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#cure4hdandjhd

Kindness, Love

The Hero’s In My Life

Like many people, I have several hero’s that I hold in high regard.  Most of them, for me anyway, are women who have inspired me, taken chances and usually succeeded, stepped outside their comfort zone to achieve their goal(s). 

#1. Elisabeth Kubler-Ross-A Swiss-American psychiatrist, a pioneer in near-death studies and the author of the groundbreaking book On Death and Dying (1969), where she first discussed her theory of the five stages of grief, also known as the “Kübler-Ross model”.   https://en.wikipedia.org/wiki/Elisabeth_K%C3%BCbler-Ross 

Since I worked in hospice for 10 years, I’m grateful to her for starting the conversation on dying and how hospice can assist the dying to have the highest quality to their life until they pass.  She created the first hospice house in England, and the hospice idea moved to the U.S. in the 1960’s.

#2.  Mother Teresa-Known in the Catholic Church as Saint Teresa of Calcutta, was an Albanian-Indian Roman Catholic nun and missionary. This woman emits unselfishness, kindness, love and hope.   https://en.wikipedia.org/wiki/Mother_Teresa  

#3.  Lora, Marcia and Cindy, are my hero’s not just because they had Huntington’s disease; it was their attitude towards life, and how precious it was to them despite their circumstance.  Also, they were the kindest, most generous, positive women I’ve ever met.   What is Huntington’s disease 

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.

We Can Never Lose Hope………………..

 

Love

Loving Deeply

Forty years ago, I chose to be with John despite his unknown gene status for Huntington’s disease (HD). This may sound a little crazy, but living at risk for Huntington’s disease with John, for 38 years, and the precariousness of the situation, fortified my marriage.  I say this because when knowing my world could change over night, and steal what I loved most in this world, made me appreciate John everyday, never taking him or our relationship for granted. Living_at_risk_of_HD_  

And, I learned to love more deeply in the shadow of John’s mortality.

John and I rarely fought, we had some disagreements, but never got mad at each other.  Life is just too short not to forgive because we are all human and we all make mistakes.

The things I learned through this journey with Huntington’s disease looming over us, was to appreciate what I had in my life at that moment; I lived mindfully.  Also, John and I also didn’t put off the things we wanted to do and we able to create so many wonderful memories together with our children.  12 Indispensable Mindful Living Tools 

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.

 Subscribe to Therese’s Blog via Email

 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, via email.

Family

Ten Years Ago

Ten years ago this month, John and I lost the last two members of his immediate family.  His father, I called him Big John, passed away from bladder and colon cancer at age 86.  Cindy, my third sister-in-law would succumb four weeks later, to the monster I grew to despise, Huntington’s disease, at age 54. 

         

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.   http://www.hdsa.org  

It was a difficult time for us, to say the least, and the twenty-four years of anticipatory grief had taken its toll.  John and I had each other, that was so important, and we slowly regained our strength.  It was shortly these losses that I began searching for something good that could come out of my family’s tragedy.  I found it in my story.

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.

 Subscribe to Therese’s Blog via Email

 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, via email.

 

 

 

 

Resources

UC Davis Huntington’s Disease Clinic

The UC Davis Huntington’s Disease Clinic is recognized as a Huntington’s Disease Society of America (HDSA) Center of Excellence for their expertise in clinical care for Huntington’s disease patients. The Huntington’s Disease Clinic is one of the largest in the country and the only Level 1 Center of Excellence in Northern California. It is led by UC Davis faculty members in the Department of Neurology. In addition to clinical care, patients also have access to emerging new treatments through clinical trials.  Please click on  https://www.ucdmc.ucdavis.edu/huntingtons/     to see the full website.

The UCD Center of Excellence (COE) offers anonymous testing which most COE’s don’t have available to their patients.  John was tested in January 2017 and we tested anonymously; John was just a number and the bills were addressed to the number.  It reassured us that if his test was positive, it was not, that our kids would not be linked to his file.

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.

Therese and John donated $9,015.00 to HDSA in December which was the profit from books sold in the U.S. since she published in April 2017.

 

A Love Story

Chapter 4-Walking Away

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s

Excerpt from Chapter 4-Walking Away-page 42

“Therese, it’s Sue.” Sue was a college friend who worked in the women’s-accessories office.  “Are you sitting down? This is terrible.  You’re not going to believe it.”

“What? What happened?’

Between sobs, Sue said, “Heather’s husband got on a plane in Chicago to come home from his business trip, and it crashed just after takeoff.  He died.”

My hand went over my mouth. “Oh, my God!” I rocked back in my chair, feeling as if I’d been punched in the stomach.

“Hello, hello.  Are you still there, Therese?”

“Yes, yes, I’m here. Oh, how horrible!” Now I started to cry. Poor Heather! They were such a happy couple.  They had their whole life ahead of them!” My brown furrowed as I heard familiar words escaping my mouth. “I guess you never know what’s going to happen in life.”

As I groped in a drawer for a tissue, Jerry patted my should, packed up his ties, and said he’d call me next week.  The assistants quickly gathered in Sue’s office, where she had a small TV. The newscaster said, “American Airlines Flight 191 took from O’Hare International Airport in Chicago at eleven a.m., and moments later, it crashed.  Two hundred and fifty-eight died, along with thirteen crew-members and two people on the ground.  An investigation by the FAA will begin tomorrow.

The rest of the afternoon was a blur.  The whole buying office was quiet, with none of the buzz usually heard throughout the department.  Trying to get some work done, I looked down at my desk pad and found you never know what’s going to happen in life written all over it.  The words stared back at me as I attempted to read the secret lying between the lines.”

