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#LetsTalkAboutHD, Family

The Marin Family Huntington’s Disease Story

May is #HuntingtonsDiseaseAwarenessMonth 

The Marin Family Huntington’s disease (HD) story is not unusual in the Huntington’s disease (HD) world.  John’s mother, Phyllis, had HD, was placed in Napa State Hospital and the four Marin siblings father kept her condition a secret.

When John and I became a couple and I got to know his three sisters, Lora, Marcia and Cindy, I asked about their mother and they could tell me nothing.

Lora, Cindy and Marcia Marin

Lora and Marcia confronted their father for information and he dismissed their concerns.  Marcia went to County of Napa and requested Phyllis’s death certificate; cause of death, strangulation and underlying cause was Huntington’s Chorea.

HD claimed the lives of my three sisters-in-law over a 25 year period of time.  Unfortunately, our children never really knew their aunts which was a tragedy in itself.  John and I were beside each of them on their HD journey.  Lora drank herself to death, Marcia had heart failure after struggling for 15 years and Cindy wasted away and experienced a sudden death after 17 years.

Visit www.hdsa.org a 501(c)3 nonprofit for more information about HD and join the fight. Please Consider making a donation . 

We Can Never Lose HOPE...

May 22, 2023 by
Family, Love

Under Love Is A Stronger Emotion

I’ve been involved with the Huntington’s disease (HD) community for many years and I have witnessed the resilience, courage and love within HD families.  I believe the emotion, Under Love is a Stronger Emotion  is Devotion.  (love, loyalty, or enthusiasm for a person, activity, or cause)  

Huntington’s disease is grueling, heart breaking, a stressful  condition for any family to bear.  HD families are devoted to their loved one, as John and I were to my three sisters-in-law, Lora, Marcia and Cindy.  It comes down to, “that’s what you do for the people you love”.

Two local families, the Miller and Granlund, who I personally know, have shown their love and devotion to their dad/spouse for years. The Miller and Granlund children, recently stepped up and formed a new committee, the HDSA San Francisco Bay Area Chapter HDSA National Youth Alliance (NYA) in honor of their fathers. NYA is a collection of children, teens, and young adults from across the country that motivates young people to get involved in their local HDSA Chapters, Affiliates, and Support Groups.

   

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

 

 

 

 

 

 

 

March 22, 2023 by
Family

Congratulations To Our Daughter, Vanessa Marin Garrett

I have to give a shout out to Vanessa Ann Marin Garrett, our lovely, talented, kind, smart daughter, who just completed her Master’s program in Public Administration while working full time as Director of Public Works at City of Rohnert Park, CA.  She began the program when COVID hit so it’s all been virtual.

                Congratulations!!!!!!John and I are so proud of her and the accomplishments she has achieved; she is a licensed professional civil engineer, athlete, artist and many other talents.

Also, it’s interesting that Vanessa received her degree from California State University, Long Beach and I received a Masters in Healthcare Administration from Cal State, Long Beach in 1990.  Like mother, like daughter……….   

The other cool thing that happened in our family is that all four kids Keith, Fran, Scott, Vanessa and myself all have Master’s degrees.  I’m so proud of all of them and love them to death.

 

We Can Never Lose HOPE……

March 22, 2022 by
Family

Happy New Dreams. New Days. New Desires. New Ways.

Happy New Year from the Marin Family to Yours.     

We all get the same amount of 365 Days. 

The only difference is what we do with them.

We Can Never Lose HOPE……

Author Therese Crutcher-Marin

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 and learn about HD:  https://theresecrutchermarin.com

 

December 29, 2021 by
Family

Peace on Earth, Goodwill To Men

       From The Marin Family To Yours………………….Merry Christmas!

   

We Can Never Lose HOPE……

Author Therese Crutcher-Marin

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 and learn about HD:  https://theresecrutchermarin.com

 

 

 

 

 

December 22, 2021 by
Family

Juvenile Huntington’s Disease

I call Huntington’s disease (HD) the cruelest disease on the planet.  Unfortunately, there is also Juvenile Huntington’s Disease (JHD) that is just as cruel.  Until 2017, I had never seen a child with JHD.  I was attending my first Huntington’s Disease Society of America (HDSA) Annual Convention in Schaumburg IL where I saw several children with the disease. Having a spouse with HD is hard enough, but to have a child with JHD, must be heartbreaking.

Research studies have estimated that about 5 percent to 10 percent of Huntington’s disease cases are classified as juvenile.   Watch the HDSA video:  Here’s the Deal with Parenting A Child With Juvenile Huntington’s Disease

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Juvenile Onset Huntington’s Disease (JHD) is a form of Huntington’s disease (HD) that affects children and teenagers. Huntington’s disease is a hereditary neurodegenerative disorder that is characterized by progressively worsening motor, cognitive, behavioral, and psychiatric symptoms. JHD is caused by a mutation of the huntingtin gene called a “CAG repeat expansion”. The mutation results in gradual neuronal degeneration in the basal ganglia of the brain, which is responsible for coordination of movements, thoughts, and emotions. As JHD progresses, other regions of the brain undergo neuronal degeneration with diffuse and severe brain atrophy that is comparable to late stage Alzheimer’s disease.

