My sisters-in-law, Lora, Marcia and Cindy were my friends, kind, gentle women; they didn’t chose to have Huntington’s disease (HD); it wasn’t their fault.
HD is a fatal genetic disorder that progressively destroys the nerve cells in the brain. There is NO CURE. It’s like having ALS, Parkinson’s and Alzheimer’s at the same time. http://www.hdsa.org
Fear, anger, sadness overwhelmed me at times and I’m thankful for the counselor I had and for working in the healthcare industry. I wish I could have done more for Lora, Marcia and Cindy; I did the best I could at the time. So, after 10 years, I’ve forgiven myself.
“Forgiveness does not change the past, but it does enlarge the future.”~Paul Boes
“The truth is, unless you let go, unless you forgive yourself, unless you forgive the situation, unless you realize that the situation is over, you cannot move forward.”
― Steve Maraboli, Unapologetically You: Reflections on Life and the Human Experience
Therese at the 2018 HDSA Annual Convention in LA selling her book.100% of the proceeds go to HDSA.
John and I have been connected to the Huntington’s Disease Society of America (HDSA), a nonprofit dedicated to improving the lives of anyone affected by Huntington’s disease (HD) for many years.
Shana Verstegen with her mother who had HD.
It began long ago, 1978, when John’s family secret was discovered; his mom had HD. I’ve received newsletters and info from them for over 20 years and we have donated to the organization regularly as did John’s father. http://www.hdsa.org
So, I’m shouting out about the HDSA Northern California Chapter’s fundraiser on Sept. 8th, the Sacramento Team HOPE Walk. John and I have created “The Marin Team” and want to raise $1,000.00. Here’s the link to register for the Walk or to make a donation to the event. Any dollar amount is helpful in the fight against HD. (HD is a fatal, genetic brain disorder that affects children & adults & there is no cure. It’s like having ALS, Parkinson’s & Alzheimer’s at the same time.)http://www.hdsa.org/THWSacramento
In January of 1988, after Vanessa was born, John and I decided that I wouldn’t return to work and stay home for a couple of years while the kids were young. John was making good money at Placer County, and we had money in our savings account, so I was comfortable living on one paycheck. A Walkthrough Guide to Panic Disorder
At the time, I had two sisters-in-law, who lived locally, challenged by Huntington’s Disease (HD); Lora, severely depressed and drinking herself to death and Marcia, officially diagnosed at UC SF Medical Center two years earlier. What is HD A few months after I resigned from my management job in Sacramento, I began having panic attacks. John’s unknown gene status weighed heavily on my mind. A Walkthrough Guide to Panic Disorder
To ease my anxiety, I decided to pursue a Masters degree in Healthcare Administration. Additional education, I felt, made me more marketable, and would replace time lost in the workforce. I believe knowledge is power and as I studied I became confident that I would secure a job at our community hospital in Auburn, CA which I did in 1991.
The Sacramento Team HOPE Walk is Sat., Sept. 8, at the River Walk Park in Sacramento. To register or make a donation to the event, go to:http://www.hdsa.org/THWSacramento
“A typical day for Natalya Gonzalez involves far more responsibilities and challenges than those of an average sixth-grader. The Yolo Middle School student balances schoolwork with family responsibilities as she pitches in at home to help her mother care for her father and an older sister, who both suffer from Huntington’s Disease, a debilitating genetic disorder.” Full article: Yolo Student Thrives Despite Challenges
The Huntington’s Disease Society of America Northern California Chapter is organizing a Sacramento TeamHOPE Walk to help families, like the Gonzalez’s. Come out and walk on Saturday, Sept. 8th, at the River Walk Park in West Sacramento. To sign up or donate to the event, go to http://www.hdsa.org/THWSacramento
When I made a conscious decision to marry John, despite his unknown gene status for Huntington’s disease (HD), I knew full well the possible consequences of my decision. I was only 23 at the time, very naive, and didn’t really understand the ramifications of this horrific disease. HD is a fatal, genetic disorder that progressively destroys the nerve cells in the brain. There is no cure. http://www.hdsa.org
With the 50/50 chance of inheriting the disease, I knew, based on statistics, that at least two (2) of the four (4) Marin siblings would carry the mutated huntingtin gene. Who is at risk: http://hdsa.org/what-is-hd/#risk
But, what I didn’t realize, was that it would be so hard, so emotionally depleting, so sad in so many ways.
