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……………

About Author

Change

Choice, Chance and Change: The Three C’s of Life. https://www.habitsforwellbeing.com/the-3-cs-of-life-choices-chances-changes/  

When you make a choice, you change the future.

The huge uncertainty I chose to live with, John had an unknown gene status for Huntington’s disease (HD), the cruelest disease on the planet, caused a huge CHANGE in my life. His 50/50 chance of inheriting this rare, fatal, incurable brain disorder that is like having ALS, Parkinson’s and Alzheimers symptoms at the same time taught me to live in the moment, to live mindfully, which enriched my life.

Through the years, my heart opened up to forgive more easily which lead to loving unconditionally. Even with the sadness John and I experienced, my three sisters-in-law died of complications from HD, made me appreciate and be grateful for everything I had in my life.

Therese is the author of the nonfiction, Watching Their Dance, an inspirational love story while living in the shadow of Huntington’s disease. Therese has received four excellent book reviews from Kirkus, Goodreads, BookLife and Stanford University. To read the reviews, go to: https://theresecrutchermarin.com/goodreads-review/ 

We Can Never Lose HOPE…….

 

About Author

Take a Chance

Choice, Chance, and Change: The Three C’s of Life. It’s all up to you. It’s scary or empowering depending on how you look at it. https://www.habitsforwellbeing.com/the-3-cs-of-life-choices-chances-changes/  

When I decided to marry John, and took the chance that he had not inherited the mutated huntingtin gene for the worst disease on the planet, Huntington’s disease (HD), I knew the possible consequences of my decision. It may sound strange, but living at risk for HD changed my life for the better; I began living in the moment, enjoying what I had in front of me.

HD is a rare, fatal, incurable brain disease that is like having ALS, Alzheimers and Parkinson’s symptoms at the same time. http://www.hdsa.org

https://www.habitsforwellbeing.com/the-3-cs-of-life-choices-chances-changes/

I’ve never regretted taking the chance as it made our love stronger. In 2016, after living at risk for decades, John tested because he felt he owed it to Keith and Vanessa, our children who were getting married. Thank goodness he tested negative. We are very lucky and grateful because he had a 50/50 chance of inheriting the disease like his three sisters, Lora, Marcia and Cindy.

We Can Never Lose HOPE……..

Therese at the 2018 HDSA Annual Convention in LA.

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is an inspirational love story while living in the shadow of Huntington’s disease. Therese has donated $14,115.00 to the nonprofit, Huntington’s Disease Society of America, which is the profit from the book since publication in April 2017. Author website: http://www.theresecrutchermarin.com

A Love Story

Choices-A Fork in the Road

Choice, Chance and Change: The Three C’s of Lifehttps://www.habitsforwellbeing.com/the-3-cs-of-life-choices-chances-changes/  

Woody Guthrie Festival 7-2017

 

When I was 22 years old, I had to make the most difficult decision (choice) of my life. I was in love with a man I planned to marry after I graduated from California State University, Sacramento. I was at a fork in the road; marry John and live with the uncertainty of Huntington’s disease (HD) or walk away from the love of my life. HD is a rare, fatal brain disorder that is like having ALS, Alzheimers, and Parkinson’s at the same time. There is no cure. The famous folk singer, Woody Guthrie, had HD. info on HD

FORK IN THE ROAD is a metaphor, based on a literal expression, for a deciding moment in life or history when a major choice of options is required. https://www.success.com/13-quotes-about-making-life-choices/

Many of us have hard choices in our lives; I’ve never met anyone who hasn’t, as it is part of life. Some choices may be more difficult than others; leaving the man I loved who never hurt me or making a choice to stay, was mine.

Fortunately, I had an epiphany which lead me back to my love, John Anthony Marin. 

To help in the fight against Huntington’s disease, that killed my three (3) sisters-in-law, at young ages, John and I are donating 100% of the proceeds from Watching Their Dance, a love story while living in the shadow of HD, to the nonprofit, Huntington’s Disease Society of America (HDSA).  To date, we have donated over $14,000.00.  amazon.com/Watching-Their-Dance-

Huntington's Disease

Today is Rare Disease Day

In the United States, the Rare Diseases Act of 2002 defines rare disease strictly according to prevalence, specifically “any disease or condition that affects fewer than 200,000 people in the United States”, or about 1 in 1,500 people.

