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Family, Watching Their Dance

Something Good That Came Out of My Family’s Tragedy

 

My family is everything to me and when I think back to how I almost didn’t have John, his three sisters, Keith, and Vanessa, in my life, I get goose bumps.  My three sisters-in-law were a huge part of John and my life and after losing  Cindy, the third sister to die from complications of Huntington’s disease (HD), I was looking for something good that could come out of my family’s tragedy.

That’s when I started writing John and my inspirational love story, Watching Their Dance, while living in the shadow of Huntington’s disease.  The book honors Lora, Marcia and Cindy while heightening HD awareness and generating dollars to help in the fight against the cruelest disease on the plant. 

“Behind every exquisite thing that existed, there was something tragic.” ~Oscar Wilde

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  http://www.theresecrutchermarin.com  , Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

100% of the proceeds from Therese’s book is being donated to Huntington’s Disease Society of America.

We Can Never Lose Hope………………..

Family, HDSA

The Faces of Huntington’s Disease

In the following video are the faces of Huntington’s disease (HD); a devil of a disease that attacks adults and children.  Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It’s like having ALS, Parkinson’s and Alzheimers at the same time.  HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.  http://hdsa.org/what-is-hd/ 

My three sisters-in-law, Lora, Marcia and Cindy had HD and are now gone from our sight.  http://www.theresecrutchermarin.com 

There is no cure or therapy at this time.  

Video taken at the Huntington’s Disease Society of America (HDSA) Annual Convention, June 7-9-18, in Los Angeles, CA and I was there!

We can Never Lose HOPE….  

Family

Ten Years Ago

Ten years ago this month, John and I lost the last two members of his immediate family.  His father, I called him Big John, passed away from bladder and colon cancer at age 86.  Cindy, my third sister-in-law would succumb four weeks later, to the monster I grew to despise, Huntington’s disease, at age 54. 

         

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.   http://www.hdsa.org  

It was a difficult time for us, to say the least, and the twenty-four years of anticipatory grief had taken its toll.  John and I had each other, that was so important, and we slowly regained our strength.  It was shortly these losses that I began searching for something good that could come out of my family’s tragedy.  I found it in my story.

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  http://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 HD organizations around the world.

 Subscribe to Therese’s Blog via Email

 Enter your email address to subscribe to Therese’s blog and receive notifications of new posts by email and receive the first chapter of her book, Watching Their Dance, via email.

 

 

 

 

Family, HDSA

2018 HDSA National Convention

I received this brochure in the mail from Huntington’s Disease Society of America (HDSA) the other day to register for this years National Convention in Los Angeles and I thought I’d share it.  (See below to print a copy)  I will be attending as a Board Member of the Northern California Chapter and I will also be selling my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.   http://hdsa.org/about-hdsa/annual-convention/ 

Highlights from 2017 Convention:  http://hdsa.org/about-hdsa/annual-convention/2017-2/

To print a copy of the brochure, click on these 2 links:

  http://theresecrutchermarin.com/wp-content/uploads/2018/02/Scan-2-1-e1518459511757.jpeg  

  http://theresecrutchermarin.com/wp-content/uploads/2018/02/Scan-3-1.jpeg  

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  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

100% of the proceeds from books sold in the U.S. will be donated to HDSA.  John and Therese donated $9,015.00 in December which was the profit from books sold since Therese published April 2017.

 Subscribe to Therese’s Blog via Email

 Enter your email address to subscribe to Therese’s blog and receive notifications of new posts by email and receive the first chapter of her book, Watching Their Dance, via email.

 

 

 

 

 

Family, Love

A Message from Author Therese Crutcher-Marin

Many of you know I’m involved in the Huntington’s disease community and a board member on the HDSA Northern California Chapter.  Until I published my book, Watching Their Dance, I was unable to speak about John and my life at-risk for the cruelest disease because of the grief I carried in my soul.  Writing my story was a healing journey which allowed me to place the grief in a book and show the world what Huntington’s disease families go through for generations.    http://www.hdsa.org    

The following are reasons why I wrote the book and outcomes since I published April 2017.

