Browsing Category

Hope

Hope, Thankful

John’s Test Result for Huntington’s Disease

Story continued from Therese’s blog on August 18th.   http://theresecrutchermarin.com/new-blog-page/

After living a life at risk for Huntington’s disease with John for 37 years, his gene status would  finally be known to us on December 8, 2016.  Dr. Vicki Wheelock at U.C. Davis Center of Excellence would give us the result. HOPE was more important to me now than it had even been.

It just happened that the six weeks we’d have to wait to find out John’s test result was during the holiday season; Christmas. This time of the year is busy and festive, which kept my mind occupied.  It was when I was lying in bed trying to go to sleep that my mind would not be still.  I’ve always had a feeling John didn’t inherit  the mutated gene, as did my mom and grandmother, but Huntington’s disease can show up later in life which meant our kids would be at risk.  Because late onset was a possibility, I was more worried about the kids than John because he was 61, retired and we had enough money and long term healthcare insurance to take care of him.  http://predictivetestingforhd.com/ 

On January 8th, 2016, John and I held hands as we waited in the patient room.  When Dr. Wheelock entered and sat down, my heart was beating so fast I felt dizzy.  I could tell John was nervous, squeezing my hand and taking deep breathes.  Mara, genetic counselor, was also in the room as Dr. Wheelock asked if we wanted to hear the result.  I looked at John, and he nodded.   http://hdsa.org/what-is-hd/#genetic  

The doctor told us it was negative.  My shoulders dropped and my hand covered my mouth.  I have not seen John cry more than two times during our life together, and this was the third time!  We are so grateful and blessed and now our children do not live under the shadow of HD.

We can never lose HOPE………….Therese

Therese is donating 100% of the proceeds from her book, Watching Their Dance: Three Sisters, a Genetic Disease and Watching the Dance Huntingtons DiseaseMarrying into a Family At Risk for Huntington’s, to Huntington’s disease organizations around the world. To purchase a book please see her author website:  http://www.theresecrutchermarin.com  

It’s also available on Amazon and many book websites.

 

 

 

 

 

 

Hope

Genetic Testing Process for Huntington’s Disease

Story continued from blog on August 15, 2017………………..

When John had made the appointment at UC Davis Center of Excellence, he was informed that the cost would be around $1,200.00 for two office visits, and the DNA blood test to determine his gene status. (Only certain labs in the U.S. perform the test).  Also, everything would be conducted anonymously; John became a number on a chart.  https://www.ucdmc.ucdavis.edu/huntingtons/contactus.html  

On December 8, 2015, John and I meet with Dr. Vicki Wheelock, Mara Sifry-Platt, a genetic counselor and a psychiatrist.  We spoke first with Mara and she asked if we could create a family history chart on John’s mothers side of the family.  I handed her one that I’d drawn because that year I had spent many hours conducting genealogy searches on the Cahoon family.  Then the psychiatrist asked John to share his story growing up with Huntington’s disease in his family. John spoke slowly, softly and took his time. After that, Dr. Wheelock examined him, evaluated his gait as he walked, gave him commands to perform, all the while I’m sitting there watching and taking deep breaths to calm my fear.  http://www.hdsa.org  

After the examinations, Mara said the results would be available in six weeks.  We stopped by the nurses station and made THE APPOINTMENT to receive John’s test results; January 8, 2016.  Then, John and I walked to the lab to have his blood drawn.   http://predictivetestingforhd.com/   

When we got to the car, we both were lost in our thoughts, feeling surreal and decided to do something fun and not go straight home to ponder over what we had just done.  So. we went to the movie, enjoyed popcorn and Dr. Pepper, our favorite snack and soda. (Story to be continued on blog August 20)

We can never lose HOPE……………..ThereseWatching the Dance Huntingtons Disease

Therese is donating 100% of the proceeds of her book to HDSA in the U.S. and when the book is bought in another country, she is donating the proceeds to a Huntington’s disease organization in that country. To purchase Watching Their Dance, please go to Therese’s author page  http://www.theresecrutchermarin.com  or Amazon.

 

Hope, Huntington's Disease

HDSA Team HOPE Walks

The Team Hope Walk program is HDSA’s signature grassroots fundraising campaign designed to provide hope and support for those touched by this devastating disease. All proceeds support HDSA’s mission to improve the lives of people affected by Huntington’s disease and their families. Since their inception in 2007, Team Hope Walks have occurred in over 100 different cities and have raised over $12 million for the cause. https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.eventGroup&eventGroupID=857D7BD6-C299-258B-BC953D67026BF9CA  

John and I are halfway through my book tour and on our way to Hilliard Ohio for a Team Hope Walk this Saturday, June 22.  https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1189  We will attend another Team Hope Walk in Ohio on August 5 in Dayton.  https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1221  We’re looking forward to visiting Ohio, a state we have never been to.