With that said, Huntington’s Disease (HD) is a rare disease since it affects approximately 30,000 people in the U.S.   What-is-HD

Marjorie Guthrie

The poster child for HD is the famous folk singer Woody Guthrie who died of complications from HD on October 3, 1967. Marjorie Guthrie was instrumental in the quest to heighten HD awareness, and also connecting with the HD families in the United States. She started, The Committee to Combat Huntington’s Disease (CCHD) in 1967. To read more about the CCHD, go to https://hdsa.org/about-hdsa/hdsa-history/

I’m an HD advocate, having lost my three (3) sisters-in-law to the disease. I volunteer for the nonprofit, Huntington’s Disease Society of America (HDSA) to help in the fight against this horrible disease that affects families for generations. I’m currently working with a group of HD advocates to organize a HDSA Affiliate in the San Francisco Bay Area which, hopefully, in a couple of years will evolve into a HDSA SF Bay Area Chapter. https://hdsa.org/about-hdsa/chapters-affiliates/

Author Therese Crutcher-Marin

100% of the proceeds from Therese’s book is being donated to HDSA. Since publication, Therese has donated $14,115.00. Her author website is: http://www.theresecrutchermarin.com

We Can Never Lose HOPE…..

Resources

Huntington’s Disease Support Groups & Online Support Groups

Ts sign up for the ONLINE support group, go to this website:   https://www.supportgroupscentral.com/groups_

_____________________________________________________________________________

The UC San Francisco Huntington’s Disease Clinic website:  https://www.ucsfhealth.org/clinics/huntingtons_disease/

UC Davis HD Clinic website:  https://health.ucdavis.edu/huntingtons/

Kaiser HD/Genetic Movement Disorders, Sacramento: https://mydoctor.kaiserpermanente.org/ncal/specialty/genetics/specialty_clinics/huntington_disease.jsp

 ____________________________________________________________________________

Melissa Billardi, HD advocate, Founder, President, CEO of HD Support & Care Network, offers a weekly call in support type group.  It is on Thursdays on See Me HD Group Call at 1:00 pm PT/4:00 pm ET   Join from computer:  https://PMDAlliance.zoom.us/j/769346544  

Or Telephone: Dial: +1-408-638-0968 (US Toll)
Or +1-646-558-8656 (US Toll)
Meeting ID: 769 346 544

Melissa’s Facebook page and HD Support & Care Network website:

https://www.facebook.com/Mbiliardi           http://www.hdscn.org/

We Can Never Lose HOPE………….

 
100% of the profit from Watching Their Dance is being donated to Huntington’s Disease Society of America (HDSA).  Therese has  donated $14,115.00 to HDSA which was the profit from book/ebook sales since April 2017 when it was published.  .amazon.com/Watching-Their-Dance-Marrying-Huntingtons/dp/0998442208
 

 

 

 

Storytelling

Excerpt from “Watching Their Dance”

Nonfiction story of Life At Risk for HD
John and Therese Marin
Therese at the 2018 HDSA Annual Convention in LA.

Chapter 7 Life At Risk

“I was ecstatic that John and I were finally living under the same roof. Our split-level apartment had two bedrooms, one bathroom, a cute kitchen with a bay window that my coleuses loved. Upstairs was a dining area and a sunken living room with a stone fireplace; a sliding-glass door opened onto a little balcony that overlooked a creek.

Anyone looking at us would have seen a happy, well-matched couple starting what seemed a wonderful life together. Little would they know the challenge that lay quietly beneath our joy. Every day, I consciously reminded myself to live in the present moment. It was the small stuff I savored: waking up next to John, seeing him every night, eating dinner together, talking about our day, feeling his arms around me. Those moments were precious, and I selfishly saved them just for me.”

Living At Risk
Living At Risk
Living At Risk

We Can Never Lose HOPE……

John and Therese have gifted $14,115.00 to the nonprofit, Huntington’s Disease Society of America (HDSA) which is the profit since the book was published in April 2017. Therese Crutcher-Marin’s author website http://amazon.com/author/theresecrutchermarin

About Author

Living At Risk for Huntington’s Disease

Author Therese Crutcher-Marin
Christmas in 1976 when John & I were in college

No one can image what it is like to Live At Risk for the cruelest disease on the planet; Huntington’s disease. What-is-HD This rare, hereditary brain disorder, is like having ALS, Alzheimers and Parkinson’s at the same time, has no cure and strikes during prime working years. It’s difficult to understand, unless you have lived it.