My advice to those struggling with a challenging issue, like Huntington’s disease, is to:
Talk to a counselor
Talk with your primary care physician about anti-depressants
Attend a support group that addresses the issue
Have open communication with family
And never lose HOPE
Two good articles to help you through tough times:
Last week, the HDSA Northern California Chapter Board members met with Dr. Vicki Wheelock. Lisa Kjer, social worker, Kathryn, Huntington’s D Clinic RN at UC Davis Medical Center, HD Clinic, to brainstorm how to increase the Chapter’s community disease outreach and fundraising. https://www.ucdmc.ucdavis.edu/huntingtons/
The Chapter is dedicated to improving the lives of everyone affected by Huntington’s disease and we do this by generating dollars to help in the fight against this horrific disease that has no cure. Through our fundraising efforts the Chapter supports/funds the HD Clinic, seven support group facilitators and the HD social worker.
John and I have just returned home from the Huntington’s Disease Society of America (HDSA) Convention in Los Angeles, California where I promoted my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. Author Website: http://www.theresecrutchermarin.com
The question I get asked most often when I interact with folks is, “Why did you decide to write a book?” My reply is, “The motive was purely selfish because I was looking a way to heal from the loss of my three sisters-in-law to the cruelest disease on the planet; Huntington’s disease”. Article: The Healing Power of Telling Your Story
In 2008, Cindy, my third sister-in-law passed away and in 2010, I began writing my story. A counselor I’d seen for years suggested I write a book as a way to heal. Seven years later, in 2017, I held a book in my hands and could honestly say, “the process of writing my story, validated what I had gone through, and allowed me to move the grief I harbored to the pages of the book; so, yes, I have healed”.
When I began writing the nonfiction book, Watching Their Dance, it developed into a Labor of Love, a new expression of my love for my three sisters-in-law. After Cindy died in 2008, I was looking for something good and positive to come out of Lora, Marcia and Cindy’s struggle with Huntington’s disease. The idea of sharing our family’s experience with HD was born out of this tragedy. What is Huntington’s disease?
John and I both mourned the death of each of sister even before they we gone from this world because Huntington’s disease shrinks the brain and dementia and cognition problems occur. Both Marcia and Cindy’s eyes were vacant the last years of their lives and I still tear up when I think about it. Info on grief and loss: https://www.centerforloss.com/2016/12/journey-grief-six-needs-mourning/
I worked on the manuscript for seven (7) years, learning the craft of writing, attending writing conferences, seminars and in 2015 I began working with an editor and published in April 2017. Writing John and my story and publishing it was the most rewarding thing I’ve done in my life and I’m very proud of the accomplishment. At the same time, it’s the hardest thing I’ve every done except for giving birth to my children, Keith and Vanessa, which also was a labor of love.
Therese will be selling her memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, at HDSA Annual Convention, June 7-9. The book is available on her author website http://www.theresecrutchermarin.com & on Amazon,B&N, & in Kindle, Kobo,Nook, iBooks format. 100% of the profit from the book is donated to HDSA.
Therese and John donated $9,015.00 to Huntington’s Disease Society of America (HDSA) which was the profit from her book since she published in April 2017.
Every now and then, you will find a Huntington’s disease patient featured on a TV show, usually in a medical oriented show/soap opera, etc. House is one such program, and there are others. I’ve listed the three scenario’s that appeared on House. Actor Hugh Laurie stars. https://en.wikipedia.org/wiki/House_(TV_series)
#1. A seemingly fit and healthy personal trainer collapses while filming an exercise DVD, but her symptoms convince House she is hiding something – and gaps in her medical records increase his suspicions. Meanwhile, Thirteen begins a clinical trial for Huntington’s disease as her nerves begin to degenerate. http://www.huntingtonsdiseasefoundation.org/
#2. The grumpy medic treats a 16-year-old girl who collapsed at her school’s Christmas pageant. He determines her liver is failing, but cannot fathom why. Meanwhile, Foreman and Thirteen grow closer during the trials for the Huntington’s disease drug. https://www.wehaveaface.org/
#3. A man suffering chronic and severe pain makes an unsuccessful attempt to commit suicide. The grumpy medic agrees to take up his case, but is himself racked by intense pain in his leg. Thirteen receives help from Foreman while taking part in his Huntington’s disease clinical trial. http://www.hdsa.org
100% of the proceeds from Therese’s book sold in the U.S. will be donated to HDSA. http://www.hdsa.org Last December, Therese and John donated $9,015.00 to HDSA that was the profit from book sales since Therese published in April 2017.