Browsing Tag

#huntingtonsdisease #WatchingTheirDance #HDSA

Love, The Marin Siblings

Haunted by Three Lovely Ladies

Lora, Cindy and Marcia Marin

Since losing my three sisters-in-law, Lora, Marcia and Cindy Marin, to Huntington’s disease complications, at young ages, I am haunted by their memory.  John and I were by each of his three sisters’ side while they struggled with Huntington’s disease for 24 years. These experiences are embedded in my mind, heart and soul.

Lora, Cindy, Marcia Marin

Most people associate the word “haunt” as a bad, troubling experience, but to me “haunt” is: to recur persistently to the consciousness of; remain with; not easily forgotten.  I’m no psychologist but I believe I consciously chose to have Lora, Marcia and Cindy remain in my heart and, yes, creep into my consciousness everyday.  I believe this is my way of keeping their memory alive, honoring them because they tremendously influenced my life.

Maybe one day, after I’ve done my best to help the nonprofit, Huntington’s Disease Society of America (HDSA), these ladies will not live in the fore front of my mind and I will find peace knowing I’ve done everything I could to remember them. 

Author Therese Crutcher-Marin

We Can Never Lose HOPE……

To receive the first chapter of the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, visit my author website Author Website  and sign up for my blog and I’ll email the chapter to you.  (signup is on right side of page)

 

 

Storytelling

Why I Chose “Watching Their Dance” As The Title Of My Nonfiction Book

Author Therese Crutcher-Marin, HD Advocate

From the moment I began writing my nonfiction book, I knew what the title would be; Watching Their Dance.  It made sense to me because that is what I had done for 24 years, watched my three dear sisters-in-law, Lora, Marcia and Cindy struggle with Huntington’s disease, each with their own unique dance.  

When I first heard about the disease, it was referred to as  Huntington’s Chorea.  The word Chorea is described as an abnormal involuntary movement derived from the Greek word “dance”. It is characterized by brief, abrupt, irregular, unpredictable, non-stereotyped movements. 

The picture is from Chris Furbee’s movie, Huntington’s Dance, that he produced.  https://www.facebook.com/huntingtons.dance/

The nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family at Risk for Huntington’s is my inaugural book.  It’s an inspirational love story while living with the uncertainty of my husband, John, inheriting the fatal brain disorder, Huntington’s disease, which has no cure.

Subscribe to my blog on my author page and I’ll email you the first chapter of the book.  Author website:  https://theresecrutchermarin.com

We Can Never Lose HOPE………….

             

 

 

 

 

 

 

The Marin Siblings

The Marin Siblings -Eternal Optimists

The eternal optimist is a person who stays positive no matter what happens to him/her. It could be said that this approach is the opposite of complaining and seeing events as negative.

Lora, Marcia, Cindy and John Marin always amazed me because of their eternal optimist attitude.  Even though they had a horrible childhood with no mother at home and an angry, absent, abusive father, they are the most positive people I have ever known.

When I was having melt downs as I watched each sister-in-law slowly be stolen from us by Huntington’s disease, they never complained or said anything negative about their situation. They just smiled and said things like, “I’m lucky I have HD instead of cancer because with cancer you have pain”, or “I don’t blame dad because he did the best he could do”.

Their positive attitude always amazed me and I felt ashamed, not being strong like them, and that I was upset about the situation and they were not.  As time passed, I came to understand that their positive attitude was a gift and I was supposed to learn from them.

One of the lessons I learned was to never see the glass half empty,  always see the glass half full.

John continues being an eternal optimist and always will be.  That is what I loved about the Marin siblings and I was blessed to have known them and have them in my life.

We Can Never Lose HOPE……

To read the first chapter of my nonfiction book, Watching Their Dance, sign up to receive my weekly blog on https://theresecrutchermarin.com and I’ll email the chapter to you.  The book is available on many book websites like Amazon: https://www.amazon.com/Watching-Their-Dance-

Author Therese Crutcher-Marin

Marketing

Sports Basement Sponsors Virtual Run/Walk for Huntington’s Disease

Sports Basement, a sports store in the San Francisco Bay Area, is a sponsor for the upcoming Huntington’s Disease Society of America (HDSA) San Jose VIRTUAL Team Hope 10K Run & 5K Walk on June 20, 2020. 

