Browsing Tag

#huntingtonsdisease

HD Awareness

“Chicago Med” and Huntington’s Disease

I have watched many TV MEDICAL SHOWS through the years & every so often, Huntington’s disease (HD) shows up in the script. On October 24, 2018, the “CHICAGO MED” episode featured a Huntington’s Disease patient brought into the ER.  https://www.nbc.com/chicago-med

Here’s a little info about the episode and the dilemma the doctors are challenged with concerning the HD patient.  What-is-HD?

“Protocol, as it turned out, was a major thorn in the side for Ava and Dr. Charles tonight, as well. They did their best to help a man who had Huntington’s Disease and refused to tell his son about it. He would rather die, but the problem there is that his son wouldn’t really know the truth about it. Thanks to Dr. Charles, though, there may be a way in order to help the son out for his future.”

I was thrilled to see Huntington’s disease on a popular TV show because it heightens awareness.  I wish they would have explained the disease in more detail, but I hate to complain since it was on prime time.  Hopefully, folks watching better understand the challenges of the disease.

Thank you NBC!  You can watch the episode on HULU if you have it.

We Can Never Lose HOPE….

         

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is available on Therese’s author website http://www.theresecrutchermarin.com and many book websites like Amazon

Family

Genetic Information Non-Discrimination Act-GINA

In 1988, when two of my sisters-in-law, Lora and Marcia Marin were struggling with Huntington’s disease (HD), I became obsessed with increasing John’s Life insurance.  He was employed by Placer County and as a manager he received a free $50,000.00 life insurance policy. What is HD

To protect my family and to lower my anxiety, I felt $50,000.00 was inadequate, because of John’s at risk status for HD, and set my sights on securing a private life insurance policy for John.

Well, I wish GINA had been established at that time because I applied to ten (10) Life Insurance companies and John was denied by all of them.  The Genetic Information Non-Discrimination Act (GINA) created new protections against the misuse of genetic information by health insurance companies and employers.  Go here for FAQ’s about GINA.  what-is-gina-and-when-does-it-take-effect

I remember the question that was on the applications that was the cause the denial:  “If a parent is deceased, what was the cause of their death?”  I wrote, “Huntington’s disease”.

We Can Never Lose HOPE……..

             

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is available on Therese’s author website http://www.theresecrutchermarin.com and many book websites like Amazon

 

Family

The Birth of Christ and Advent

My mother holding me during my first Christmas

Me with older sister, Ellen

In the 1960’s, when my three sisters and I were growing up in Shawnee Mission, Kansas, my parents, Jim and Rita always made Christmas special for their children.  Since we were a Catholic family, the focus was on the birth of Christ. Every year, my mother brought out the Advent Wreath that held three purple candles and one pink, designating the four weeks before Christmas.  Before dinner, we said our prayer and then lit the appropriate candle(s). The themes of Advent are hope, peace, joy and love.

I have fond memories of Christmas Eve; dinner and presents at my Grandparents home, midnight Mass and a life size Nativity scene in the hall outside St. Pius Church entrance.

May your holiday be filled with hope, happiness, love and family memories, new and old. 

                              Merry Christmas 

We Can Never Lose Hope…..

Therese-Author

Bray Vineyards in Plymouth California

John and my good friend Oliver Bray, who John has known since grade school, built Bray Vineyards from the ground up.  Ollie lives in Martinez, where they grew up, and is a successful attorney like his father, Frank Bray.  https://www.brayattorneys.com/attorney-bios

In 1996 Oliver Bray and Robin Bray established Bray Vineyards on 50 acres of prime Shenandoah Valley vine land. They have created a lovely, peaceful place, with great wine. Address: 10590 Shenandoah Rd, Plymouth, CA 95669, USA.  https://www.brayvineyards.com/ 

Ollie, John and John’s three sisters, Lora, Marcia and Cindy went to Alhambra High School together and were all good friends.  Ollie was a sponsor for the 2018 HDSA Sacramento Team Hope Walk last September. The three Marin sisters all died of complications from Huntington’s disease. John is the only survivor of a family devastated by Huntington’s disease. https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1486

California-Shenandoah Valley wineries    Take a day and visit the many wineries in the Shenandoah Valley and do some wine tasting.  You won’t be disappointed. The wineries are in Amador County off Highway 50 before you hit Placerville California. If you enjoy the wine, you might want to be in the Bray Wine Club like we are.  John and I look forward to our quarterly shipment of Bray wine.

We Can Never Lose Hope…………..

Caregiving, Taking Care of Yourself

Caregivers-Be Kind to Yourself-Part 2

This blog is continued from December 4th blog on CAREGIVING

6. Don’t ignore your emotions

Pay attention to your own feelings and emotions, and seek counseling if needed. Vent feelings to trusted family members or friends.

7. Take time for yourself

Use relaxation or stress management methods such as meditation, visualization and yoga. Books and videos are available to guide you in these techniques.

8. Read, pray or meditate for at least 15 minutes a day         

My 102 yr. old Grandmother Chris Crutcher. My Aunt Trina & 2 cousins looked after her.