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 books purchased in the U.S. is being donated to Huntington’s Disease Society of America (HDSA).

 Subscribe to Therese’s Blog via Email

 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, via email.

 

 

 

 

Therese-Author

Promoting “Watching Their Dance” at the 2018 HDSA Nat’l. Convention

In December 2017, John and I mailed a $9,015.00 check to Louise Vetter, Huntington’s Disease Society of America (HDSA) President and CEO, which was the profit from books sold since I published Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s in April 2017. 

Louise sent an email thanking us for our donation, and it was then I asked if I may sell my book again at the 2018 National Convention scheduled for June 7-9 in Los Angeles. Her response was, “We’re happy to offer you the same opportunity as you had at last year’s Convention”.

Well, I’m thrilled to say the least.  Last year at the National Convention in Schaumburg, IL, I sold 63 books in three hours.  And the convention attendance was the highest in its 32 years; approximately 1,000 folks.   

So, I hope to see many of my Facebook Friends at the convention.  Please stop by my table and buy a book; $7.00 will be donated to HDSA for every book sold.  

We Can Never Lose HOPE……………

To see 2017 Convention highlights, go to:   http://hdsa.org/about-hdsa/annual-convention/2017-2/  

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, Dr. Vicki Wheelock, and myself at the 2017 HDSA National Convention in Schaumburg IL.

HOPE Walk held outside convention center at the 2017 HDSA National Convention in Schaumburg IL.

John, myself and Natasha Boissier LCSW at 2017 HDSA National Convention in Schaumburg IL.

 

Mindful, The Marin Siblings

Excerpt from Chapter 18-Watching Their Dance

Chapter 18-A Pre-Symptomatic Test for Huntington’s Disease, Page 153-Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s

“I never forgot that John was now in the high-risk age range and would be for another eight to thirteen years.  Over the past few years, I had realized that this uncertainty, which I had take on willingly, had opened my heart to love much more deeply, and acknowledging that my world could change in a heartbeat made my life with John so much richer.  Life was just too precious to waste a minute arguing over any small stuff.  

Lora, John and Keith in our backyard in 1985. Lora was living with us.

I had learned to overlook shortcomings and compromise without anger.  And the Marin siblings had taught me about forgiveness and unconditional love, traits not common in my family.  I forgave Dave time and time again and never for a moment stopped loving Lora, even when she hurt my feelings.  

Letting go of the anger I felt when I couldn’t control a situation calmed my OCD to a manageable level, and lessing my anxiety allowed me to relax and find joy in the simple things.  Perceiving the future as a blank canvas helped, as did not dwelling on it.  Keith remained the best method of staying in the present, and I drew strength from being physically near John, ever the optimist.  Staying focused was key to this constant battle.” 

 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. will be donated to HDSA.  http://www.hdsa.org     Therese and John donated $9,015.00 to HDSA that is the profit from book sales since Therese published in April 2017.

 Subscribe to Therese’s Blog via Email

 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, via email.

 

 

 

 

Caregiving

Caring for the Caregiver

When I was working in hospice at our local hospital in Auburn CA, the interdisciplinary hospice team addressed the needs of the patient and the family. The family unit was the focus of the care we provided. Caring for a loved one strains even the most resilient people, so the wellbeing of the caregiver, or carepartner, is vital to the patient remaining at home with their family; where their memories were made.  Click here for info on hospice care:  https://www.nhpco.org/

When I’ve attended a Huntington’s Disease Education Day in the past, there always is a discussion about the wellbeing of the carepartner.  I picked this brochure up at the Education Day at Kaiser Permanente in Sacramento last year and thought I’d share it with you.

CAREGIVER’S CORNER WEBINARS-Presented by Huntington’s Disease Society of America (HDSA)

  http://hdsa.org/living-with-hd/caregivers-corner-webinars/  

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.

Therese and John donated $9,015.00 to HDSA in December which was the profit from the book since it was published in April 2017.  

Helping Others

Sacramento Huntington’s Disease (HD) Support Group

People have asked me why I attend the monthly HD support group in Sacramento when I currently do not have anyone affected by the disease?  Yes, my three sisters-in-law are gone, stolen from us by the insidious HD, but they are not forgotten.

I take part in the meetings in honor of Lora, Marcia and Cindy’s struggle with HD.  For over 25 years, John and I lovingly cared for and helped his three sisters through the disease process, without a support system, as neither a support group nor HDSA Center of Excellence existed in the late 1980’s and 1990’s in the Sacramento area.

Being present for those struggling with HD, listening, acknowledging their experience, pain, fears and doubts, and offering advice, gives me peace.  I will always have compassion in my heart for HD families, and have a need to help in some small way, because I know what they are going through.  If I could have talked with a HD family that was going through what John and I were experiencing, it would have been life changing for me.

If you’re considering joining a support group, this article might be beneficial to you:      http://davidsusman.com/2015/04/23/9-benefits-of-support-groups/  

Click on link for a larger picture of the list of support groups in Northern California:   https://www.ucdmc.ucdavis.edu/huntingtons/files/support_groups.pdf  

HDSA also offers free ONLINE SUPPORT GROUP MEETINGS.  To register please go to:   http://hdsa.org/osg/

We Can Never Lose HOPE………………

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 books sold in the U.S. are being donated to HDSA.  John and Therese donated $9,015.00 last December which was the profits from books sold since Therese published in April 2017.

 Subscribe to Therese’s Blog via Email

 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, via email.