The HDSA Run/Walk raises funds to help support Huntington’s disease (HD) resources in the Bay Area. Consider helping in the fight against HD, a rare, fatal, genetic brain disorder that has NO CURE. What is HD

The event is FREE to Join:  https://pacificreg.hdsa.org/about/2020-san-jose-team-hope-walk   

Donations are welcomed and appreciated.

Make a Donation here 

Sports Basement is offering great discounts from June 13 through June 28th.  If you are a Basementeer you receive another % off, and you can designate the nonprofit, HDSA, as your charity to donate a certain % of your purchase to them.  It’s FREE money for HDSA and doesn’t take any work at all. https://shop.sportsbasement.com/

Sign up to be a Basementeer:  https://shop.sportsbasement.com/products/basementeer-membership-1  BASEMENTEER LIFETIME MEMBERSHIP $25.00 ONE-TIME FEE

Please share with friends, and family and post on your social media platforms.
Sports Basement locations:   Berkeley, Novato, Campbell, Presidio, Redwood City, San Francisco Bryant St., San Ramon, Santa Rosa, Sunnyvale, Walnut Creek.  https://shop.sportsbasement.com/blogs/stores

We Can Never Lose HOPE….

A Love Story

A Land of Hope and Dreams

Author Therese Crutcher-Marin

We all know how music and the lyrics to a song can trigger emotions and take us back to different times in our lives.   Music can touch your soul; reminiscent of special times in your life or challenging ones.

In the AFTERWORD section of the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, I wrote a poem.  I’m really not a poet but Bruce Springsteen’s song, Land of Hope and Dreams, inspired me to write about my own hope and dreams in the mist of living with the threat of Huntington’s disease. 

To purchase the book, go to:   amazon.com/Watching-Their-Dance 

https://www.barnesandnoble.com/w/watching-their-dance-therese-marie-crutcher-marin/1126082854

100% of the cost of the book is donated to the nonprofit, Huntington’s Disease Society of Americahttp://hdsa.org 

An excerpt: 

“We’re all riders on a train traveling through life.  The choices we make on the journey determine the weight of our load.  When confronted with tough times, many discover they must lighten their load. 

John Anthony Marin, my key rider, willingly disembarked in 1978, while I struggled with the direction of my train.  Eventually, I circled back to find him waiting patiently for me.  He boarded my train again, and together, we rolled through the fields of life where sunshine streams and set a new destination, a land of hope and dreams.” 

We Can Never Lose HOPE…..   

Please visit my author website for more information on Huntington’s disease and book:  https://theresecrutchermarin.com

 

 

Family

Phyllis Iva (Cahoon) Marin & Huntington’s Disease

MAY IS HUNTINGTON’S DISEASE AWARENESS MONTH  #LetsTalkAboutHD

Phyllis Marin

My mother-in-law, Phyllis Iva (Cahoon) Marin, who I never met, had Huntington’s Disease (HD).  What is Huntingtons disease

Phyllis & Cindy

John and his sisters, Lora, Marcia and Cindy don’t know a lot about her, their father never discussing her with them.  So, I too, know very little but here’s what I do know.

She was admitted to Napa State Mental Hospital around 1950 on a part time basis.  At that time she had two babies, Lora and Marcia, and she could not care for them.  The doctors did not know what was wrong with her, and because she came home, she had two more children, Cindy and John.  When Cindy was born, she was given to John’s Aunt Adeline and when John was born he was given to his Aunt Connie because Phyllis was unable to care for four children under the age of five.

Lora, Marcia & Cindy

Lora and Phyllis

She died in 1968 of strangulation as she got tangled up in the restraints the hospital had on her because her chorea was so bad.  The underlying cause of her death was stated to be Huntington’s Chorea.  History of Huntington’s Disease

This is such as sad story, but not unusual as Huntington’s disease family stories are always heartbreaking.

We Can Never Lose HOPE….

Author Therese Crutcher-Marin

My Author Website  https://theresecrutchermarin.com

May is HD Awareness Month

Let’s Talk About Huntington’s Disease

HELP US TURN UP THE GLOBAL VOLUME

ON HD AWARENESS!

