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crutcht

Kindness, Love

The Hero’s In My Life

Like many people, I have several hero’s that I hold in high regard.  Most of them, for me anyway, are women who have inspired me, taken chances and usually succeeded, stepped outside their comfort zone to achieve their goal(s). 

#1. Elisabeth Kubler-Ross-A Swiss-American psychiatrist, a pioneer in near-death studies and the author of the groundbreaking book On Death and Dying (1969), where she first discussed her theory of the five stages of grief, also known as the “Kübler-Ross model”.   https://en.wikipedia.org/wiki/Elisabeth_K%C3%BCbler-Ross 

Since I worked in hospice for 10 years, I’m grateful to her for starting the conversation on dying and how hospice can assist the dying to have the highest quality to their life until they pass.  She created the first hospice house in England, and the hospice idea moved to the U.S. in the 1960’s.

#2.  Mother Teresa-Known in the Catholic Church as Saint Teresa of Calcutta, was an Albanian-Indian Roman Catholic nun and missionary. This woman emits unselfishness, kindness, love and hope.   https://en.wikipedia.org/wiki/Mother_Teresa  

#3.  Lora, Marcia and Cindy, are my hero’s not just because they had Huntington’s disease; it was their attitude towards life, and how precious it was to them despite their circumstance.  Also, they were the kindest, most generous, positive women I’ve ever met.   What is Huntington’s disease 

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 HD organizations around the world.

We Can Never Lose Hope………………..

 

Kindness, Love

The Wind Beneath My Wings

One of my favorite songs is The Wind Beneath My Wings by Bette Midler; from the movie Beaches. The song depicts the relationship between two woman, Bette Midler and Barbara Hersey, and their undying friendship, love and devotion despite their differences. I love Bette Midler as an actress and singer.  https://en.wikipedia.org/wiki/Beaches_(film) 

Whenever I hear it on the radio, I think of my husband, John Anthony Marin, my rock, my ever positive influencer in my life, the most resilient person I know, who kept me from shrinking into the depth of despair as each sister-in-law left this world because of Huntington’s disease.   http://www.hdsa.org 

John was the wind that supported me as we traveled through turbulent times in our life; he is still my biggest supporter and I would fall to the earth without him.  We now travel together into a smooth, calm breeze of peace and tranquility. 

So I ask you.  Who is the wind beneath your wings?  

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 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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About Author, HD Awareness

Writing for a HD Cure

People write books for many reasons.  In my instance, I wrote Watching Their Dance with several goals in mind. when book sales benefit a cause

Recognizing the goals or reasons for writing a story, I believe, will assist a writer with marketing their book, because it helps  identify their audience.

My goals/reasons for writing, Watching Their Dance:

  1. Create a tool to heighten awareness of Huntington’s disease
  2. Communicate the truth of what HD families go through for generations when HD is in their family
  3. Give the Huntington’s disease community around the world a way to generate money for their HD organization, i.e. HDSA, Huntington’s Society of Canada, Huntington’s Disease Association, etc., by purchasing a copy and telling others about it
  4. Donate the profit from book sales to Huntington’s Disease Society of America (HDSA)
  5. Contribute to the fight against HD monetarily that brings us closer to a cure or therapy  
  6. On a personal level, I wanted to heal from the loss of my 3 sisters-in-law, who had HD, and writing the story was therapeutic
  7. Honor Lora, Marcia and Cindy, and create a legacy
  8. Ultimately, I wanted to help find a cure for the cruelest disease on the planet

After setting my goals, the Huntington’s disease community around the world became one of my audiences. I have others that I will share in another blog.

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

 

 

Love

Loving Deeply

Forty years ago, I chose to be with John despite his unknown gene status for Huntington’s disease (HD). This may sound a little crazy, but living at risk for Huntington’s disease with John, for 38 years, and the precariousness of the situation, fortified my marriage.  I say this because when knowing my world could change over night, and steal what I loved most in this world, made me appreciate John everyday, never taking him or our relationship for granted. Living_at_risk_of_HD_  

And, I learned to love more deeply in the shadow of John’s mortality.

John and I rarely fought, we had some disagreements, but never got mad at each other.  Life is just too short not to forgive because we are all human and we all make mistakes.

The things I learned through this journey with Huntington’s disease looming over us, was to appreciate what I had in my life at that moment; I lived mindfully.  Also, John and I also didn’t put off the things we wanted to do and we able to create so many wonderful memories together with our children.  12 Indispensable Mindful Living Tools 

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 HD organizations around the world.

 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.

HDSA Northern California Chapter

Kaiser Permanente HD/Genetic Movement Disorder Clinic

HDSA Center of Excellence Partner Kaiser Permanente, Northern California 

Kaiser Permanente in Northern California has a team of people dedicated to providing excellent care for patients and their families who are dealing with genetic movement disorders. They strive to help people who are affected, as well as their family members, live as well as they can, with courage, dignity, and grace.   https://mydoctor.kaiserpermanente.org/ncal/specialty/genetics/specialty_clinics/huntington_disease.jsp 

Department of Genetics
1650 Response Road
Sacramento, CA 95815

Director: Suketu Khandhar, MD

Phone for appts: 916-614-4075

Clinic coordinator: Mara Sifry-Platt, MS, CGC
Phone: 916-474-2512
Email: mara.sifry-platt@kp.org

Social worker: Eleanor Tadina- Siau
Phone: 916-614-4869
Email: eleanor.x.tadina-siau@kp.org

Kaiser Permanente Genetic Movement Disorder Clinic flyer:

https://mydoctor.kaiserpermanente.org/ncal/Images/GEN_GMDclinic_tcm63-1192495.pdf

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

 

 

Helping Others

In Memory of Pamela Gusland

I write this blog in the memory of Pam Gusland, a local therapist I saw for many years who helped me through tough times when Marcia and Cindy struggled with Huntington’s disease and the stress of living with John’s unknown gene status for Huntington’s disease wore me down.  http://www.hdsa.org 

Last year, after my book was complete and I began selling it, I looked up Pam because I wanted to give her a copy since she had suggested many times over the years to write my feelings down because writing had a healing quality.  I wanted her to know I had taken her advice and through the creative process of writing and creating a book, I had healed. Thank you Pam for the support you gave me.

