Watching Their Dance

Updating Nonfiction Book- Watching Their Dance

A while back, my editor, Pam Feinsilber, suggested I update the front cover of my nonfiction book, Watching Their Dance, and highlight the review that Kirkus Reviews gave to the book.  So, I did.

The words I highlighted, that appear at the top of the front cover are:

This is a rare treat—a true story that is as uplifting as it is heartbreaking.  A poignant remembrance of a love forged in crisis.” —Kirkus Reviews

To read the full Kirkus Reviews on my nonfiction book, visit:  https://www.kirkusreviews.com/book-reviews/unknown/watching-their-dance/

Kirkus Reviews is an American book review magazine founded in 1933 by Virginia Kirkus. The magazine is headquartered in New York City.  Every author wants a good review from this magazine.  

Author Therese Crutcher-Marin

To visit my author website, click on link: https://www.theresecrutchermarin.com

We Can Never Lose HOPE……….

 

 

Therese-Author

Happy Thanksgiving to You and Your Family

         My family wishes you peace, love and harmony

                      on this Thanksgiving Day 2019.

Thanksgiving is a holiday that’s all about gratitude — after all, “thanks” is                                                    right there in the name.

From John, Therese, Keith, Vanessa, Fran and Scott in Northern California!

We Can Never Lose HOPE………………….

Therese-Author

Hang On To A Dream…………….

What is life without dreams?  Or, another way to put it, what are the goals you wish to achieve in your life because you need to set goals in order turn your dreams into reality.

I would venture to say, most people have dreams (goals); whether it be a dream of owning a certain car, a dream vacation, dream home, dream of a spending your life with someone you love, etc.

Article on Differences between goals and dreams

Growing up in Kansas, my dreams were not grandiose; they were pretty simple dreams that I thought would make me happy, i.e. falling in love and sharing my life with my soulmate, going to college, having children and serving my fellowman.

HDSA 2019 Convention

After discovering Huntington’s disease could steal the people I loved, I dreamed of “A World Free of Huntington’s Disease“. I have hung on to that dream for 41 years and will never let go of it and will work towards it until I die.

This is also the Huntington’s Disease Society of America (HDSA) Vision Statement.  hdsa.org/about-hdsa/  

We Can Never Lose HOPE….

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to the disease.  As of January 1, 2020, a dream of mine will come to fruition.  A new, official HDSA San Francisco Bay Area Affiliate will begin operating and Amy Fedele is the Co-Chair and I’m the Chair.  The Stanford and UCSF Centers of Excellence Teams are involved and it is our hope to increase our presence in the San Francisco Bay Area that has a population of 7.1 million.

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

You can read about my HD journey and the book I published, Watching Their Dance.  100% of the profits are being donated to the nonprofit, HDSA.  

 

 

 

 

 

 

 

 

 

 

 

Grief, Love

Love and Loss

HDSA 2019 Convention

Most folks have opened their hearts to love whether it be love for parents, siblings, grandparents, children or a rich, deep love for another person; spouse/significant other.

When we love, we don’t think about the emotion of loss that will eventually occur when the person you love dies.  I think it’s human nature not to spend time thinking about that event.

You cannot feel the emotion of love without the emotion of loss/grief. I ask, is it worth it to love?  I believe it is.   Article: If you love you will grieve

When I married John I was scared since he had an unknown gene status for Huntington’s disease (HD), a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Alzheimers and Parkinson’s.  The disease strikes young and when a parent has HD, each child has a 50/50 chance of inheriting the mutated huntingtin gene which causes the disease. what-is-hd/overview-of-huntingtons-disease/

I knew the possible consequences of my decision, but being young, I really didn’t know how this terrible disease stole everything from someone over a 10-20 year period of time. I soon learned, as my three (3) sisters-in-law succumbed to this horrific disease.  Watching these three (3) lovely ladies, I carried a loss in my heart for 24 years.  John didn’t want to be genetically tested so I realized I could also lose him this way.

Loving John wasn’t really a choice.  I fell in love with this man and my heart couldn’t give him up so I loved deeply knowing my life could change in a blink of an eye.

To read about our love story while living in the shadow of Huntington’s disease. please see my author website:  https://www.theresecrutchermarin.com

We Can Never Lose HOPE…….

I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to the disease.  Beginning January 1, 2020, there will be a HDSA San Francisco Bay Area Affiliate.  Amy Fedele is the Co-Chair, I’m the Chair.  The Stanford and UCSF Centers of Excellence Teams are involved and it is our hope to increase our presence in the SF Bay Area that has a population of 7.1 million.

