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The Marin Siblings

A Love Story, The Marin Siblings

That’s How Love Moves

That’s how love works………That’s how love moves……..

Like a river running through you………lyrics from That’s How Love Moves by Faith Hill.

Once John wrapped his arms around me, I was never the same.  He saw something in me that I never knew I had…………………. courage.  Courage to love despite the enormous challenge that lay ahead in the years to come.

The challenge?  Huntington’s disease (HD); the cruelest disease on the planet.  A rare, fatal, genetic brain disorder that has all the symptoms of ALS, Alzheimers, and Parkinson’s at the same time and their is NO CURE.  John and his three (3) sisters were at risk, a 50/50 chance, for inheriting the horrific disease that destroyed their mother.  What is Huntington’s disease?

Lora, Cindy and Marcia Marin

The unconditional love I had for the Marin siblings and the love John had for me, saved me; saved me in every way possible.  Love kept me grounded, even during the worst of times when I was desperate to escape from the 24-year nightmare; watching his three sisters battle HD.

We Can Never Lose HOPE……..

100% of the proceeds from the nonfiction book, Watching Their Dance, is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA) to help in the fight against Huntington’s disease.

Therese’s Author Website: https://www.theresecrutchermarin.com

 

 

 

 

Huntington's Disease, The Marin Siblings

Huntington’s Disease Impact Through the Generations

Phyllis Marin

Most of John’s relatives, did not know or understand the magnitude and the impact of Phyllis’s diagnosis of Huntington’s disease (HD) on the four Marin siblings lives.

Because Phyllis had HD, Lora, Marcia, Cindy and John each had a 50/50 chance of inheriting this horrific disease with no test, at the time, and no cure or therapy.  HD is a rare, fatal, genetic brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimers at the same time, strikes during prime working years, is a long progressive disease and has no cure.  Sixteen percent (16%) of HD cases are children with Juvenile HD.      http://www.hdsa.org

Their story is not unusual and I’ve heard similar stories from families in the HD community; one of secrecy, deception and misdiagnose.  John’s father never told the siblings about their mother and they had to discover on their own why Phyllis was in Napa State Mental Hospital for 18 years.

Through the years I have come to believe their father did this to protect them, but it still seems unfair to have kept this information a secret. 

Lora, Cindy and Marcia Marin

 

 

We Can Never Lose HOPE………………..

100% of the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is being donated to the nonprofit, Huntington’s Disease Society of America.  To date, $14,100.00 has been gifted to HDSA.

Author website:  https://www.theresecrutchermarin.com

 

Watching the Dance Huntingtons Disease

 

 

HDSA Fundraising events, The Marin Siblings

John & Therese Marin Team Hope Walk

John and I are participating in the HDSA Sacramento Team Hope Walk on Sept. 8th, 2018 to help in the fight against Huntington’s disease that killed my 3 sisters-in-law, Lora, Marcia and Cindy. Click here to register or to make a

Lora, Cindy and Marcia Marin

donation:  https://hdsa.donordrive.com 

We are so grateful John tested negative for the mutated Huntingtin gene in 2016.  I’m on the Huntington’s Disease Society of America (HDSA) Northern California Chapter Board of Directors organizing fundraisers and heightening awareness. http://www.hdsa.org

LUNCH IS PROVIDED WHEN YOU REGISTER 

 

We Can Never Lose HOPE……

 

Grief, The Marin Siblings

What is Survivor Guilt?

My husband, John, suffers from Survivor Guilt since he survived Huntington’s disease when his three sisters did not.  It’s not uncommon for guilt to arise in grief.

“On a basic level, survivor guilt is exactly what it sounds like: a sense of deep guilt that comes when one survives something.  If you have heard of survivor guilt before what likely comes to mind is survivors of wars, natural disasters or other traumas.  Survivor guilt was actually first documented and discussed after the Holocaust and what has become clear in the decades that have followed is that survivors’ guilt is far more common than was initially understood.”

Articles on survivor guilt

 https://whatsyourgrief.com/understanding-survivor-guilt/ 

https://www.psychologytoday.com/us/blog/how-be-yourself/201711/six-tips-handling-survivor-guilt

So when might one experience survivor guilt?