It had been eight years since I’d seen Pam, 2009, so I stopped by her office and found she was no longer there.  I began searching online and much to my disbelief, she had died of breast cancer in April 2017.

Her obituary in the local Auburn Journal newspaper pays a wonderful tribute to her:

After a long battle with metastatic breast cancer, Dr. Gusland died on April 5, 2017 at the age of 69. She spent her final days at her peaceful home in the Sierra Foothills. Dr. Gusland (Pam) was innately compassionate. She dedicated her life to a career of helping others. After several years of teaching special education, Pam transitioned into counseling with a Ph.D. in Clinical Psychology from The University of Denver. For over thirty years, she helped hundreds of individuals transform their lives through her private practice in Southern California and later in Northern California, where she served the Auburn community for the past twenty years.   http://www.legacy.com/obituaries/auburnjournal/obituary.aspx?n=pamela-faith-gusland&pid=186158505  

We Can Never Lose HOPE…………

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.

John & Therese donated $9,015.00 to Huntington’s Disease Society of America last December which was the profit from book sales since publishing in April 2017. 

 

 

 

Family

Ten Years Ago

Ten years ago this month, John and I lost the last two members of his immediate family.  His father, I called him Big John, passed away from bladder and colon cancer at age 86.  Cindy, my third sister-in-law would succumb four weeks later, to the monster I grew to despise, Huntington’s disease, at age 54. 

         

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.   http://www.hdsa.org  

It was a difficult time for us, to say the least, and the twenty-four years of anticipatory grief had taken its toll.  John and I had each other, that was so important, and we slowly regained our strength.  It was shortly these losses that I began searching for something good that could come out of my family’s tragedy.  I found it in my story.

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 HD organizations around the world.

 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.

 

 

 

 

HDSA

Scholarships to Attend HDSA National Convention June 2018

James and Mel Miller at the 2017 HDSA National Convention in Schaumburg IL.

National Convention Scholarship– This scholarship is open only to first time Convention attendees who are not California residents. (California residents please see separate scholarship application.) Applicants must be 18 years or older as of January 1, 2018. Open to residents of the United States only.
Click here to Download Printable Application 
Click here to fill and submit the application online

California Resident Convention Scholarship- The intent of this scholarship is to help families and individuals who live in the state of California to attend the 33rd Annual HDSA Convention. The scholarship is open to any family member or caregiver who is affected by Huntington’s disease.

Click here to Download Printable Application 
Click here to fill and submit the application online

Deadline to apply for scholarships is April 4th, 2018.

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

Survival

A Healing Journey

By 2008, John and I had experienced many losses that scarred our soul: my mother, John’s dad, Lora, Marcia and Cindy we’re gone.  We hated losing our parents but as One ages, it’s expected.  It was at this time, I began searching for a way to heal. My sorrow ran deep from these losses especially from watching three young women die a protracted death by the insidious Huntington’s disease.   http://www.hdsa.org

After many sessions with my therapist, I saw Pam for 12 years, writing therapy, a form of expressive therapy that uses the act of writing and processing the written word as therapy, appealed to me. Writing therapy posits that writing one’s feelings gradually eases feelings of emotional trauma.

Early in 2010, I composed an outline, I didn’t really know how or where to start, so I just began writing my story.  Not too long after that, I joined two writer’s club and shortly after thereafter, I joined a critique group.

I wrote and rewrote for four years, and the critique group proved to be invaluable.  A writer learns, as folks read your work, that you must be tough skinned and accept remarks as constructive criticism. I grew as a writer during this time, attending writing seminars and workshops.  In 2015, I found my editor, Pam, and spent a year rewriting again.

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 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.

 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.

Photo by robpurdie on Foter.com / CC BY-NC-SA

Grief

Anticipatory & Complicated Grief

On April 14, 2008, my third sister-in-law, Cynthia Ann Marin, died of complications from Huntington’s disease.  The main cause of death was cachexia, the general ill health and malnutrition, marked by weakness and emaciation, usually associated with severe disease.  She was fifty-four years old and had fought Huntington’s disease for 17 years.

 what-is-hd/         what-is-hd/#stages       what-is-hd/#scope

For 24 years, John and I had lived with anticipatory grief in our lives; watching each of John’s sisters slowly die from the disease (1984 to 2008). Anticipatory grief refers to a grief reaction that occurs before an impending loss. Typically, the impending loss is a death of someone close due to illness but it can also be experienced by dying individuals themselves. Article on anticipatory grief:   https://whatsyourgrief.com/anticipatory-grief/  

After so many losses in our lives, John and I became lost in complicated grief after Cindy’s death. Complicated grief is acute grief and can become a chronic a chronic, heightened state of mourning. Needless to say, I was looking for a way to begin to heal from my heartache. Article on: The difference between complicated grief and normal grief  

Stay well my friends.  My next blog will continue with the topic of grief and how I dealt with it through the birth of my book, Watching Their Dance.

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

 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.