Browsing Tag

#WatchingTheirDance

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………………..

 

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.

 

 

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.

 

 

 

 

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

Family, HDSA

2018 HDSA National Convention

I received this brochure in the mail from Huntington’s Disease Society of America (HDSA) the other day to register for this years National Convention in Los Angeles and I thought I’d share it.  (See below to print a copy)  I will be attending as a Board Member of the Northern California Chapter and I will also be selling my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.   http://hdsa.org/about-hdsa/annual-convention/ 

Highlights from 2017 Convention:  http://hdsa.org/about-hdsa/annual-convention/2017-2/

To print a copy of the brochure, click on these 2 links:

  http://theresecrutchermarin.com/wp-content/uploads/2018/02/Scan-2-1-e1518459511757.jpeg  

  http://theresecrutchermarin.com/wp-content/uploads/2018/02/Scan-3-1.jpeg  

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 books sold in the U.S. will be donated to HDSA.  John and Therese donated $9,015.00 in December which was the profit from books sold since Therese published 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.

 

 

 

 

 

Thankful

Genetic Testing for Huntington’s Disease

Genetic testing is a very personal choice and approximately 7-10% of folks at risk for Huntington’s Disease decide to be tested. 

Here is John and my journey to genetic testing:

In 1993, when the test became available for Huntington’s disease, I was thrilled to say the least.  I boldly asked John if he would take the test; I thought for sure he would want to know his gene status.  It was a selfish act on my part because I’m a control freak and wanted control of our lives, and knowing his status, I thought would allow us to better plan our future. When he said he wanted to continue living with the HOPE that he didn’t have the mutated gene, I understood. 

John did test in 2016 when Vanessa and Keith became engaged to be married.  John wanted to give his children a definitive answer so they could plan their lives. 

On January 8, 2016, John tested NEGATIVE for which we are so grateful.  

Article on:  Testing for Huntington Disease: Making An Informed Choice

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 and Therese donated $9,015.00 to Huntington’s Disease Society of America (HDSA) in December which 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.

 

Family, Love

A Message from Author Therese Crutcher-Marin

Many of you know I’m involved in the Huntington’s disease community and a board member on the HDSA Northern California Chapter.  Until I published my book, Watching Their Dance, I was unable to speak about John and my life at-risk for the cruelest disease because of the grief I carried in my soul.  Writing my story was a healing journey which allowed me to place the grief in a book and show the world what Huntington’s disease families go through for generations.    http://www.hdsa.org    

The following are reasons why I wrote the book and outcomes since I published April 2017.

  1.  The book is a personal HD fundraiser/HD awareness project and 100% of the proceeds from books sold in the U.S. are being donated to Huntington’s Disease Society of America (HDSA) to help in the fight against this horrific disease that killed my mother-in-law and 3 sisters-in-law. By heightening awareness, I hope to increase donations from folks who have never donated to our cause.
  2.  It’s an inspirational love story, over 38 years, and how John and I lived in the shadow of Huntington’s disease.  Since April 2017, I’ve sold 1,500 books/ebooks and my goal is 5,000. My book can be found on my Author Website: www.theresecrutchermarin.com, Amazon, B&N and other book websites.  $7.00 is donated to HDSA each time the book is purchased.
  3.  John and I donated $9,015.00 to HDSA in December 2017 which was the profit from books sold since I published in April 2017. 

We Can Never Lose HOPE………………..  

Woody Guthrie Festival 7-2017

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.

 

HD Awareness

Hero’s/Advocates In the Huntington’s Disease Community

There are many Huntington’s disease hero’s/advocates among us, some celebrities, some like myself, every day folks living their lives as fully as possible.  The pictures I shared on my blog are some of these hero’s/advocates: Musician Kate Miner, Woody & Marjorie Guthrie, Pitcher Joe Smith, Journalist Charles Sabine, Scientist Nancy Wexler,  Hockey player Jake Dowell, Movie producer Chris Furbee, Dr. Ed Wild, Dr. Jeff Carroll, Coach Mark Helfrich, Health & Fitness Guru Shana Verstegen, Blogger Dawn Quyle Landau and Drummer Trey Grey. (I’m sure there are others that belong on the list)

First and foremost, my sisters-in-law, Lora, Marcia and Cindy are my hero’s; caring for them was a privilege and an honor to walk beside them as they struggled with HD. 

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  

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

Martha Lehman-2018 HDSA Northern California Chapter President

On January 13, 2018, the HDSA Northern California Chapter Board of Directors kicked off their first 2018 planning meeting with a new president and several new board members.  Martha Lehman, retired social worker supervisor II CPS at Yolo County, who has been involved in the board for over 20 years, is the new president.

The board also welcomed four new members; Heidi Ramos, Amy Fedele-Lucchese, Ron Davis and Cole Holderman. Each individual brings an expertise that will assist the board in reaching their goals.  

               

Northern California Chapter (NorCal) is planning many events for the local Huntington’s disease community that will full fill HDSA’s mission statement: Improving the Lives of Everyone Affected by Huntington’s Disease and vision statement: A World Free of Huntington’s Disease.

Please visit Huntington’s Disease Society of America  Northern California Facebook page and web page on HDSA website to see dates of upcoming events.    https://www.facebook.com/hdsanocal/     http://northernca.hdsa.org/    and sign up to receive email notices.    http://northernca.hdsa.org/about/join-our-email-list   

Some of the Chapters upcoming events are: local convention, San Francisco & Sacramento Team HOPE Walks, Kaiser/UC Davis Education Days, Conquering HD One Sip at a Time, and HOPE dinner fundraisers.

I have been on the HDSA NorCal Board for one year and is slated to be president in 2019. HDSA currently has 54 volunteer led Chapters and Affiliates across the United States with its headquarters in New York City. Watching the Dance Huntingtons 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 Huntington’s Disease Society of America. Proceeds from books sold in other countries, will be donated to a Huntington’s Disease organization in the country where to book was purchased.

 We Can Never Lose HOPE…………………Therese