-After causing an accident in which others died
-Guilt for not being present at the time of an accident to potentially save the person who died
-When a child dies before a parent
-Death of a sibling, especially in the case of an illness

We Can Never Lose HOPE……

Author Therese Crutcher-Marin is donating 100% of the profits from her book to Huntington’s Disease Society of America.  https://www.amazon.com/-/e/B06ZY85776

 

The Marin Siblings

An Excerpt from “Watching Their Dance”

         May is Huntington’s Disease Awareness Month

Chapter 13 “A Genetic Marker”, page 113 

This chapter takes place in 1983 & 1984, which were two good years in so many ways for John and me, and Huntington’s disease, but turned tragic for Lora, John’s oldest sister. The Discovery of the HD Genetic Marker in 1983

Lora was in Starting Point in this scene, a drug/alcohol rehab center.

“Another issue weighed heavily on my mind, but I didn’t dare talk about it.  Because an early and prominent symptom of HD is depression, a person with Huntington’s can turn to alcohol as a way to self-medicate.  With all her other problems, Lora must have been terrified of having Huntington’s, because it wasn’t an abstract disease to her.  The memories of watching her mother’s struggle must have remained vivid in her mind.  

After John had attended four of Lora’s sessions, he came home with upsetting news. “Dave told the group that Lora’s hospital stay last year wasn’t about hepatitis B,’ I started nodding, ‘but the beginning of cirrhosis of the liver.’  

I gasped and my eyes starting filling with tears. “What did she say about me coming to her sessions? You told her I want to help, right?’ 

‘Yes, I asked her, Therese.’ He looked away. “She doesn’t want you there. She doesn’t even want me there, but I’m not going anywhere.  She’s so angry. I don’t think it would be good for either of you.'”

Read about Challenging Behaviors in Huntington’s disease 

From the above article:  “Substance Abuse or Dependence Includes alcohol or recreational drugs. Abuse or dependence on substances can mask and/or intensify behavior symptoms. May be used to “self-medicate” from the symptoms of HD. Interferes and/or disrupts daily life, social relationships, work performance, etc.”

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 profits from the book is being donated to Huntington’s Disease Society of America (HDSA).

We Can Never Lose HOPE………….

#LetsTalkAboutHD  #HDAwarenessMonth

#HDSTRONG #HDSAFamily

 

 

 

 

Mindful, The Marin Siblings

Excerpt from Chapter 18-Watching Their Dance

Chapter 18-A Pre-Symptomatic Test for Huntington’s Disease, Page 153-Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s

“I never forgot that John was now in the high-risk age range and would be for another eight to thirteen years.  Over the past few years, I had realized that this uncertainty, which I had take on willingly, had opened my heart to love much more deeply, and acknowledging that my world could change in a heartbeat made my life with John so much richer.  Life was just too precious to waste a minute arguing over any small stuff.  

Lora, John and Keith in our backyard in 1985. Lora was living with us.

I had learned to overlook shortcomings and compromise without anger.  And the Marin siblings had taught me about forgiveness and unconditional love, traits not common in my family.  I forgave Dave time and time again and never for a moment stopped loving Lora, even when she hurt my feelings.  

Letting go of the anger I felt when I couldn’t control a situation calmed my OCD to a manageable level, and lessing my anxiety allowed me to relax and find joy in the simple things.  Perceiving the future as a blank canvas helped, as did not dwelling on it.  Keith remained the best method of staying in the present, and I drew strength from being physically near John, ever the optimist.  Staying focused was key to this constant battle.” 

 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 sold in the U.S. will be donated to HDSA.  http://www.hdsa.org     Therese and John donated $9,015.00 to HDSA that is the profit from book sales since Therese published in April 2017.

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The Marin Siblings

Excerpt from Chapter 17-“Watching Their Dance”

Chapter 17-A Neurological Exam

“The morning Marcia was to learn her test results, I raised the shade in our bedroom and the sun poured in, brightening my mood for a moment.  Neither John nor I mentioned her as we got ready for work, and by the time I got to my office, my stomach was churning.  I had such a hard time getting anything accomplished, I grabbed a cup of coffee and went outside for a break.  I leaned against the building and prayed.