Consume daily prayer books and helpful magazines like Today’s Caregiver and Caring Today, or books such as Chicken Soup for the Caregiver’s Soul to uplift your spirits. If you’re religious, seek the counsel of a spiritual leader you trust and respect.

9. Chuckle more often

Laugh, reminisce and share stories of happy times.

10. Ask for help

Friends, family and religious groups may be eager to assist and are only waiting to be asked and directed. Doing everything yourself deprives others of an opportunity to serve.

Articles on being a caregiver:

mayoclinic.org/healthy-lifestyle/stress-management/in-depth/caregiver-stress

UCDavis Caregiver & Community Resources 

We Can Never Lose HOPE……

100% of the profits are being donated to the nonprofit, Huntington’s Disease Society of America, HDSA.  

The book is available on Therese’s author website http://www.theresecrutchermarin.com & many book websites like Amazon

 

HDSA Northern California Chapter

Help for Today…..Hope for Tomorrow

The Huntington’s Disease Society of America (HDSA) slogan resonates in my soul and I feel privileged to be associated and work with the awesome people on HDSA Northern California Chapter Board of Directors.  They share the same passion as mine; we are dedicated to improving (help) the lives of everyone affected by Huntington’s disease (HD).

There are many other wonderful Huntington’s disease organizations helping families around the world.  Here are a few:

http://www.hdsa.org  

Help4HDInternational

http://www.huntingtonsdiseasefoundation.org/

https://www.wehaveaface.org/

https://www.hda.org.uk/  

HOPE was so important to John and my survival as we watched his three sisters struggle with HD.  I always felt Hope was more than optimism; more than positivity.  I love this definition of HOPE by Dr. Andrew uses from the book The Anatomy of Hope:

Hope is one of our central emotions, but we are often at a loss when asked to define it. Many of us confuse hope with optimism, a prevailing attitude that things will turn out for the best. But hope differs from optimism. Hope does not arise from being told to think positively, or from hearing an overly rosy forecast. Hope, unlike optimism, is rooted in unalloyed reality. Although there is no uniform definition of hope, I found one that seemed to capture what my patients had taught me. Hope is the elevating feeling we experience when we see—in the mind’s eye—a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion.

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 I donated $9,015.00 to HDSA in December which was the profit from books sold in the U.S. since I published in April 2017.

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Watching the Dance Huntingtons Disease
Therese-Author

Free Gift With Purchase of Book “Watching Their Dance:”

When you purchase my book, Watching Their Dance, on my AUTHOR WEBSITE, www.theresecrutchermarin.com I will send you a dozen “Help Fight HD!/HDSA.ORG” wristbands.

For every book sold, in the U.S., I donate $7.00 to Huntington’s Disease Society of America (HDSA).   http://www.hdsa.org 

          

For those outside the U.S., the book is available on Amazon around the world.

Canada:   https://www.amazon.ca/   United Kingdom:  https://www.amazon.co.uk/

France:  https://www.amazon.fr/   Italy:    https://www.amazon.it/

Germany/Netherlands https://www.amazon.de/   Spain https://www.amazon.es/

Mexico:   https://www.amazon.com.mx/   Japan:    https://www.amazon.co.jp/  

We Can Never Lose HOPE………….

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s “A poignant remembrance of a love forged in crisis”. Kirkus Review   https://www.kirkusreviews.com/  

You can also find the book on Amazon.com   https://www.amazon.com/-/e/B06ZY85776  

 

 

 

 

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.

 

 

 

 

 

Helping Others

Sacramento Huntington’s Disease (HD) Support Group

People have asked me why I attend the monthly HD support group in Sacramento when I currently do not have anyone affected by the disease?  Yes, my three sisters-in-law are gone, stolen from us by the insidious HD, but they are not forgotten.

I take part in the meetings in honor of Lora, Marcia and Cindy’s struggle with HD.  For over 25 years, John and I lovingly cared for and helped his three sisters through the disease process, without a support system, as neither a support group nor HDSA Center of Excellence existed in the late 1980’s and 1990’s in the Sacramento area.

Being present for those struggling with HD, listening, acknowledging their experience, pain, fears and doubts, and offering advice, gives me peace.  I will always have compassion in my heart for HD families, and have a need to help in some small way, because I know what they are going through.  If I could have talked with a HD family that was going through what John and I were experiencing, it would have been life changing for me.

If you’re considering joining a support group, this article might be beneficial to you:      http://davidsusman.com/2015/04/23/9-benefits-of-support-groups/  

Click on link for a larger picture of the list of support groups in Northern California:   https://www.ucdmc.ucdavis.edu/huntingtons/files/support_groups.pdf  

HDSA also offers free ONLINE SUPPORT GROUP MEETINGS.  To register please go to:   http://hdsa.org/osg/

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.

100% of the proceeds from books sold in the U.S. are being donated to HDSA.  John and Therese donated $9,015.00 last December which was the profits from books sold 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.