  1.  The book is a personal HD fundraiser/HD awareness project and 100% of the proceeds from books sold in the U.S. are being donated to Huntington’s Disease Society of America (HDSA) to help in the fight against this horrific disease that killed my mother-in-law and 3 sisters-in-law. By heightening awareness, I hope to increase donations from folks who have never donated to our cause.
  2.  It’s an inspirational love story, over 38 years, and how John and I lived in the shadow of Huntington’s disease.  Since April 2017, I’ve sold 1,500 books/ebooks and my goal is 5,000. My book can be found on my Author Website: www.theresecrutchermarin.com, Amazon, B&N and other book websites.  $7.00 is donated to HDSA each time the book is purchased.
  3.  John and I donated $9,015.00 to HDSA in December 2017 which was the profit from books sold since I published in April 2017. 

We Can Never Lose HOPE………………..  

Woody Guthrie Festival 7-2017

Subscribe to Therese’s Blog via Email

 Enter your email address to subscribe to Therese’s blog and receive notifications of new posts by email and receive the first chapter of her book, Watching Their Dance, via email.

 

Family

Merry Christmas

During the holiday season, I reminisce about Christmas past, usually as I lay in bed before I go to sleep. As I drift off into slumberland, I dream about Christmas’s when I was young and when our children, Keith and Vanessa, were growing up.

My parents, Jim and Rita, always made our Christmas special, and we have many movies of my three sisters and I in curlers approaching the tree on Christmas morning squinting and shading our eyes from the blaring lights.  My mom is holding me on her lap in 1955, my first Christmas, and the other picture is of my older sister, Ellen, and I under the tree in 1956.

The picture below is of all the cousins on Christmas Day at my Aunt Mary and Uncle Bill’s home in 1964.

 

 

John and I wish you a Merry Christmas with family and friends.  Peace on Earth, Goodwill to all Men. 

A Christmas gift idea!!!!    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  http://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 Huntington’s Disease organizations around the world.

 

 

 

 

A Love Story, Family

Excerpt from “Watching Their Dance”

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’sChapter 17……………….

“On March 1, 1986, Big John drove his daughter to University of  California San Francisco Medical Center.  I’d been worrying about the Marin siblings for eight years, though it felt more like fifty, and many times I’d just wanted to flee.  This was one of them.  I dreamed of escaping with John and Keith into a world that had no illness, no genetic disease, where we could live happily ever after.  But that was a fairy tale.  The reality was–and I had no doubt–that Marcia had HD.  My fear was almost consuming me, but, of course, it was nothing compared to what Marcia must have been feeling.  UCSF Huntington’s Clinic

The neurologists at the medical center had a rating system, which they used clinically and in research, to evaluate a patient’s motor, cognitive, behavioral, and functional abilities on a scale from zero to four, four being the most severe dysfunction.  Marcia would be evaluated in fifteen areas, among them gait, tandem walking, rigidity in arms, tongue protrusion, and ocular pursuit.  

John called that evening to find out how it went, but she didn’t say much, only that the doctors would call with the results in three weeks.  He tried to be upbeat, but you could tell it was a hard conversation.  Even Big John was at a loss for words. Once again, I wished with all my heart that I could simply stop time, so that no more cells in Marcia and Lora’s brains would die and they wouldn’t have to experience any more pain or sorrow.  And that way, HD could never find my love.”

We can never lose HOPE………..Therese

100% of the proceeds from Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a memoir/nonfiction book, is being donated to Huntington’s disease organizations around the world.

To purchase the book, go to Therese’s website:  http://www.theresecrutchermarin.com and Amazon    B&N     Kindle     Kobo      Nook 

Family

Genetic Testing for Huntington’s Disease

Our friends and family know John genetically tested but I have never shared why he decided to test for Huntington’s disease. Here’s the story.

In the fall of 2015, Keith was getting married and Vanessa had just become engaged for which John and I were thrilled. (Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain.  Every child of a parent with HD has a 50/50 chance of carrying the faulty gene)

One morning in late October of that year, I was standing in the kitchen making coffee when John came up to me, hugged me, and gave me the shock of my life.  “Your know Therese.  I want to give the kids a definitive answer about how Huntington’s will affect their lives, so I’m going to get tested”.  I remember just staring at him, speechless, because we hadn’t spoke about him getting tested since 1993 when the test became available.

After that discussion, we visited the kids in the SF Bay Area and John shared the news. Soon after that, John called the HDSA Center of Excellence at University of California Davis Medical Center  http://hdsa.org/hdsacoeucd/ and scheduled an appointment. (Story continued on blog on August 18).