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

You can read about my HD journey and the book I published, Watching Their Dance.  100% of the profits are being donated to the nonprofit, HDSA.  

 

 

 

 

 

 

 

 

 

 

Family, Huntington's Disease

More About Social Security and Huntington’s Disease

In a previous blog, I wrote about Social Security Disability Insurance and the difficulty Huntington’s disease (HD) families experience when applying for benefits and how for a HD family, who might have two (2) or more family members struggling with the disease, disability dollars are essential for their financial survival.  https://hdsa.org/find-help/healthcare-and-future-planning/disability-chat/

Applying for Social Security:  https://hdsa.org/find-help/healthcare-and-future-planning/disability-benefits-and-hd/disability-support/

I know a family in town where multiple members are struggling with HD; mom and three (3) adult children who have Juvenile Huntington’s disease.  The father/dad, a physician is still working, and is the caregiver for his loved ones at home.  To have disability benefits for these four loved ones is, no doubt, helpful.

Another family challenged by HD is the O’Donnell Family. A film by Rae Maxwell and produced by HDSA, Her Mother’s Daughter, introduces the world to Kathi O’Donnell and shows the devastating impact that Huntington’s disease (HD) & juvenile Huntington’s disease (JHD) has had on the O’Donnell family. The film is a window into Kathi’s inspiring journey as a caregiver as we see the different stages of HD & Juvenile Huntington’s disease – a rare form of HD that progresses more rapidly than adult onset.

To watch the film, click here. https://youtu.be/zXfDJ2aW4hw

We Can Never Lose HOPE……

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to the disease.  As of January 1, 2020, a HDSA San Francisco Bay Area Affiliate will begin operating.  Amy Fedele is the Co-Chair, I’m the Chair.  The Stanford and UCSF Centers of Excellence Teams are involved and it is our hope to increase our presence in the SF Bay Area that has a population of 7.1 million.

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

You can read about my HD journey and the book I published, Watching Their Dance.  100% of the profits are being donated to the nonprofit, HDSA.  

 

 

 

Caregiving, Hospice

November Is Hospice Month

Every November for the last ten (10) years of my healthcare career, was focused on promoting Hospice Care in Sutter Auburn Faith Hospice service area.  What is Hospice?

Since I became a volunteer for the nonprofit, Huntington’s Disease Society of America (HDSA), I’m pleased Hospice care is talked about more openly to Huntington’s disease families.  Hospice care supports the patient and the family.

We live in a society that doesn’t like to discuss death, so I like to post information that can help families when confronted with a terminal disease diagnosis.  It’s good to know that Medicare & Medicaid have a hospice benefit.  Most private insurance have one also.  The Outreach Committee that I managed took advantage each November to promote hospice care, educate the community and visit doctors offices.  Patients can be admitted to hospice with a referral from a doctor who believes the patient has six months or less to live. Article:  When-is-it-time-to-contact-hospice

Article:  huntingtons patients would benefit from more hospice involvement researchers argue

To watch a video on Hospice Care, visit: https://youtu.be/sYG5VqRvPiU

Therese at the 2018 HDSA Annual Convention in LA.

I’m a Huntington’s disease advocate and a hospice advocate.  My two (2) sisters-in-law, Marcia and Cindy, who had Huntington’s disease, were on my hospice program and died peacefully with no pain.

You can read about my journey with Huntington’s disease and my hospice work on my author website: https://www.theresecrutchermarin.com

We Can Never Lose HOPE…….

Huntington's Disease

A Risk Worth Taking

Most people do not ponder over the term “at risk” and how these two words can shape your life; either in a good way or a bad way, depending on how you look at it.  “Life is a series of calculated risks – nothing more. Everything that you decide to do has a margin of risk.” 

John and his three (3) sisters discovered, quite suddenly, that their mother had Huntington’s disease, and were “at risk“, each having a 50/50 chance of inheriting the cruelest disease on the planet. Huntington’s disease (HD) is a rare, fatal, brain disorder that has all the symptoms of ALS, Alzheimers and Parkinson’s at the same time.  And, there is NO CURE.  What is HD

At the time, there was no genetic test for the disease, so in my mind, at risk” would be forever. To me, it meant I would live with an unknown factor in my life that could not be controlled.  I’m a planner with no spontaneity in my body. My comfort level is having control of a situation so I’m prepared, and never surprised.

So, with that said, I was unsure about living a life at risk” with the man I loved.  What would you have done if you were in my situation?

Through life experiences, I came to realize that risks are almost always necessary ingredients in the recipe that is happiness.