That evening, the room seemed to grow cold when Marcia called and I watched John’s reaction.  My big, strong man crumpled in front of me, slowly wilting and then bending in two like a broken twig. I grabbed the phone and said, “Hi.”  All of a sudden, Marcia started talking in a flat tone of voice.

‘You know, the last few months at work have been hard.  Many of my co-workers said I slurred my words and thought I was drunk.’  She paused for so long, I wasn’t sure she was going to continue.  After a minute, she blurted out, ‘I had to stop wearing high heels, because I was losing my balance.  My memory was getting so bad, I started writing myself notes.'”

We Can Never Lose HOPE……………………….Therese

Therese’s memoir, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is an inspirational love story that was inspired by Lora, Marcia and Cindy Marin. 100% of the proceeds from the book is being donated to Huntington’s disease organizations around the world.  To purchase book go to:  https://www.theresecrutchermarin.com 

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The Marin Siblings

The Positive Nature of the Marin Siblings

I met John and his sisters in 1976, and I quickly became closer to Lora, Marcia and eventually to Cindy than I was to my own sisters.  These four very special people taught me to enjoy life everyday, never give up on your dreams, look at the positive side of things and not dwell on the negative. They are the most positive people I’ve ever met in my life.

John continues to be Mr. Positive and his attitude never changed even during our darkest times when each sister struggled with Huntington’s disease.   http://hdsa.org/what-is-hd/    Though they are gone from our sight, they still inspire me.

There are many benefits to thinking positively.  Here’s one article:  Positive Thinking   

Read Norman Vincent Peale, author of Power of Positive Thinking, famous quotes.  You’ll be inspired!   https://www.goodreads.com/work/quotes/1121350-the-power-of-positive-thinking  

“Researchers continue to explore the effects of positive thinking and optimism on health. Health benefits that positive thinking may provide include:
  • Increased life span
  • Lower rates of depression
  • Lower levels of distress
  • Greater resistance to the common cold
  • Better psychological and physical well-being
  • Better cardiovascular health and reduced risk of death from cardiovascular disease
  • Better coping skills during hardships and times of stress”

Therese’s memoir, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is an inspirational love story that was inspired by Lora, Marcia and Cindy Marin. 100% of the proceeds from the book is being donated to Huntington’s disease organizations around the world.  To purchase book go to:  https://www.theresecrutchermarin.com 

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.

The Marin Siblings

Excerpt from “Watching Their Dance”

Chapter 17, page 147………………….

“When I woke up, Marcia, Cindy and John were at the kitchen table.  Marcia was giggling, and I was elated to see such a smile on her face.

What’s so funny?

Oh, we’re talking about Lora and the trouble she caused, Cindy said.  Remember the night the Mercury blew up, and the time she thought a convict was going to kill us all?  Lora always exaggerated.

I wondered if John and Cindy were laughing about the past, a common Marin coping mechanism, to defuse their own fears.  In addition to Marcia, how could they help being terrible afraid for themselves?

John couldn’t stop laughing.  Oh yeah.  She was coming home from Freddie’s Pizzeria late one night when the Mercury burst into flames, as Lora put it.  Dad should never have bought it, but when you’re a teenager, you don’t complain when you’re given a car, even if it’s a piece of shit.  Thank goodness, Uncle Jimmy was following her home.”

     

Lora, Marcia, Cindy and John were four mischievous little kids, left alone often by their father.  How could they not get into trouble?  Isn’t John cute!

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

The Marin Siblings

Watching Their Dance-Chapter 13

I hope you enjoy an excerpt from Chapter 13 in my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s https://www.amazon.com/author/theresecrutchermarin 

“Placer County proved to be an excellent place for John to work, since it was growing rapidly and offered many opportunities for a young professional.  Just after our third anniversary, a position became available in the planning department, and John got the job. He would assist the Placer County planning commission in preparing for growth, enforce the county’s zoning ordinance, and review and make recommendations on land development.

Both John and I worked with young married couples that were starting families. This opened a long conversation as to where or not we should have children. I was having a hard time getting past the risk involved, agonizing over bringing a child into the world when quite possibly condemning him or her to the life of uncertainty we led.”

100% of the proceeds from my book is being donated to Huntington’s Disease organizations around the world.

Watching the Dance Huntingtons DiseaseWe can never lose HOPE……………….Therese

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 file.