    

  Therese is donating 100% of the proceeds to her book to Huntington’s disease organizations around the world.  Please see her author website to purchase her nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.    http://www.theresecrutchermarin.com 

Hope, Watching Their Dance

A Review Every Author Dreams of Receiving

KIRKUS REVIEW

A debut memoir focuses on a family wrestling with the genetic legacy of Huntington’s disease.

Crutcher-Marin met her future husband in 1976 while they both attended junior college in California—it took no time for her to be captivated by him. Then, a few weeks before Thanksgiving, John’s three sisters called a meeting and revealed that while visiting an aunt they discovered the family was plagued by Huntington’s disease, a debilitating neurological disorder. John’s mother, Phyllis, and three of her siblings—four out of six overall—suffered from it. The odds that John would eventually come down with it were about 1 in 2, and there was neither a test to definitively diagnose it nor a cure to combat it. When the author met John he was 21 years old, and, generally, the symptoms start to appear between the ages of 30 and 45. Overwhelmed by the prospect that such uncertainty would forever haunt their lives, Crutcher-Marin reluctantly left John, a move encouraged by her own family. She even briefly dated someone else. But she couldn’t bear the separation and eventually returned to his embrace; they wed in 1980 and had a child. But the threat continued to loom over them like a storm cloud, and two of John’s siblings did eventually grapple with, and die from, the terrible affliction.

To read the full Kirkus Review see:      https://www.kirkusreviews.com/book-reviews/unknown/watching-their-dance/     

To purchase Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, please visit:      http://theresecrutchermarin.com/     

We can never lose HOPE…………………Therese

About Author, Hope

First Leg of Therese’s Book Tour

Last January John and I began discussing the possibility of a book tour but it didn’t go too far until Huntington’s Disease Society of America (HDSA) agreed to allow me to promote my book at their 3-day National Convention in Chicago in June. Now, we are less than a month of leaving, so we’re busy packing our new RV to visit states and places we have never been to before.

Leaving California for three months is somewhat daunting but we did it in 2010 in our 5th wheel. On that trip, we visited family and friends on our way to Virginia, where my older sister, Ellen, lives.  From Virginia we headed to  the Outer Banks in North Carolina, saw Kitty Hawk and then drove south through Georgia, Texas and on to San Diego to see our daughter Vanessa at C.S.U., San Diego before heading back to Northern California.

This trip will focus on attending events to heighten awareness of Huntington’s disease and I hope to sell many books, because the more books I sell, the more money I can donate to HDSA. We’ll also be exploring the beautiful places in each of the states we visit.

Here is what’s planned the first month of the trip:  Yippee!!!!

1st stop-Shawnee Kansas where my Aunt Trina, Aunt Nancy and cousins live.  On June 17, John, some of my relatives and myself will participate in the Lenexa Kansas HDSA Team HOPE Walk.  I will also promote my book.  If you live in the area, please sign up to support this worthy cause.  https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1083

June 19 & 20-LeClaire, Iowa. Visit the store of TV show American Pickers.  http://www.antiquearchaeology.com/locations.php We love the show!

 

June 22-Schaumburg, Illinois. HDSA National Convention. I will participate in HDSA Leadership Day representing Northern California Chapter Board of Directors.

June 23, 24, 25-Schaumburg, Illinois. HDSA National Convention.The HDSA Convention is the world’s largest Huntington’s disease family event bringing together the best of education, advocacy and research to create three days of family-focused learning for the Huntington’s disease community.  I hope to meet many of my Facebook friends and, of course, promote my book.  http://hdsa.org/about-hdsa/annual-convention/

Tour Chicago area and spend a few days in Michigan.

To purchase Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, please click here:  http://www.theresecrutchermarin.com   100% of the proceeds is being donated to HDSA to help in the fight against Huntington’s disease.

We can never lose HOPE…………Therese

 

 

Hope

Jennifer Simpson-HDSA Manager of Advocacy

We do live in a wonderful age of technology.  Today, with the help of Jennifer Simpson, HDSA advocate, we can make a difference and support initiatives from our computers and telephones. I have signed my name to many letters to my congressman and senator over the past few years that Jennifer developed and made easy to send through HDSA website to voice what the HD community needs from our government.

Thank you to Jennifer for your work in the recent updates to the Social Security Disability guidelines for Huntington’s disease.

The focus on The Huntington’s Disease Parity Act  (H.R. 842/S. 968) which will improve access to Medicare coverage for individuals with Huntington’s Disease (HD) continues.  What the legislation will do is, Waive the Medicare two year waiting period, thereby ensuring individuals receive critical health benefits and care in the early stages of the disease.

Jennifer is leading the fight, and has been for several years, against the two year wait to access Medicare.   Medicare’s two year waiting period is particularly devastating for people with HD.  Once a person with HD is finally deemed eligible for SSD benefits, they are forced to wait two years to receive Medicare benefits.  During the two year wait, HD’s destructive impact cognitively and physically robs the person of their ability to live independently. http://hdsa.org/about-hdsa/advocacy/huntingtons-disease-parity-act-2/

Please visit the above website regularly because “Call To Action engagements” become available that allows you to send letters and/or make phone calls to your Congressman or Senator to support the Parity Act.