_________________________________________________________________________

I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to this horrific disease.  A group of HD advocates and myself have formed a team to become a HDSA San Francisco Bay Area “Affiliate” to serve the HD community where 7.1 million people live. 

My book, Watching Their Dance” is available on many book websites and $7.00 is donated to HDSA every time the book is purchased.  https://www.amazon.com/-/e/B06ZY85776

We Can Never Lose HOPE….

HD Clinical Trials, HD Research

Stanford University Hosts 1st Annual HD Patient Care & Research Symposium

On Saturday, November 2nd, Stanford University will host a Huntington’s Disease Symposium.

This event was created for patients with Huntington’s disease and their families or others who would like to learn more about the disease.  This symposium will highlight current research and experimental therapies, measures that improve health including nutrition, exercise, and physical therapy strategies to improve psychiatric and cognitive challenges in Huntington’s disease and ways to support the patient and families.

The symposium will highlight experts from Stanford Center of Excellence.

To watch a video on HDSA Centers of Excellence, visit:  HDSACentersofExcellence

When:  November 2, 2019  8:30 am–1 pm

Where:  Michael’s at Shoreline, 2940 North Shoreline Blvd.  Mountain View, CA

Register:  https://www.eventbrite.com/e/stanford-huntington-disease-patient-care-symposium-tickets-71682752041?aff=ebdssbdestsearch

To watch a short video on HDSA Centers of Excellence, visit https://youtu.be/A3dGvRsnUS8


The HDSA Centers of Excellence provide an elite team approach to Huntington’s disease care and research. Patients benefit from expert neurologists, psychiatrists, social workers, therapists, counselors and other professionals who have extensive experience working with families affected by HD and who work collaboratively to help families plan the best HD care program throughout the course of the disease. Applications to become an HDSA Center of Excellence are open to all clinics in the United States who share HDSA’s commitment to high-quality, comprehensive care and access to clinical research.https://hdsa.org/find-help/clinical-care-services/hdsa-centers-of-excellence/

Author Therese Crutcher-Marin

We Can Never Lose HOPE………

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

 

Fundraising

Halloween & Hounds 4 Huntington’s Event

                     

                                             It’s Halloween Time!

This Saturday, October 26th, bring the family and your pooch dressed up in Halloween Costumes and participate in the

   Hounds 4 Huntington’s Dog Costume Walk 

Where:  Shollenberger Park in Petaluma. See link for directions cityofpetalumashollenberger

Time:  The Walk starts at 9 a.m. along the beautiful 2-mile loop that walks out by the Petaluma River.  (It is wheelchair accessible)

Why:  To help in the fight against Huntington’s disease; a rare, genetic brain disorder with NO CURE.

Dress your pooch(s) in costume and enter them in contests for best dog costume, biggest dog, smallest dog!

We have great raffle prizes for kids and wine prizes for adults.

Registration:  Walk Up Registration $25 for 1st dog & $10 for each additional dog.

Or register online:  https://app.donorview.com/QV7R

   

 

HDSA

Chat About Disability with HDSA

Getting approved for Social Security Disability Insurance is a long frustrating process when one has been diagnosed with Huntington’s disease (HD) and can no longer work.  HD is a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Parkinson’s and Alzheimer at the same time.  There is NO CURE.

I was very happy to learn the nonprofit, Huntington’s Disease Society of America (HDSA), hired a specialist to help HD families with the application and procedure to receive disability benefits. http://www.hdsa.org

HDSA offers a Disability Chat program which is designed to provide information, resources and support to both persons affected by HD and their caregivers who are either starting the disability process or have already filed but been denied benefits by the Social Security Administration as well as HDSA social workers who are assisting HD families with their disability applications in their region.

Each month, Disability Chat will feature a topic of interest for either HD families or HD social workers. Each segment will include a 45-minute presentation followed by 15 minutes for discussion with the audience.

Click on link to learn more, next date and how to sign up.  https://hdsa.org/find-help/healthcare-and-future-planning/disability-chat/

https://hdsa.org/find-help/healthcare-and-future-planning/disability-benefits-and-hd/disability-support/

We Can Never Lose HOPE….

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to the disease.  We just announced that as of January 1, 2020, we will be a HDSA San Francisco Bay Area Affiliate.  Amy Fedele is the Co-Chair, I’m the Chair.  The Stanford and UCSF Centers of Excellence Teams are involved and it is our hope to increase our presence in the SF Bay Area that has a population of 7.1 million.

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

You can read about my HD journey and the book I published, Watching Their Dance.  100% of the profits are being donated to the nonprofit, HDSA.