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Hope

Hope

HOPE-A Powerful Emotion

When I decided to marry John, even with his unknown gene status for Huntington’s disease (HD), the cruelest disease on the planet with NO CURE, instead of worrying every minute of every day, I chose to cling to HOPE.  what is HD?

HOPE is a powerful emotion that gave me strength, so at night when I went to bed, I wrapped my arms around John and HOPE.  Both gave me the strength I needed and I lived with HOPE in my heart for 38 years. (I still have HOPE that one day there will be a cure for Huntington’s disease.)

HOPE also calmed my FEAR, another powerful emotion, that can consume your thoughts.  

When the world says, ‘Give up’ HOPE whispers,

                      ‘Try it one more time.’

In every book I sell, I write:

We Can Never Lose HOPE………………….

An inspirational love story while living in the shadow of Huntington’s disease.

The theme’s in the book are HOPE, UNCONDITIONAL LOVE and FORGIVENESS.

You can find the book on many book websites like Amazon www.amazon.com/Watching-Their-Dance-

Hope, Huntington's Disease

Great Time to Get Involved

Today is the last day of May; HD Awareness Month. With the publicity generated this month by HD organizations and community members, hopefully, we have heightened awareness of this horrific disease that devastates HD family for generations.  

I wish to thank Dr. Carroll, a gene positive HD advocate and a devoted, brilliant HD researcher, who has done so much for Huntington’s disease.  Jeff says it a great time to become involved in HD research!  

Dr Jeff Carroll, PhD — Boston, USA  https://westerntoday.wwu.edu/features/psychology-s-jeff-carroll-awarded-new-100k-grant-to-research-huntington-s-disease  

 Article, Slightly long CAG repeats are more common than we thought.

For more information about Huntington’s disease please visit  http://www.HDSA.org  & join the fight! To for more information about HD Clinical Trials please visit  http://www.HDTrialFinder.org 

#LetsTalkAboutHD    #HDSAFamily

Hope

Hallelujah! Huntington’s Breakthrough May Stop Disease

Experts say it could be the biggest breakthrough in neurodegenerative diseases for 50 years.

To read the full article go to:     http://www.bbc.com/news/health-42308341?S 

Here are other articles that appeared in the news on December 11th, a day the Huntington’s Disease community rejoiced.

 http://www.hdfoundation.org/research-news/ 

 http://www.cnn.com/2017/12/11/health/huntingtons-disease-drug-trial-study/index.html 

 Statement by Louise Vetta-HDSA President 

 https://www.theguardian.com/science/2017/dec/11/excitement-as-huntingtons-drug-shown-to-slow-progress-of-devastating-disease?CMP=share_btn_fb 

 https://futurism.com/new-gene-therapy-regenerate-brain-tissue-fix-neurological-diseases/ 

 https://en.hdbuzz.net/249

This is the best Christmas present the Huntington’s disease community around the world could receive!  

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.  

Enter your email address to subscribe to Therese’s blog and receive notifications of new posts by email and receive the first chapter of my book, Watching Their Dance, via email.

 

 

 

 

 

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

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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.

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Enjoy your day!  Therese