Not Promised To Anyone

The other day, a gal said to me, “Your family does so much; you travel a lot, your kids do marathons, triathlons, you give time to the the Huntington’s disease cause, the homeless, you write books.”  She looked at me quizzically, “Why do you do so much?”

I looked at her curiously, thinking it was a funny question because this is how we have always lived our lives.  We taught our children to work hard and play hard and I remember saying to them over the years, “Life is short, enjoy it, experience it; tomorrow is not promised to anyone; we never know what the future will bring, take a chance, have no regrets, learn from your mistakes”.

When Huntington’s disease (HD) entered our lives, it taught me many things and one was to appreciate the life I had with John and the kids every single day.  We didn’t know, until 2016, whether John inherited the mutated huntingtin gene, so we embraced life with the kids and had as much fun as possible together.

We Can Never Lose HOPE………

Read the first Chapter of Watching Their Dance by clicking on link: WatchingTheirDanceFirstchapter1

Author Therese Crutcher-Marin Book Signing in Auburn CA

Take a look at my Amazon Author Page http://amazon.com/author/theresecrutchermarin

My author website where you can also purchase my book is https://www.theresecrutchermarin.com

About Author

More About Crossroads

Crossroads symbolize an important decision that is unavoidable. The choice to continue the same way, which would be a straight path, no longer exists. Now the road divides into at least two paths. The traveler must choose one or remain stuck in place. psychologytoday.com-ways-get-yourself-unstuck

In my last blog, I wrote about the great pause, the crossroad, that I was confronted with; be with the love of my life, John Marin, or walk away forever.  Living with an unknown gene status for Huntington’s disease (HD) petrified me and I questioned whether I had the strength and a love strong enough to live a life of uncertainty.  what-is-huntingtons-disease

I go stuck stuck, I felt tied up, for seven (7) months, difficult months with a broken heart.  I felt guilty turning away from John, because he MIGHT have Huntington’s disease.  But I was scared.

 

In the end, I took a leap of faith to be with John and even though his three (3) sisters died from Huntington’s disease, I have never regretted my decision.

We Can Never Lose HOPE….

Therese’s author website: https://www.theresecrutchermarin.com

HDSA 2019 Convention

About Author

A Crossroad at Age 22

The nonfiction book I published, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, begins with the following words:

Some lives seem to move smoothly along a natural continuum, with one event or decision seeming to slide into the next.  Such people seem to have faced no dramatic forks in the road, had few life-altering choices to make.  Other lives, at least in hindsight, travel in a particular direction at one particular life-changing moment.  That’s what happened to me, when, at age twenty-two, I suddenly had to confront the most complicated decision of my life.”

Never before had I been confronted with such a huge crossroad that caused a dramatic pause. That pause, lasting for seven heartbreaking, confusing months, was whether to continue my relationship with the love of my life, John Marin, who had a 50/50 chance of inheriting Huntington’s disease (HD).  HD is a rare, fatal, genetic brain disorder with NO CURE and it affects children and adults.  To read more about HD, click here

Having grown up in the Midwest, with 1950’s over protective parents who’s only expectation of their four (4) daughters was to marry and have kids, I lacked life experiences with death and genetic diseases.

Watching the Dance Huntingtons DiseaseBy purchasing my book, you will be helping in the fight against HD because 100% of the profits from the book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA).  It can be found on many book websites like amazon.com/Watching-Their-Dance-Marrying-Huntingtons/dp/0998442208:

or on my Author Website:  https://theresecrutchermarin.com/purchase-book/

Therese at the 2018 HDSA Annual Convention in LA.

We Can Never Lose HOPE…………..

About Author

Advocating for Huntington’s Heals My Heart

Finding one’s passion in life and being able to act upon it is a great feeling.  Supporting a cause close to one’s heart is very rewarding and support can take many forms; financially donating, volunteering one’s time, and/or participating in fundraising events, etc.

John and I have been connected to the nonprofit, Huntington’s Disease Society of America (HDSA) since 1978 when John and his three sisters discovered Huntington’s Disease (HD) in their family.  Over the years, we made financial contributions, but after HD stole my three sisters-in-law I wanted to be involved with HDSA.  Involvement with HDSA, the HD community and organizing fundraising and outreach efforts, truly HEALS MY HEART.

Get involved today with what’s important to you and what will make you happy.

https://tinybuddha.com/blog/try-this-if-youre-struggling-to-find-your-passion/

 

 

 

We Can Never Lose Hope……………………

Therese at the 2018 HDSA Annual Convention in LA.

 

About Author

Subscribe to Therese Crutcher-Marin’s Huntington’s disease Blog

      

Subscribe to My Blog via Email

And I’ll email you the first chapter of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s a nonfiction/memoir.  Author Website:    https://www.theresecrutchermarin.com   

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  https://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format. 

100% of the proceeds from Therese’s book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA).  As of December 31, 2018, John and Therese have donated $14,115.00 to HDSA.  The book was published in April 2017.

 We Can Never Lose HOPE………..  Therese

About Author, Love

Live, Laugh, Love

Each of us is given but one pass through life.  No retakes.  No repeats. 

So, make a covenant –

To live well.   Be good to yourself, your family and others.   Be big in behavior, not small.  Think mature, not immature.   Take the long view, not shortsighted.   Participate thickly, not thinly.   Consider carefully Abraham Lincoln’s thought that “in the end, it’s not the years in your life that count. It’s the life in your years.”  

Oscar Wilde

Or roll Oscar Wilde’s thought around during the day:  “To live is the rarest thing in the world. Most people exist, that is all.”  Celebrate how great life is.  The world is a beautiful place to be.  Colorful.  Stimulating.  Interesting.

To laugh often.     Laughter cures the soul.  It removes masks.  Humanizes.    Laughter heals many rifts, bridges many gaps.  It builds memories.   Laughter is universal among people.  Laughter makes you live longer.  Laughter makes friends, builds memories. Laughter vanquishes demons and warms your soul.

To love greatly and deeply. Love is the most generous gift given us.  Love makes all else possible.   To love greatly means to love unselfishly, for the sake of others as well as yourself.   To love things beyond yourself, beyond your personal interests. Love gives back two fold. Love improves others.  Love improves the giver.

From Prof. Marty’s Corner https://www.livelaughlove.com/live-laugh-love-blog/philosophy

Author Therese Crutcher-Marin
John and Therese

Love is what got John & I through the tough times…………watching Lora, Marcia & Cindy, my three sisters-in-law, struggle with Huntington’s disease.

Therese’s author website: https://www.theresecrutchermarin.com
About Author, Hope

How Huntington’s Disease Enriched My Life

This statement may seem ridiculous given the statement I’ve created for Huntington’s disease (HD); “the cruelest disease on the planet”. I have not changed my mind regarding the statement but HD transformed my way of thinking, in a positive manner, really, without me even knowing it. WhatisHD

After I’d made the decision to marry John, who had an unknown gene status for HD, I realized, in order to not lose my mind with worry, I had to retrain my brain; first, to learn how to live in the moment. how-train-your-brain-think-differently

I learned to embrace what I had right in front of me; John, our love for each other, the life we were building together, and the hopes and dreams we hoped to achieve.

I learned not think too far ahead and what that might mean because nobody has a crystal ball; for my sanity, this moment, this day is what I focused on.

I didn’t learn these things overnight; it took time to transform my way of thinking since I’m a planner, a very detailed planner.  

Like a caterpillar’s transformation into a butterfly, it takes time to relearn how to think. 

We Can Never Lose HOPE……………