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Thankful

Family, Thankful

My Family is Everything

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 best family.

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! 

 

 

              

 

 

 

Thankful

Genetic Testing for Huntington’s Disease

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.  

Article on:  Testing for Huntington Disease: Making An Informed Choice

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 Therese donated $9,015.00 to Huntington’s Disease Society of America (HDSA) in December which was the profit from book sales since Therese published in April 2017.

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Thankful

Happy New Year 2018

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                                     

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 sold in the U.S. is being donated to HDSA.

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.

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.

 

 

 

 

 

 

https://youtu.be/3VqQAf74fsE
Thankful

Franklin Delano Roosevelt – Pearl Harbor Address

I’m posting about Pearl Harbor because I had family, they are gone now, who were in WWII.  10336686_525027840942416_5632140100912836372_nMy 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.

27084811410_8862618213_zThese 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

Thankful

Live Like You Were Dying

4644994011_cf29ef10be_bThe 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.

Tim McGraw released the song in 2004.  https://youtu.be/JjRXGqRofE4   4cb933367f3b9b678b7c8ecb1c4d3460

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.

Here are some great quotes on living life to the fullest:  https://www.goodreads.com/quotes/tag/living-life-to-the-fullest

Have a good day!    Therese

Photo credit: 1035 WEZL via Interior Design / CC BY

Love, Thankful

John Anthony Marin-My Touchstone

Scan 5

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,IMG_4621 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

Hope, Thankful

The 1980’s and the NYC Marathon

 

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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.

To learn more about the NYC Marathon Charity Partners Program that HDSA is involved in see: http://www.nyrr.org/charities-clubs-and-community/charities/tcs-new-york-city-marathon-official-charity-partner-program

Remember our daughters, Vanessa and Fran Marin, are on the 2016 HDSA NYC Marathon Team, running for a cure for Huntington’s disease.  Please donate to this worth while cause.

Vanessa’s website is:      https://www.crowdrise.com/HDSANYC2016/fundraiser/vanessamarin

Fran’s website is:  https://www.crowdrise.com/HDSANYC2016/fundraiser/francesmarin

Have a good day!  Therese

 

 

 

Thankful

Happy Dance-Free from HD

IMG_1414Yup!  John and I are still doing our Happy Dance, having just returned from Greece where we danced day and night.  We are so grateful for our life together and have breathed a sigh of relief since John and the kids will not show symptoms of Huntington’s disease.

I will be an advocate for Huntington’s disease until I die because of the huge loss the Marin (Cahoon) family has suffered through five generations.  And my heart breaks when when I read of a Facebook friend struggling and caring for a family member who has the insidious disease.

When I think of how close I came to walking away from the love of my life, I thank God for the strength I found that lead me back to him.  But John and I have lost so much.  John never knew his mother, grandfather, aunts, uncles and lost his three sisters because they all were struck down by HD at an early age. See my Facebook Author Page about my book:  https://www.facebook.com/authortheresecrutchermarin/?ref=bookmarks

Have a great day!   Therese

Thankful

Ahhhhh………..Sleeping Soundly Now

6664088073_9555939e33_bSince I find out John’s gene status for Huntington’s disease was negative, I have slept more soundly than ever before.  And the other wonderful thing is that I’ve been going to sleep as soon as I close my eyes, where before, I could lay there for a long time before sleep found me.

Before, I usually took melatonin or Night Rest, herbal concoctions, or on a bad night, Ambien, to help me sleep. I always envied John because the minute his head hit the pillow, he was asleep.

The YouTube video at the top of the blog is music I used to listen to when I was struggling to fall asleep.  Give it a try and see if it helps.

Have a good day, or maybe, a good night!  Therese

 

Photo credit: Flооd via Foter.com / CC BY-NC-ND