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Family

A Love Story, Family

Excerpt from “Watching Their Dance”

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’sChapter 17……………….

“On March 1, 1986, Big John drove his daughter to University of  California San Francisco Medical Center.  I’d been worrying about the Marin siblings for eight years, though it felt more like fifty, and many times I’d just wanted to flee.  This was one of them.  I dreamed of escaping with John and Keith into a world that had no illness, no genetic disease, where we could live happily ever after.  But that was a fairy tale.  The reality was–and I had no doubt–that Marcia had HD.  My fear was almost consuming me, but, of course, it was nothing compared to what Marcia must have been feeling.  UCSF Huntington’s Clinic

The neurologists at the medical center had a rating system, which they used clinically and in research, to evaluate a patient’s motor, cognitive, behavioral, and functional abilities on a scale from zero to four, four being the most severe dysfunction.  Marcia would be evaluated in fifteen areas, among them gait, tandem walking, rigidity in arms, tongue protrusion, and ocular pursuit.  

John called that evening to find out how it went, but she didn’t say much, only that the doctors would call with the results in three weeks.  He tried to be upbeat, but you could tell it was a hard conversation.  Even Big John was at a loss for words. Once again, I wished with all my heart that I could simply stop time, so that no more cells in Marcia and Lora’s brains would die and they wouldn’t have to experience any more pain or sorrow.  And that way, HD could never find my love.”

We can never lose HOPE………..Therese

100% of the proceeds from Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a memoir/nonfiction book, is being donated to Huntington’s disease organizations around the world.

To purchase the book, go to Therese’s website:  http://www.theresecrutchermarin.com and Amazon    B&N     Kindle     Kobo      Nook 

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.

Family

Memorial Day in the U.S.

I have fond memories of the holidays when I was growing up in Shawnee Mission, Kansas, in the 1960’s with my aunts, uncles, cousins, Grandmother McKibben and my Grandmother and Grandfather Crutcher.  We lived not too far from each other so every holiday, and some vacations, were spent together.

One of my most vivid memories was the holiday of Memorial Day; for us kids it was the beginning of summer. Mom and Dad would pack my sisters, Ellen, Julie, Jennifer and myself in our big old Chevrolet and head to the Catholic cemetery where Mass would be celebrated.  After decorating the graves of our relatives with American flags and flowers, the family would spend the rest of the day together, usually at Aunt Mary and Uncle Bill’s home, since they had several acres where all the kids could run around.  Mom, Aunt Mary, and Aunt Nancy would call us for dinner and we’d have fried chicken, potato salad, soda pop, green beans, homemade biscuits with jam and, of course, cake with ice cream .

When I was searching for information on Memorial Day, I learned Decoration Day was the precursor of Memorial Day, and was first observed in 1868, following the carnage of the Civil War.

In early May 1868 the Grand Army of the Republic, a nationwide group of veterans of the Union Army, called for a day to remember those who had died in the war.

The Meaning of Memorial Day, From the Civil War On.   http://dailysignal.com/2017/05/26/meaning-memorial-day-civil-war/

Have a wonderful holiday…………..Therese

Therese is the author of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. You can purchase the book on her author website:  http://www.theresecrutchermarin.com

 

 

 

Family, May is HD Awareness Month

Excerpt from “Watching Their Dance”-Ch 10

One Saturday in June, the plan was for “the girls” to go shopping while “the boys” installed a hot tub in Lora and Dave’s backyard. When Marcia and Glenn drove up, Lora and I grabbed our purses and jumped into Marcia’s Datsun 280Z. Sitting in the back, I found a box of tapes and started to look through them. “Are these self-help tapes?” I asked.

“Yes. They’re from est, for Erhard Seminars Training. Werner Erhard’s ideas focus on personal responsibility, accountability, possibility, and transformation. All the big companies are sending their professionals to his five-day training classes, or buying the tapes.” http://www.wernererhard.com/est.html

Lora turned around from the passenger seat and took a couple from me. “How long have you had these, Moochie?”

“Pacific Bell bought them for me last month. It’s nice to listen to them while I’m driving to see a client. You can borrow them if you like.”

I admired Marcia’s determination and tenacity, knowing how she had moved up the career ladder at Pac Bell without a college degree. These tapes were no doubt another strategy to improve her expertise and expand her personal skills, but the timing was interesting.

At Macy’s, Marcia and I shopped for clothes while Lora disappeared into the housewares department. When we met her there an hour later, her face lit up as she showed us a Cuisinart food processor. “Look at this, you guys. Having this could save me so much time and energy.” She looked at the price tag. “Ouch!”

“Maybe it could be a business expense,” I said. “Do you and Anna ever think of starting that catering business you’ve been talking about forever?” Anna was an old friend from Martinez; in the late thirties, her mother had gone to Alhambra High with Big John.

“Oh, we’re still in the planning stage.”

I looked at Marcia. “I think your sister must be in heaven, thinking about cooking all day instead of working for the accountants.”

At lunch, Marcia said, “You know, Lora, having your own catering business has been your dream since you were in high school. You and Anna would make a great team. You should do it.”

I nodded vigorously. I didn’t know if Marcia was thinking what I was, but I couldn’t help adding, “Yes, Lora, you should go after your dream!”

None of us could resist ordering a piece of chocolate pie with our coffee. As I dug into mine, I noticed a twitch in Marcia’s shoulder; it was very slight, but it happened several times. Had Lora noticed it, too? I considered asking her if the opportunity arose, but I was pretty sure I knew how she would react. None of the Marins ever wanted to talk about Huntington’s disease.