JHD Symptoms

Presentation of JHD includes changes in personality, coordination, behavior, speech or ability to learn. Physical changes include rigidity, leg stiffness, clumsiness, slowness of movement, tremors or myoclonus. In comparison with adult HD, seizures and rigidity are common, and chorea is uncommon.

Onset and Progression

JHD usually has a more rapid progression rate than adult onset HD; the earlier the onset, the faster JHD progresses. Death often occurs within 10 years of JHD onset, as opposed to 10-25 years in adult onset HD.

Her Mother’s Daughter is a powerful documentary of family, love and hope – across generations and against all odds.  To watch the film, click here.

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.

December 9, 2021 by
Family

Marcia Louise Marin A Huntington’s Disease Warrior

                                    HAPPY BIRTHDAY, MARCIA!

Woody Guthrie Festival 7-2017

Today, October 25th, Marcia Louise Marin would have celebrated her 73rd birthday.  John and I celebrate her life as we are the rememberers of the three(3) Marin sisters.

I acknowledge the positive impact Marcia had on my live as I witnessed her strength, kindness, generosity, gentility,  grace, her ability to forgive and accept people where they were at.  She was the most unassuming person I have met in my life.  John had a very special relationship with his sisters; they depended on each other because they had an absent father and a mother in Napa State Mental Hospital.

   

Marcia is the second Marin sister to be stolen from my family by the insidious Huntington’s disease (HD).  I call it the cruelest disease on the planet because Marcia was a young, successful professional at AT&T in San Francisco, had a bright future ahead of her when at age 32 became symptomatic.  She was able to work until age 36 by writing notes to herself at work and changing from high heel shoes to flats because her co-workers thought she was drunk.

It is with much sadness that my children, Keith and Vanessa, didn’t know this aunt before she became ill.  Marcia would have been a wonderful aunt and awesome role model.

We Can Never Lose Hope….

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is a memoir honoring my three (3) sisters-in-law.  100% of the proceeds is donated to the nonprofit, Huntington’s Disease Society of America.

 

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October 25, 2021 by
Family

Circle of Life

Author Therese Crutcher-Marin, HD Advocate

The Circle of Life has never been more present in my family’s life than it is at this time.

One definition of the Circle of Life  is “Nature’s way of taking and giving back life to earth. It symbolizes the universe being sacred and divine. It represents the infinite nature of energy, meaning if something dies it gives new life to another.”

My father and me in 2018

     

I have come to see my father’s end as a new beginning because as my 91-year old father left this world, two children were born into my family;  Marlena, our first grandchild, and a great grandson, Hayden, to my sister Ellen.
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 and learn about HD:  https://theresecrutchermarin.com
September 9, 2021 by
Family

Why Did I Start the HDSA San Francisco Bay Area Affiliate?

Many people have asked me why I started the Huntington’s Disease Society of America (HDSA) San Francisco Bay Area Affiliate , with the help of many Huntington’s Disease (HD) advocates, when I don’t live there?  Facebook Page

I believe the San Francisco Bay Area, with 7 million people, deserved to have a HDSA Chapter/Affiliate to support the local Huntington’s disease families.   

I also had another reason in mind.  Over the past three years, I’ve been bugging John to move to the San Francisco Bay Area to be closer to our children. I knew one day John would relent and he did last summer, when it was a brutally hot summer in Auburn CA.

Keith and Fran had their first child four months ago and will soon be in a home in Novato CA to grow their family.  Vanessa and Scott bought a home in Petaluma, north San Francisco, and love it there.

So, we sold our house in Auburn CA and are building a 1200 sq. ft. home on Vanessa and Scott’s property in Petaluma and are temporarily living in our cabin in Lake Tahoe while it is being built.

We Can Never Lose HOPE….

Author Therese Crutcher-Marin

I’m a HD, Chair for HDSA San Francisco Bay Area Affiliate, an author and a blogger.

 

Visit my website at:  https://theresecrutchermarin.com

 

 

 

 

June 15, 2021 by
Family, Mindful

Marlena Keeps Me Present and Mindful

John and I have been helping Keith and Fran, with our three and a half month old granddaughter, Marlena, since Fran went back to work and still works remotely.

Last week as I sat on the couch holding her, amazed at her progress in just three months, I reminded myself to stay present, relaxing in the beauty of the moment. I consciously did not let my mind wander, like it usually does, but kept my focus on Marlena.  As I focused my awareness on the present moment, my breathe slowed, my shoulders relaxed and I felt Marlena’s body relax against me.  I breathed in her baby smell, kissed her cheek and squeezed her a little tighter, acknowledging the many blessings I have presently right in front of me.   

One of the best tools to practice staying present is mindfulness.  Mindfulness is essentially an accepting, open, non-judgmental and curious focus on one’s emotional, cognitive and sensory experience in the present moment. Simply put, mindfulness is present moment self-awareness.

It takes some concentration and the rewards you reap are wonderful.

We Can Never Lose HOPE….

I’m a Huntington’s Disease(HD) Advocate, Chair for HDSA San Francisco Bay Area Affiliate, a blogger and author or Watching Their Dance. My Author/HD Advocate Website

Author Therese Crutcher-Marin

Please make a donation to the nonprofit, Huntington’s Disease Society of America.  You can help us in the fight to eradicate this horrific disease so no one has to suffer anymore.  Donate here.

  

June 8, 2021 by