This picture describes the process I went through when John and his three sisters discovered they were at risk for Huntington’s disease. https://www.habitsforwellbeing.com/the-3-cs-of-life-choices-chances-changes/

First, I had a CHOICE; to marry John and live a life AT RISK or turn away from him forever.

I took the chance & lived happily every after

Second, I took the biggest CHANCE of my life and married him knowing the possible consequences of my decision.

Third, in order to live fully everyday with the love of my life, I had to CHANGE my way of thinking.

Fortunately, John did not inherit the mutated huntingtin gene. huntingtin protein and protein-aggregation Huntington’s disease enriched my life because John nor I took anything for granted.

100% of the profits from Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is being donated to the nonprofit, HDSA. Therese has gifted $14,100.00 to HDSA since publishing the book in April 2017. amazon.com/Watching-Their-Dance

We Can Never Lose HOPE….

About Author

The Truth About Living At Risk for Huntington’s Disease

“Uncertainty is the only certainty there is, and knowing how to live with insecurity is the only security.” ~John Allen Paulos

John and I lived AT RISK for the cruelest  disease on the planet, Huntington’s disease (HD), for 38 years.  It was in 2016, that John decided he wanted to know his gene status.  Many years ago, the genetic test became available in 1993, I asked him to have the test done, but he couldn’t, and I understood why.  5-tips-for-living-with-uncertainty/

Why wouldn’t John test, you ask?  The reason “why”was staring at both of us everyday for 28 years; that being the faces of his three sisters who died because of HD. John didn’t want to know; hope was what he and I clung to, as well as to each other.

Lora, Cindy, Marcia Marin

John’s oldest sister, Lora, my dear friend, was never tested or diagnosed because she began showing symptoms in 1982 and no test was available.  She became very depressed, a common first psychiatric symptom of HD.  Living AT RISK for Huntington’s disease was emotionally difficult for Lora and I  knew it and so did John and we tried to help but the stress lead to her demise.  Lora chose to self-medicate with alcohol, and, unfortunately, she drank herself to death.  We lost her in 1989 at age 41.  What-is-HD

I know how this sounds, morbid, but the world has no idea of what it is like to live with unimaginable uncertainty every day.  Living with the fact that your world could change overnight, how you could be struck down with the disease at the prime time of your life, and then, how you would slowly lose your ability to walk, talk and think over a ten to twenty period of time, is beyond the word difficult.  what-is-high-functioning-anxiety

It’s estimated that approximately 200,000 live AT RISK in the United States and an unknown number exists throughout the world. Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is the story of how I survived living in the shadow of Huntington’s disease, waiting and watching ever so closely to see who of the four people I loved, would fall prey to HD;  John, Lora, Marcia and/or Cindy Marin. amazon.com/Watching-Their-Dance

Author Website:  http://www.theresecrutchermarin.com

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We Can Never Lose HOPE……

Huntington's Disease

Prevalence of Huntington’s Disease in the U.S.A.

Have you ever wondered where Huntington’s disease (HD) originated? Or why it’s predominantly found among Europeans and those of European descent? What-is-hd/

Europe

Most scholars believe that European migration was what brought HD alleles into the continents of North America, South America, Australia and New Zealand, and the prevalence of HD in these regions is now similar to that of Europe, where HD affects around 40-100 per million people. (or 4-10 per 100,000)

Experts estimate that one in every 10,000 persons—nearly 30,000 in the United States—have Huntington’s disease. (10 in 100,000, 100 in a million). Juvenile Huntington’s occurs in approximately 16% of all cases. http://web.stanford.edu/group/hopes/cgi-bin/hopes_test/hd-in-europe/

100% of the profits from the book, Watching Their Dance, an inspirational love story while living in the shadow of HD, is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). Since the book was published, in April 2017, Therese has donated $14,100.00 to the nonprofit, Huntington’s Disease Society of America.

Therese at the 2018 HDSA Annual Convention in LA.