Testing for Huntington Disease: Informed Choice:    https://depts.washington.edu/neurolog/images/neurogenetics/hungtinton.pdf

At the Mayo Clinic: http://www.mayoclinic.org/diseases-conditions/huntingtons-disease/diagnosis-treatment/diagnosis/dxc-20321460

We can never lose HOPE…………….Therese Watching the Dance Huntingtons Disease

Therese is donating 100% to Huntington’s disease organization around the world to help in the fight against the horrific Huntington’s disease.  Purchase it on her author website:  http://www.theresecrutchermarin.com   or on Amazon UK, GB, Germany, Netherland, Italy, France and Canada.

Family

Memorial Day in the U.S.

I have fond memories of the holidays when I was growing up in Shawnee Mission, Kansas, in the 1960’s with my aunts, uncles, cousins, Grandmother McKibben and my Grandmother and Grandfather Crutcher.  We lived not too far from each other so every holiday, and some vacations, were spent together.

One of my most vivid memories was the holiday of Memorial Day; for us kids it was the beginning of summer. Mom and Dad would pack my sisters, Ellen, Julie, Jennifer and myself in our big old Chevrolet and head to the Catholic cemetery where Mass would be celebrated.  After decorating the graves of our relatives with American flags and flowers, the family would spend the rest of the day together, usually at Aunt Mary and Uncle Bill’s home, since they had several acres where all the kids could run around.  Mom, Aunt Mary, and Aunt Nancy would call us for dinner and we’d have fried chicken, potato salad, soda pop, green beans, homemade biscuits with jam and, of course, cake with ice cream .

When I was searching for information on Memorial Day, I learned Decoration Day was the precursor of Memorial Day, and was first observed in 1868, following the carnage of the Civil War.

In early May 1868 the Grand Army of the Republic, a nationwide group of veterans of the Union Army, called for a day to remember those who had died in the war.

The Meaning of Memorial Day, From the Civil War On.   http://dailysignal.com/2017/05/26/meaning-memorial-day-civil-war/

Have a wonderful holiday…………..Therese

Therese is the author of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. You can purchase the book on her author website:  http://www.theresecrutchermarin.com

 

 

 

Family, May is HD Awareness Month

Excerpt from “Watching Their Dance”-Ch 10

One Saturday in June, the plan was for “the girls” to go shopping while “the boys” installed a hot tub in Lora and Dave’s backyard. When Marcia and Glenn drove up, Lora and I grabbed our purses and jumped into Marcia’s Datsun 280Z. Sitting in the back, I found a box of tapes and started to look through them. “Are these self-help tapes?” I asked.

“Yes. They’re from est, for Erhard Seminars Training. Werner Erhard’s ideas focus on personal responsibility, accountability, possibility, and transformation. All the big companies are sending their professionals to his five-day training classes, or buying the tapes.” http://www.wernererhard.com/est.html

Lora turned around from the passenger seat and took a couple from me. “How long have you had these, Moochie?”

“Pacific Bell bought them for me last month. It’s nice to listen to them while I’m driving to see a client. You can borrow them if you like.”

I admired Marcia’s determination and tenacity, knowing how she had moved up the career ladder at Pac Bell without a college degree. These tapes were no doubt another strategy to improve her expertise and expand her personal skills, but the timing was interesting.

At Macy’s, Marcia and I shopped for clothes while Lora disappeared into the housewares department. When we met her there an hour later, her face lit up as she showed us a Cuisinart food processor. “Look at this, you guys. Having this could save me so much time and energy.” She looked at the price tag. “Ouch!”

“Maybe it could be a business expense,” I said. “Do you and Anna ever think of starting that catering business you’ve been talking about forever?” Anna was an old friend from Martinez; in the late thirties, her mother had gone to Alhambra High with Big John.

“Oh, we’re still in the planning stage.”

I looked at Marcia. “I think your sister must be in heaven, thinking about cooking all day instead of working for the accountants.”

At lunch, Marcia said, “You know, Lora, having your own catering business has been your dream since you were in high school. You and Anna would make a great team. You should do it.”

I nodded vigorously. I didn’t know if Marcia was thinking what I was, but I couldn’t help adding, “Yes, Lora, you should go after your dream!”

None of us could resist ordering a piece of chocolate pie with our coffee. As I dug into mine, I noticed a twitch in Marcia’s shoulder; it was very slight, but it happened several times. Had Lora noticed it, too? I considered asking her if the opportunity arose, but I was pretty sure I knew how she would react. None of the Marins ever wanted to talk about Huntington’s disease.

We can never lose HOPE……………….Therese

To purchase Watching Their Dance; Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s go to http://theresecrutchermarin.com/purchase-book/