We can never lose HOPE……………….Therese

To purchase Watching Their Dance; Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s go to http://theresecrutchermarin.com/purchase-book/

 

Family, Huntington's Disease

May is Huntington’s Disease Awareness Month

Let’s Talk about Huntington’s Disease (HD) Because May is HD Awareness Month!

WHAT IS HD?

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.

Most people do not know that Woody Guthrie, folk singer, died from HD.

Resources for Huntington’s disease:

Huntington’s Disease Society of America   http://www.hdsa.org

Help 4 HD International   http://help4hd.org/

We Have A Face   https://www.wehaveaface.org/

We Can Never Lose HOPE…………………….Therese  

 

Family, Love

The Many Blessings in my Life

John and I have been blessed in so many ways, more ways than I ever thought possible.  Our relationship endured through the difficult years of caring and watching over his three sisters, Lora, Marcia and Cindy, who were stolen from us by the insidious Huntington’s disease.  As I watched them succumb to the disease, over 28 years, I also was praying my love would not be stolen from me and my children.                                             (What is HD)  http://www.hdsa.org 

My family’s greatest gift came last year when John tested negative for the mutated Huntington’s Disease (HD) gene.  This in turn meant, our children would not live a life at risk and for that I am forever thankful.  Now, HD will not touch another Marin ever again.   http://predictivetestingforhd.com/

John and I  have so many things to be grateful for: our children and their spouses, our health, our wonderful retired life together, my father’s health at age 87, my two sisters; Jennifer and her husband Matt, and Ellen, my nieces and nephews…………………and many others, too long to list.

Sometimes we need to stop, and, as the saying goes and, Count our blessings!

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s can be purchased on my author website: http://www.theresecrutchermarin.com

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Have a good day!  Therese

 

 

 

Family

The Many Challenges in our Lives

We all are confronted with challenges in our lives that we must find the strength to overcome. These challenges come in many forms: a serious medical condition, a divorce, an autistic child, financial devastation, a difficult teenager, death of a spouse/child/parent or living at risk for a genetic disease like Huntington’s disease.

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is a story of a young woman, Therese, who learns to live with unimaginable uncertainty by making changes in her life so she can live happily and as fully as possible with the man she loves. It’s an inspirational story of hope as Therese shares the difficult path she has chosen opened her heart to love more deeply and made her life that much richer. By reading Watching Their Dance you will be:

Inspired…………….Filled with HOPE…………Learn about Mindfulness…………   And………Empowered to Make Changes in Your Life

 

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Have a good day!   Therese

Family, Helping Others

HDSA Team HOPE Walk in Sacramento

The 9th Annual Sacramento Team HOPE Walk is June 24th!!!!!!!!

Registration starts at 8:00 am and Walk begins at 9:00 at William Land Park in Sacramento.

Register to Walk:   http://www.hdsa.org/thwsacramento

Northern California Chapter website:   http://www.hdsa.org/norcal

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. There are many different fundraising strategies you may use to have a successful fundraising campaign, and HDSA suggests you use all of them! Please download the Team Hope Walk Participant Packet and check out the Team Hope website’s Fundraising Tips & Tools (including some fundraising webinars!) and Participant Resources sections.

There will be music…………………………..raffle prizes………………………………… and food

 

 

 

 

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Enjoy your day!  Therese

Photo credit: Randy Heinitz via Foter.com / CC BY

 

Family

Family is Everything

14611099_1121862207899646_3429514821784306086_nThe phrase, “Family is Everything” appears often on Facebook pages of Huntington’s Disease Organizations, individuals, and Huntington disease organization websites throughout the world. Since I have over 3,100 Facebook friends around the world, many having been touched by Huntington’s disease, one particular gal, through her actions, is a true reflection of these words.

Her story has touched my heart since it involves her sister, who has Huntington’s disease. To protect her privacy, ’ll call her Susan and her sister, Mary. Susan, left her home of many years and moved to the state where Mary lives in a nursing home. She has dedicated herself to her sister, inspiring to provide Mary the higher quality of life for as long as possible. Susan shares on her Facebook posts her frustration with her sister at times, but she doesn’t give up. She reiterates her devotion to her sister.

But the truth is, not all individuals with Huntington’s disease have the support of their families. Huntington’s disease is protracted with dementia and ultimately one needs 24 hour care. The disease wears out caregivers physically and drains them emotionally. No one is to blame; folks do the best they can and make the best decisions they can at the time.

So, I commend Susan and all the HD families that care for their loved one. Hail to all caregivers!

Have a good day!  Therese

 

Family, Love

Merry Christmas from the Marin Family

My family wishes you a Merry Christmas and we hope you have a safe and peaceful holiday with your family and friends.

scan-1During this time of the year, I reminisce about my childhood Christmas’s with my parents, Jim and Rita and my three sisters, Ellen, Julie and Jennifer.  My dad would blinds the four of us with camera lights as he took movies on those Christmas mornings. As we got older, we’d squint and try to hide since we were in curlers, slippers and robes.

I also dream about the many Christmas mornings with our children, Keith and Vanessa, when they were growing up.  Those times are just as unnamed-5precious to me.

The human memory has the capacity to store significant moments in our lives and have a poignant effect on us as we grow older. Hold on to those memories; they are proof you have lived!

Cheers from the Marin Family.  6569118411_47711f984e_m 

 

 

 

 

Photo credit: Southernpixel – Alby Headrick via Foter.com / CC BY-NC-ND