Information on the bill H.R. 842   https://www.congress.gov/114/bills/hr842/BILLS-114hr842ih.pdf

Subscribe to Blog via Email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Enjoy your day!  Therese

 

 

Helping Others, Hope

We’re All in This Together

I want to thank those who set up support/informational Facebook (groups) pages i.e.  Huntington’s Support Group…..Huntington’s Disease Raising Awareness….Huntington’s Disease UK…..Huntington’s News……HD/JHD Caregivers……I’m an HD Warrior……Huntington’s Disease Assistance Funds.  Being given the platform to express oneself, and being heard validates our plight. When we are acknowledged by our fellowman, it renews our energy and our spirit.

These groups allow the HD community to connect on a very deep, personal level even though hundreds and thousands of miles separate us.  We are connected because of the similar lives we lead, the similar challenges we have, the similar emotions we feel, the similar fear, guilt and anxiety we live with everyday. 

More importantly, I feel it is the collective power of HOPE I see on these pages for a therapy/cure that keeps us going even in our darkest hours.  Even though HD has stolen our loved ones from us for generations, we are strong and continue to persevere. Over the past seven years, I have found solace and inspiration on the internet and Facebook to continue writing my book, Watching Their Dance: Three Sisters, A Genetic Disease and Marrying into a Family At Risk for Huntington’sThe powerful truth of the disease is what the world needs to hear because no one, but those who live it, truly know what it is like.

I believe the collaborative power we generate, I feel when I read posts, allows the millions of people to live bravely with HD and gives strength to those living “at risk” in the shadow of Huntington’s disease.

Subscribe to Blog via Email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Enjoy your day!  Therese

Hope, Huntington's Disease

Trey Gray-Dummer for Brooks & Dunn and Reba McEntire

I want to shout to the world my thanks to Trey Gray, another kind, giving individual who wrote a book jacket comment for Watching Their Dance: Three Sisters, A Genetic Disease and Marrying into a Family At Risk for Huntington’s  Trey is a famous, talented drummer for Brooks & Dunn and Reba McEntire. He is also a Huntington’s disease advocate, who tested positive in 2003,

Here is his comment that will appear on the cover of my book:  “Tears, laughter, blessings and hope….an amazing story that will touch, and help, I pray, everyone who reads it”.

Trey has also let the world into his private life, more than one time, by participating in a 2013 documentary:  http://aliveandwellthefilm.com/ .  ALIVE & WELL is a powerful documentary film about the human condition, which follows seven resilient people coming to terms with the profound reality of living with the hereditary chronic illness known as Huntington’s Disease (HD). Subjects in the film range from a young woman hoping to start a family, to a mother taking care of her symptomatic 6 year-old son and ailing husband; the drummer of a major country music band, a former NBC News journalist turned HD-advocate, as well as a renowned scientist relentlessly searching for a cure. Far from giving us a hopeless glimpse into life with terminal illness, ALIVE & WELL reminds us all of our ability to persevere with strength, despite life’s most difficult challenges.

More information on Trey:  http://theboot.com/trey-gray-alive-and-well/

Subscribe to Blog via Email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Enjoy your day!  Therese

Hope, Love, The Marin Siblings

Remembering the Marin Sisters at the SF Writer’s Conference

As John and I drove home Sunday evening after I attended the SF Writer’s Conference, my thoughts were on Lora, Marcia and Cindy, my sisters-in-law who were stolen from us by Huntington’s disease.  The motivation I’ve had for writing and publishing the book, Watching Their Dance: Three Sisters, A Genetic Disease and Marrying into a Family At Risk for Huntington’s was fueled by them, my friends and the love John has for his sisters.

Since these three lovely ladies were so closely entwined in our lives, their experience with HD was essential to the story of how I survived for 38 years living in a family at risk for the worst disease on the planet.  As the launch date for my book grows near, my heart is filled with excitement and joy knowing these three amazing women will live in the pages of my book forever.

I HOPE thousands of folks will enjoy my book, which in turn will generate substantial revenue to help fight HD along with heightening awareness of the insidiousness of the disease.

Loralee Marin

Marcia Louise Marin

Cynthia Ann Marin

Subscribe to Blog via Email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Enjoy your day!  Therese

Hope

Hope

13100881_10153587546096824_1366488115636636166_nThe word inspirational is defined as making you feel full of hope or encouraged.

I describe my book, Watching Their Dance as an inspirational story because the tale emits hope, a feeling that what is wanted can be had or that events will turn out for the best. Through the years, I clung to hope because it calmed the fear I lived with every day.

imgresAs we move into a new year, I have hope for many things; hope for a cure for Huntington’s disease, hope for president elect Trump to make the best decisions to strengthen our country, hope for solutions for the homeless, hope for kindness to become more prevalent in our society, hope our world can be void of war and full of love for our fellow man…………….

John and I wish you and your family a Happy and Hopeful New Year.

 

Photo credit: Foter.com / CC0