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The Marin Siblings

The Marin Siblings, Watching Their Dance

Marcia Wasn’t Angry But I Was

My sister-in-law, Marcia Louise Marin, was the kindest and most unassuming woman I have ever met.  After high school, in 1968, Marcia got a job in the typing pool at Pacific Telephone in the financial district of San Francisco. Marcia advanced in her job quickly to become a professional marketing rep who demonstrated to new businesses how to use their telephone system.  She was a stunning, sheek, professional woman who I admired.   

Unfortunately, she was struck down by Huntington’s disease (HD) at a young age, and watching her decline was very difficult for me.   Needless to say, Huntington’s disease angered me for cutting Marcia’s life, her independence, her career short and leaving John, Keith, Vanessa and myself at age 49.                                      

Watching the Dance Huntingtons DiseaseWhen Marcia died from HD complications in September 1999, John and I held a Celebration of Life at Lassila Funeral Chapel in Auburn California.  At the Celebration, I spoke or really choked on my words to remember Marcia.  The following paragraph is an excerpt from Chapter 31, page 257 of my nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.

“Marcia was one of the sweetest people I’ve ever known.  How I wish her life had been different.  We supported her through the years, dealing with delicate subjects and situations.  She was such a sweetheart, always giving us a look of gratitude that tugged at our hearts.  I watched her with awe and wonder, because she never complained or uttered words of anger.  She never cursed God for her fate and accepted her destiny.”   

We Can Never Lose Hope……             

I’m a Huntington’s disease (HD) advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.  Visit my website  https://theresecrutchermarin.com

Love, The Marin Siblings

The Rememberer Role for Lora, Marcia & Cindy Marin

Today is the last day of May 2022, Huntington’s Disease Awareness Month  

Author Therese Crutcher-Marin

Every year during Huntington’s Disease (HD) Awareness Month, my thoughts focus on my three (3) sisters-in-law, Lora, Marcia and Cindy, who died from HD complications.

I am Lora, Marcia and Cindy’s Rememberer, one who remembers, a precious role that I have embraced for the rest of my life.  I remember them in many ways; I write blogs about them, volunteer for the nonprofit Huntington’s Disease Society of America, I penned a book to create their legacy, our family talks about them often and every night before I go to sleep, I pray there will be a therapy/cure for this horrific disease in my lifetime.

Lora, Cindy, Marcia Marin

Please help the nonprofit, Huntington’s Disease Society of America (HDSA) San Francisco Bay Area Affiliate fight this disease by donating to fund research, two (2) HD clinics at Stanford and UCSF Medical Center, three (3) local HD support groups, online support groups, and many free online resources.

Thank you in advance.  Please Make your donation here.

We Can Never Lose HOPE…

The Marin Siblings

Huntington’s Disease Symptoms Can Present Differently in People

Author Therese Crutcher-Marin

I consider Huntington’s disease (HD) the cruelest disease on the planet and I wish and pray there will be a cure or a therapy to help with symptoms in the near future.   HD is a rare, inherited disease that causes the progressive breakdown (degeneration) of nerve cells in the brain and has a broad impact on a person’s functional abilities and usually results in movement, thinking (cognitive) and psychiatric disorders. THERE IS NO CURE!

HD symptoms vary by individual and I’m not sure the experts can explain why that happens.  My three (3) sisters-in-law, Lora, Marcia and Cindy inherited the mutated huntingtin gene from their mother and symptoms were different with each one of them.

HD affected Lora psychologically and she exhibited deep depression.  Depression appears to occur because of injury to the brain and subsequent changes in brain function.  Lora self-medicated with alcohol and developed cirrhosis of the liver, took a bad fall, and died of a cerebral hemorrhage at age 41.

HD affected Marcia’s gait, posture and balance that surfaced when she was 34 years old to a point where she could no longer work.  Her co-workers thought she was drunk because she was falling off her high heels. Chorea manifested severely and swiftly and it was so acute at times that she broke the foot rest on her wheelchair twice. She fought HD for 15 years and died at age 49.

HD symptoms in Cindy were different than her two (2) sisters and they appeared quickly at age 41.  Cindy was an athlete and even after symptoms presented she continued to cycle, walk, ride a horse, kayak, run with many accidents sending her to the hospital.  When riding a horse, she fell and her foot caught in the stirrup which broke her ankle and she had to have surgery to repair it.  Cindy developed severe dystonia which can present as involuntary muscle contractions that result in slow repetitive movements, cramps, or abnormal posture. Cindy fought HD for 14 years and she died at age 53.

We Can Never Lose HOPE…..

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Love, The Marin Siblings

The Holiday Season

The holiday season this year is a special one for John and I compared to last year when COVID-19 kept us sheltered in place.  Thanksgiving and Christmas were spent alone at our Tahoe cabin, face timing with our children.                                                     

Much to our delight, this year we became first time grandparents to a beautiful little girl, Marlena Cynthia Joan Marin.   This years’ holiday will be filled with the sound of Marlena’s giggles, hugs, kisses, the ripping of Christmas paper and new toys for her to play with.

As we celebrate, John and my thoughts are not far from his sisters, Lora, Marcia and Cindy, who died from Huntington’s disease (HD) complications.  I cling to the many happy holidays we shared together before HD impacted our daily lives.  John struggles with survivors guilt as the four (4) siblings were especially close and I find it helpful to talk about them with John, not about their HD journey, but the good times we shared.

We Can Never Lose HOPE…..

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.  Visit my website:  https://theresecrutchermarin.com

Please make a donation to the nonprofit, Huntington’s Disease Society of America, to help fight HD.     Thank you.

