John and I are celebrating the 4th of July this year in Canada. I was attending the 2019 HDSA Annual Convention in Boston, and from there John and I traveled to Waterloo New York and stayed in Gridley Bed & Breakfast for two days to relax.
I have always wanted to see Niagara Falls, and decided to stay on the Canadian side because friends suggested it, so we arrived in Canada on July 2nd. We’re staying at the Villa Alexandrea Bed & Breakfast in Niagara Falls Canada.
From my family to yours, have a wonderful 4th of July.
On this day, the beginning of the new year, I want to take a moment to be thankful, and to remind myself to continue having forgiveness & hope in my heart, and to keep kindness and mindfulness in my everyday activities.
2019 is here and what a great year 2018 was for my family as my father is healthy at 89 years old and my sisters and children are also healthy and happy. It has been a joyous year for the Huntington’s disease community; with the positive outcome of Ionis HTTRx drug and Genentech/Roche moving quickly to setup clinical trials around the world for the now HG6042 drug. Ionis HTTRx program and its future
My sister, Jen, and our dad
John & our children & their spouses
To learn about Genentech/Roche plan, click below on video.
We Can Never Lose HOPE…….
Therese is the author of Watching Their Dance, an inspirational love story while living in the shadow of Huntington’s disease. It can be purchased on her Author Website or Amazon
100% of the profit from the book is being donated to the nonprofit Huntington’s Disease Society of America (HDSA). December 2017, she donated $9,015.00 to HDSA which was the profit from 2017 book sales.
I don’t know what I would do without my family; especially John. My kids, Keith and Vanessa, are also terrific and stand right along beside me, along with their spouses, Fran and Scott. Although I don’t say it enough to them, I have the bestfamily.
I’m blessed and thankful to have these people in my life, knowing they will always be there for me and, in turn, I will always be there for them. My love for them continues to grow along with the appreciation I feel for them. why-family-is-not-an-important-thing-its-everything/
Since I’m a Huntington’s disease (HD) advocate, and an active volunteer with the Huntington’s Disease Society of America (HDSA), I use HDSA’s hashtags, #FamilyIsEverything and #HDSAFamily on my blog, Facebook wall, twitter, Instagram and Google+ posts all the time. What is Huntington’s disease/
Give your family members a hug, forgive and remember, Family is Everything!
Genetic testing is a very personal choice and approximately 7-10% of folks at risk for Huntington’s Disease decide to be tested.
Here is John and my journey to genetic testing:
In 1993, when the test became available for Huntington’s disease, I was thrilled to say the least. I boldly asked John if he would take the test; I thought for sure he would want to know his gene status. It was a selfish act on my part because I’m a control freak and wanted control of our lives, and knowing his status, I thought would allow us to better plan our future. When he said he wanted to continue living with the HOPE that he didn’t have the mutated gene, I understood.
John did test in 2016 when Vanessa and Keith became engaged to be married. John wanted to give his children a definitive answer so they could plan their lives.
On January 8, 2016, John tested NEGATIVE for which we are so grateful.
John and I wish you and your family a peaceful New Year!
Woody Guthrie Festival 7-2017
This holiday season, I took 2 weeks off from posting on my social media platforms to enjoy the Holidays with family and friends and to reflect, and be grateful for the life I’d been given with John, my soul mate.
With the New Year upon us, I’m stoked, motivated and eager to help, once again, in the fight against Huntington’s disease.
So, Huntington’s disease (HD), watch out! I’m back with a vengeance to annihilate you so no, child, adult or family, has to suffer anymore. My 2018 New Year resolution is the same as last year, to heighten HD awareness, promote my nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s Disease, and donate the proceeds to Huntington’s Disease Society of America (HDSA is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease.) http://www.hdsa.org
Story continued from Therese’s blog on August 18th. https://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 Marrying 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: https://www.theresecrutchermarin.com
It’s also available on Amazon and many book websites.
