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.

 

Family

Genetic Testing for Huntington’s Disease

Our friends and family know John genetically tested but I have never shared why he decided to test for Huntington’s disease. Here’s the story.

In the fall of 2015, Keith was getting married and Vanessa had just become engaged for which John and I were thrilled. (Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain.  Every child of a parent with HD has a 50/50 chance of carrying the faulty gene)

One morning in late October of that year, I was standing in the kitchen making coffee when John came up to me, hugged me, and gave me the shock of my life.  “Your know Therese.  I want to give the kids a definitive answer about how Huntington’s will affect their lives, so I’m going to get tested”.  I remember just staring at him, speechless, because we hadn’t spoke about him getting tested since 1993 when the test became available.

After that discussion, we visited the kids in the SF Bay Area and John shared the news. Soon after that, John called the HDSA Center of Excellence at University of California Davis Medical Center  http://hdsa.org/hdsacoeucd/ and scheduled an appointment. (Story continued on blog on August 18).

Testing for Huntington Disease: Informed Choice:    https://depts.washington.edu/neurolog/images/neurogenetics/hungtinton.pdf

At the Mayo Clinic: http://www.mayoclinic.org/diseases-conditions/huntingtons-disease/diagnosis-treatment/diagnosis/dxc-20321460

We can never lose HOPE…………….Therese Watching the Dance Huntingtons Disease

Therese is donating 100% to Huntington’s disease organization around the world to help in the fight against the horrific Huntington’s disease.  Purchase it on her author website:  http://www.theresecrutchermarin.com   or on Amazon UK, GB, Germany, Netherland, Italy, France and Canada.

Huntington's Disease

James Patterson includes Huntington’s disease in his Book

Bruce Springsteen, my favorite artist, published his memoir Born to Run, in 2016. John knows I love memoirs so gave me the book for Christmas.  I didn’t start reading it until we started on my book tour in June.  It’s a big book, 510 pages, and Bruce shares every detail of his life along with his deep, intimate, emotions about everyone and everything.    http://www.rollingstone.com/music/features/bruce-springsteen-goes-deep-on-revelations-in-new-memoir-w443387  

I like to read two books at a time, so the other day we were at a flea market in Louisville Ohio and John picked up some books. When we got back to the RV, I looked through the pile and chose a Patterson book, Merry Christmas, Alex Cross.

I would bet most folks have read a James Patterson book; an author who created more enduring fictional characters than any other novelist writing today with his Alex Cross, Michael Bennett, Women’s Murder Club, Private, NYPD Red, Daniel X, Maximum Ride, and Middle School series.   http://www.jamespatterson.com/    

On the 33rd page of the book, about a 1/3 of the page down was this:  “Prior to the workplace lawsuit, he’d represented a California biotech company being sued by relatives of people who’d participated in a trial of a new Huntington’s disease drug and died shortly after treatment.”

You could have blown me over with a feather when I read it.  I got up and found John, showed him and we both looked at each and I said, “What are the chances of you picking up a book that has Huntington’s disease mentioned in it?”

I want to thank Mr. Patterson for including Huntington’s disease in his book because it creates awareness of the disease.  Maybe someone reading the book who knows nothing about the disease will look it up and make a donation to a Huntington’s disease organization somewhere in the world. That’s what I hope for anyway.   Watching the Dance Huntingtons Disease

We can never lose HOPE……………Therese 

To purchase Therese’s book, Watching Their Dance: Three Sisters, a Genetic Disease, and Marrying into a Family At Risk for Huntington’s, please go to her author website:   http://www.theresecrutchermarin.com 

HDSA

2018 HDSA National Convention in Los Angeles CA

If you haven’t been on HDSA.org lately,  http://www.hdsa.org   you can now watch sessions from the 2017 HDSA National Convention. I attended the convention for the first time and I was very impressed with the organization, presentation, sessions offered and the professionalism of the HDSA staff.  Next year, since it’s in LA, John and I will drive our RV to LA, attend the convention, and attend HDSA Team Hope Walks/Support Groups/Dinners in southern California at that time.

VIDEO RECORDINGS ARE NOW AVAILABLE from the 2017 HDSA National Convention. To watch select workshops clink here.  http://hdsa.org/about-hdsa/annual-convention/2017-2/ 

POWER POINT PRESENTATIONS OF THE TRACKS COMING SOON!

2018 HDSA National Convention is in LA California. 

Watching the Dance Huntingtons DiseaseTo purchase Therese’s book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, please go to:   http://www.theresecrutchermarin.com

We can never lose HOPE….Therese

 

HDSA Fundraising events

Sacramento Winemaker’s Dinner of HOPE

                                            August 14, 2017 at Rubino’s Ristorante, Rocklin CA 6-9 p.m.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

For more information and/or to make a reservation, please go to:  http://northernca.hdsa.org/userfiles/hdsa-sac-dinner-of-hope-2017-flyer-rev-4.pdf      

We can never lose HOPE ……………………Therese

Therese is donating 100% of the proceeds from her book to HDSA.  To purchase Watching Their Dance: Three Sisters, a Genetic Disease, and Marrying into a Family At Risk for Huntington’s please go to:   http://www.theresecrutchermarin.com   Watching the Dance Huntingtons Disease

HDSA Fundraising events

Upcoming Fundraisers for Huntington’s Disease

I’ve decided to post on my blog HDSA fundraisers across the U.S. twice a month because the Parkinson’s/Alzheimer’s disease organizations publish so many events.  The Huntington’s disease community has lots of events too!!!!!!!