 

Grief, The Marin Siblings

Enormous Sadness

Sadness is an emotional pain associated with, or characterized by, feelings of disadvantage, loss, despair, grief, helplessness, disappointment and sorrow.

My husband’s family has a history of Huntington’s disease; a rare, fatal, genetic brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimers simultaneously. 

When each of my sisters-in-law, Lora, Marcia and Cindy, began to exhibit symptoms of Huntington’s disease (HD), twitches, deep depression, unsteady gait, personality changes, a wave of sadness settled deep in my heart. As I watched Lora self-medicate and be deeply depressed, as Marcia’s co-workers thought she was drunk, as Cindy became unable to give correct change to customers, I recognized that John, myself and the sister were starting down a long, unpredictable, rocky road called Huntington’s disease.

I carried the enormous sadness deep inside my heart, keeping it in check, never allowing it to raise its ugly head.  But, as each sister-in-law fell into the grips of HD,  my heart became so heavy I almost couldn’t breathe.  The sadness I carried found a way out through symptoms I experienced; i.e. panic attacks so severe I carried a paper bag with me, nightmares, insomnia, cry’s bubbling out of me into night that my pillow was unable to muffle.

Fortunately, I found my way to a wonderful local psychologist I saw once a week that, with her expertise, calmed the pressure cooker sadness I carried in my heart.

We Can Never Lose HOPE…..

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.  Visit my website:  https://theresecrutchermarin.com

 

 

 

 

 

 

The Marin Siblings

Through The Eyes Of An Artist

My daughter, Vanessa, is a gifted artist and a few years ago she gave me a wonderful gift.

My husband, John, has Huntington’s Disease (HD) in his family.  Since his mother had the disease, he and his three (3) sisters we at risk for this fatal, rare, genetic brain disorder that has NO CURE.  41,000 Americans have the disease and approximately 200,000 live at risk.

The four (4) siblings were very close, so as each sister developed HD symptoms we moved them close to support them in their HD journey.  Over 24 years, our children, Keith and Vanessa, witnessed the disease progression in their aunts, starting at very young ages.  Needless to say, it was difficult for all of us.

A few years ago, Vanessa painted a picture that soothed my soul and made the hole in my heart a little smaller.   The picture is a mural on the wall in my home office.  It depicts three figures, I see angels, traveling to heaven. 

Because Vanessa was emotionally affected by the aunts HD experience, I believe, she painted the mural for her own mental health and took another step to always remember them; she tattooed the angels on her back.

We Can Never Lose HOPE………

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.  Visit my website:  https://theresecrutchermarin.com

Please make a donation to the nonprofit, Huntington’s Disease Society of America, to help fight HD.

 

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)

 

 

The Marin Siblings

Marcia Louise Marin

Marcia Louise Marin would have been 71 years old today.  Happy Birthday, Marcia! 

I celebrate this day in her memory and acknowledge the strength, courage, tenacity, positivity and kindness that Marcia showed toward me and others.  She was the second child born to John and Phyllis Marin, and having a parent with Huntington’s disease (HD) Marcia had a 50/50 chance of inheriting the mutated huntingtin gene from her mother, Phyllis Iva (Cahoon) Marin.   

Lora, Cindy and Marcia Marin

Marcia, at the young age of 30, was the first of my three sisters-in-law to show symptoms of Huntington’s disease. What is Huntingtons disease

Marcia’s first symptoms, that I noticed in 1980, were twitches and an unsteady gait. By the time she was 34 years old, she was retired from AT&T; unable to continue working because of forgetfulness, loss of concentration and coworkers and supervisor believing she was drunk on the job. She struggled with Huntington’s disease for 15 years and died on September 8th, 1999 at age 49.

I wish her story had been different and we could have enjoyed life together.  I wish my children, Keith and Vanessa, could have had time with this wonderful person who would have been an awesome aunt.

Author Therese Crutcher-Marin

The nonfiction book, 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 with the uncertainty of my husband, John, inheriting the fatal brain disorder, Huntington’s disease, which has NO CURE.  book reviewsWatching the Dance Huntingtons Disease

100% of book sales is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). Available on amazon and many other book websites. My author website:  theresecrutchermarin.com

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

Love, The Marin Siblings

A Letter to the Mother-in-Law I Never Knew

Phyllis Iva (Cahoon) Marin, the mother-in-law I never knew, has been on my mind through the years.  I wish I’d known her and I feel cheated not to have had her in my life. I’ve written a letter to her to express my feelings.

Dear Phyllis, 

My name is Therese Marie Crutcher-Marin and I married your kind-hearted son, John Anthony Marin and we will celebrate 40 years of marriage on Sept. 27th. 

I want to thank you for giving him to the world, a world where I was able to find him.  He is the love of my life and I’m ashamed to say I almost didn’t marry him, out of fear, because of the threat of Huntington’s disease.  If John had inherited the mutated huntingtin gene and became ill, I would have taken care of him, since that’s what I believe you do for the people you love.    

Your three daughters, Lora, Marcia and Cindy, were also benevolent, compassionate women and you would have been proud of the kind of people they became as adults.  I loved these women like they were my own sisters and I miss them everyday.  Unfortunately, Huntington’s disease stole them away from us, but rest assured, John and I took care of them through their long journey’s with this horrific disease.  

I find comfort knowing that the four of you are together in heaven, as it should be, a mother with her children, and I pray your souls find peace spending eternity together with our loving Father. 

I’m looking forward to meeting you one day.

Your devoted daughter-in-law, Therese

 

We Can Never Lose HOPE….

My author website is:  https://theresecrutchermarin.com

Author Therese Crutcher-Marin