#LetsTalkAboutHD is a social media initiative during Huntington’s Disease Awareness Month in May to encourage families to share their experiences with HD…It can be a video, a photo or a written story – Huntington’s disease (HD) impacts every family differently and it’s time the world knows our story.  For info on HD click here

Post videos, stories & photos to social media using #LetsTalkAboutHD to educate the world about the devastating impact that HD has on families.

#LetsTalkAboutHD Resources

http://hdsa.org/this-may-letstalkabouthd/

 

We Can Never Lose Hope….

Therese’s Author Website:  https://theresecrutchermarin.comWatching the Dance Huntingtons Disease

Volunteers

Volunteer Appreciation Week

National Volunteer Week is April 19-25 this year and it’s an opportunity to celebrate the impact of volunteer service and the power of volunteers to tackle society’s greatest challenge, to build stronger communities and be a force that transforms the world. 

I’m shouting out a Huge THANK YOU  to all the Huntington’s Disease Society of America (HDSA) volunteers across the country.  Thank you, Thank you, Thank you and Thank you.   

I’ve been a volunteer for the nonprofit, Huntington’s Disease Society of America, Inc. (HDSA) for the past four (4) years and currently I serve as the Chair for the San Francisco Bay Area Affiliate. To find out more about the affiliate, click here: San Francisco Bay Area Affiliate

HDSA is 90% volunteer based which is incredible with 55 Chapters/Affiliate across the U.S.  All the Chapters/Affiliates that are all managed by volunteers and each of them host a Team Hope Walk every year to raise dollars for research, to support 50 Centers of Excellence and other resources to improve the lives of everyone affected by HD and their families.  For more information on Huntington’s disease, click here:  http://hdsa.org

I’m blessed to work with awesome people who are passionate about helping in the fight against Huntington’s disease in the Bay Area.  These folks, volunteers, give unselfishly of their time and energy even though they have family members struggling with Huntington’s disease (HD) and who are they themselves at risk for the disease.

We Can Never Lose HOPE……………

      Therese at the 2018 HDSA Annual Convention in LA.

 

May is HD Awareness Month

HDSA Team Hope Walk Program Goes Virtual

Author Therese Crutcher-Marin

The battle against Huntington’s disease rages on and we need you to join TEAM HOPE- VIRTUALLY! 

In these extraordinary times it’s important to stay active and continue to support the HD community. That’s why – as we follow health department guidelines to help limit the spread of COVID-19 – HDSA is taking its Team Hope Walk program VIRTUAL to Kickoff HD Awareness Month!

Join the San Francisco Bay Area Affiliate – and Chapters all across the country – for a nationwide Virtual Team Hope Walk on Saturday, May 2nd!         

A virtual walk is a real walk, but on your terms. You get choose your own course. Now, you can take part wherever you are…from the comfort and safety of your own home, around your yard, or even your neighborhood (following social distance guidelines, of course).

Sign up, IT’S FREE and you can support HDSA’s Mission programs in your community.

Visit:  http://www.hdsa.org/thwsanjose      or           http://www.hdsa.org/thwsanfrancisco

We Can Never Lose HOPE……

 

A Love Story, Watching Their Dance

In My Hands I Held My Dream

Even during this difficult time with the pandemic, I find joy and peace in reflecting upon the seven (7) year journey I conscientiously took, to write and publish a book, hoping it would soothe my soul.

Three years ago, I received at my home, the first shipment, 300, of the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. It was a surreal feeling, holding a book in my hand.

This journey helped me fight through the complicated grief that I’d been stuck in.  As I wrote my story, and crafted the words on paper, it validated what John and I had lived through.

In April 2017, having healed, I could now talk about my three sisters-in-law, Lora, Marcia and Cindy who were struck down early in their lives by the insidious Huntington’s Disease, without crying.

Author Therese Crutcher-Marin Book Signing in Auburn CA

For the next several days, John and I had fun addressing approximately 30 books to mail to those who ordered a copy on my author website.  I also had two local book signing events to organize; April 29 and May 7, 2017.  https://www.theresecrutchermarin.com

It was a very exciting time for me as my dream came to fruition. To read Watching Their Dance book reviews, click here: https://theresecrutchermarin.com/goodreads-review/

 

     

The following is my personal tag line that I write in every book I sell.

We Can Never Lose Hope……….