HDSA TEAM HOPE WALK-Dayton OH 8/5/17

Team Hope Walks aim to raise as much money possible in the local community to support the mission and services of the Huntington’s Disease Society of America. https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1221

 John and I will attending the Dayton OHIO Hope Walk!

HDSA TEAM HOPE WALK-TRAVERSE CITY MI 8/12/2017

Walk is being held at Sunset Park.  https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1151

 My book is my own personal fundraiser that will continue for years.  In the U.S. I’m donating 100% of the proceeds from the book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s to HDSA (Huntington’s Disease Society of America).  See my author website to purchase it:  http://www.theresecrutchermarin.com 

We can never lose HOPE………….Therese

About Author, Fundraising

3rd Leg of Therese’s Book Tour

John and I are entering the last month of my book tour.  The time on the road, two months, has gone so fast; I don’t want it to end! Here’s what we have planned.

August 1-Akron Ohio. Attend a local HDSA Support Group to share the purpose of my book. A HDSA social worker facilities a support group for folks with HD and those living at risk.

August 5-Dayton Ohio. Participate in HDSA Team HOPE Walk and promote my book Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1221  

August 8-Sterling City Michigan.  Attend the HDSA Support Group meeting and share my book with attendees.    

August 12-Traverse City Michigan. Attend HDSA Team HOPE Walk and ask folks to use Watching Their Dance as a tool to heighten HD awareness.  https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1151 

August 19-Madison Wisconsin. HDSA Team Hope Walk to promote Watching Their Dance.      https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1152

August 27-Omaha Nebraska.   HDSA Team HOPE Walk.   https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1098

 

 

Enjoy our trip back home.   WooWoo!!!!!!

To purchase Therese’s book, please visit her Author Website:  http://www.theresecrutchermarin.com  100% of the proceeds from the book is being donated to Huntington’s disease organizations around the world.

We can never lose HOPE…………………Therese

Watching the Dance Huntingtons Disease
Fundraising

A Personal Fundraising Project Close to my Heart

I published the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntingtons on April 1, 2017, which is a personal fundraising project. It’s the driving force behind the promotion of my book.  

If you are interested in supporting a worthwhile cause, funding research to find a therapy or cure for the genetic Huntington’s disease, and is a good read, please purchase my book.  Kirkus Review said, “This is a story more about the power of hope than the wages of Huntington’s”.  If you are reader who enjoys a love story with passion, you’ll find it here.

I’m donating 100% of the proceeds to the non-profit, Huntington’s Disease Society of America http://www.hdsa.org  in the U.S., because this is how John, my husband, and I can help in the fight against the cruelest disease on the planet, Huntington’s disease (HD).  In the U.S., 30,000 people live with HD and 250,000 live at risk, like John and his three sisters.

Watching Their Dance can be found on many sites on the internet.  To purchase it, please go to  http://www.theresecrutchermarin.com 

or  https://www.amazon.com/Mrs.-Therese-Marie-Crutcher-Marin/e/B06ZY85776   

Huntington’s disease is a fatal, genetic disease that progressive destroys the nerve cells in the brain. It’s like having Alzheimers, ALS and Parkison’s disease at the same time.  http://www.mayoclinic.org/diseases-conditions/huntingtons-disease/home/ovc-20321431 

We can never lose HOPE………………………Therese

 

 

 

About Author

My Favorite Childhood Game

The other night as John and I were watching TV in our RV, I said to John, “I’m living my childhood dream by traveling across the Midwest”.  He looked at me funny and asked me to explain. I said, “When I was a kid, we played outside with the other kids in the neighborhood and our favorite thing to do was play TRAVEL.

My two sisters, Ellen, Julie and me, would run down the street, gather our friends and then we’d all run back to our house to play TRAVEL.  We’d pack our red wagon with old pots and pans, a linen sheet and other miscellaneous items and we’d travel the neighborhood pulling the wagon. Usually, we’d set up camp in one of our front yards, gather twigs for a make believe campfire, cook a meal, create a tent with the sheet, lay down for awhile and pretend to sleep and get up and do it all over again.

So why am I reminiscing about a childhood game? Because I’m fortunate to be playing TRAVEL with John in our 30 ft. RV for three months. I’m not sleeping on the ground or in a tent, in fact it’s a pretty luxurious way to play travel since I have a sink, stove, shower, bathroom and air conditioning. We’re having so much fun visiting/exploring states we’ve never been to before and we have found folks to be genuine and friendly.

Playing travel when I was young provided entertainment, burnt off some of our energy, and kept us out of my mother’s hair. My adult travel game with John does have a purpose, other than entertainment, and that is to promote my book and raise Huntington’s disease awareness.  But who said it couldn’t be fun?

Therese is donating 100% of the proceeds from her book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, to Huntington’s disease organizations around the world.  In the U.S.-HDSA.  You can purchase it at: http://www.theresecrutchermarin.com