I’m posting about Pearl Harbor because I had family, they are gone now, who were in WWII. My Uncle Bill Roberts, (in the picture above on the right), he was married to my mother’s sister Mary, was in the Navy. Many of my father’s uncles, the Mages family, were in the war, in non-fighting positions, mechanics, MP’s, medics, and two of his aunts served as WAC’s (Women’s Army Corps).
John’s father, Big John, was stationed in the Philipines. He shared a few war stories with the kids before he died. John said he never wanted to talk about it before.
These men and women are to be thanked for preserving our democracy and freedom, and even though most of them are gone, they still deserve our recognition and gratitude. The picture of the cross is the American Cemetery in Normandy, France. Two years ago, when John and I were in France, Belgium, Netherlands and Ireland, we visited Normandy and spent a long time in the Normandy American Museum. It was a very moving experience for me.
Have a good day! Therese
Photo credit: mclcbooks via Foter.com / CC BY-NC-ND
The song by Tim McGraw, LIVE LIKE YOU WERE DYING resonates deep within me since John and I lived our lives as fully as we could everyday. Being shrouded in the uncertainty of Huntington’s disease enriched our lives and, I believe, it opened my heart to love deeply, more deeply than I could have ever imagined. And, because I worked in hospice for ten years, I stared at many dying faces patients) and they were a reminder to me just how precious life was.
I have to admit, it’s hard to be vigilant to this way of thinking every second of every day, and some days I did it better than others. Since I feel I was lead into hospice work, to work with the dying, because I was pretty sure I was going to care for at least two Marin’s, I learned how to incorporate this practice into my life.
John, my person of importance. My significant other. My constant, the person who completes me and makes me whole. He is a true friend without criticism and judgements, who loves me unconditionally. He is my hero.
I feel blessed that we found each other in 1975 on the campus of Diablo Valley College in Pleasant Hill California. It was a love that endured the miles between us since John went away to California Polytechnic University, Pomona, http://www.cpp.edu/ in southern California in the Fall of 1976 and I transferred to California State University, Sacramento http://www.csus.edu/ . In 1979, after three years apart, we both graduated from college and John made his last eight hour drive to Northern California where we began to plan our life together.
We’ve been married 36 years, and there were tough times, but we knew we could get through it together. I respected his opinion as he did mine, and sometimes we had to compromise and that was okay because we loved each other. If someone asked me how we had such a successful relationship I’d suggest they read this article because it holds the truth to our loving bond. https://www.psychologytoday.com/blog/notes-self/201310/8-keys-healthy-relationships
I honestly don’t know how I would have handled the stress of caring for his sisters, raising two children, working full-time without him. He was always my calming force when I felt my life was chaotic and I wanted to close my bedroom door and never come out. And the funny thing is, I wasn’t even the one who was at risk for Huntington’s; he was. A long time ago, I asked him how he handled the stress of living with the unknown and his answer made sense to me. He said, “Therese, I’ve lived with uncertainty my whole life, so I’ve learned to not worry about stuff.” After our conversation, John came home and presented me with the book, Don’t Sweat the Small Stuff….And It’s All Small Stuff. https://www.goodreads.com/book/show/170548.Don_t_Sweat_the_Small_Stuff_and_it_s_all_small_stuff
Thank you John Marin for loving me.
Have a good day! Therese
Photo credit: Www.CourtneyCarmody.com/ via Foter.com / CC BY
In the 1980’s the marathon really took off. Here’s some important events that occurred.
Fred Lebow and Allan Steinfeld recruit some of the world’s best athletes to headline races. These runners include Bill Rodgers, Frank Shorter, Joan Benoit Samuelson, Alberto Salazar, Lasse Viren, Mary Decker Slaney, and Grete Waitz, who eventually goes on to win the New York City Marathon a record nine times.
In 1981, NYRR purchases a townhouse on the Upper East Side to house its “International Running Center.”
By the end of the decade, membership soars to nearly 30,000.
NYRR races are among the first to offer prize money.