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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

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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:    http://www.theresecrutchermarin.com   

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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 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: http://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……………

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

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……

About Author, Family

Knowledge is Power

In January of 1988, after Vanessa was born, John and I decided that I wouldn’t return to work and stay home for a couple of years while the kids were young.   John was making good money at Placer County, and we had money in our savings account, so I was comfortable living on one paycheck. A Walkthrough Guide to Panic Disorder  

At the time, I had two sisters-in-law, who lived locally, challenged by Huntington’s Disease (HD); Lora, severely depressed and drinking herself to death and Marcia, officially diagnosed at UC SF Medical Center two years earlier.  What is HD A few months after I resigned from my management job in Sacramento, I began having panic attacks.  John’s unknown gene status weighed heavily on my mind.  A Walkthrough Guide to Panic Disorder   

To ease my anxiety, I decided to pursue a Masters degree in Healthcare Administration.  Additional education, I felt, made me more marketable, and would replace time lost in the workforce.  I believe knowledge is power and as I studied I became confident that I would secure a job at our community hospital in Auburn, CA which I did in 1991.

The Sacramento Team HOPE Walk is Sat., Sept. 8, at the River Walk Park in Sacramento. To register or make a donation to the event, go to: http://www.hdsa.org/THWSacramento 

 

 

 

About Author

How Huntington’s Disease Has Affected My Life

May is Huntington’s Disease Awareness Month

Huntington’s disease is a fatal, hereditary brain disorder that progressively destroys the nerve cells in the brain.  It’s like having ALS, Parkinson’s and Alzheimer’s all at the same time.  There is no cure or therapy.

#LetsTalkAboutHD               #HDAwarenessMonth

#WeCanNeverLoseHOPE    #WatchingTheirDance

Therese will be selling her memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, at HDSA Convention in Los Angeles, June 7-9, 2018.  The book is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format. 100% of the profit from the book is donated to HDSA. 

Therese and John donated $9,015.00 to Huntington’s Disease Society of America (HDSA) which was the profit from her book since she published in April 2017.