From my family to yours, Happy Thanksgiving!
We Can Never Lose Hope………….
Many of you may not know that Kate Miner, actress, musician, Huntington’s Disease (HD) Advocate has HD in her family. Her mother, and two sisters tested positive. Kate tested negative. What-is-HD?
Last year, when I was publishing my book, Watching Their Dance, I reached out to Kate requesting a book jacket comment. She graciously agreed and her comment appears on the front cover. Kate and her husband are supporters of the HDSA FREEZE HD event that was held on Sept. 22, 2018 in Los Angeles.
A few days ago, I found this awesome film, The Race, that includes Jenne Coler-Dark’s HD story, Kate Miner’s sister and who is gene positive. Read Jenne Coler-Dark’s Story
The film is about a young, idealistic Huntington’s Disease researcher who comes face-to-face with three generations of a family devastated by the fatal, incurable disease she studies. For the scientist, who has never met anyone with Huntington’s Disease, the stakes of her research become real. For a Huntington’s Disease patient at the center of the story who is watching her mother sicken, fearing her own demise, and afraid for her two kids, it’s a mother’s plea – and a race against time
To watch the film, please click on link below:
100% of the proceeds from the book are being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). It’s available on many book websites like Amazon.com
We Can Never Lose HOPE……………………….
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!
I haven’t written about Hospice care for awhile, so I thought I’d post this article on the benefits of palliative and hospice care, at the end of life, which applies to everyone, because none of us get out of this alive.
The last 10 years of my career in healthcare was in hospice care and it was the most fulfilling work I have ever done in my life. It was privilege to be allowed into community folks homes to support the patient and family as they prepare for the inevitable loss of their loved one. For info on Hospice care, go to: https://www.nhpco.org/
If you have a loved one challenged with a chronic disease, talk to their doctor about hospice care before there is a medical crisis. Hospice care is covered under Medicare, Medicaid and most private insurances also cover it. https://medicare.com/coverage/medicare-cover-hospice-care/
My two sisters-in-law, Marcia & Cindy, we’re patients on the hospice program that employed me.
We Can Never Lose Hope……..
People ask me, “Why do you donate your time to help in the fight against Huntington’s disease (HD) when it will not ever affect your family again?”
Yes, John dodged the Huntington’s disease bullet, he didn’t inherit the mutated huntingtin gene like his three (3) sisters and mother and for that we are so grateful. http://hdsa.org/what-is-hd/#risk
I do it because I don’t want anyone to feel alone like John and I did when Lora, Marcia and Cindy were struggling with the disease process. In the 80″ & 90″s support groups were non existent and there were very few neurologists knowledgeable about HD.
Today, there is so much support, information, and neurologists available to families so I spend much of my time on social media getting the word out. Facebook has HD support groups you join and there are many online support groups facilitated by social workers. http://hdsa.org/osg/ http://www.hdscn.org/ https://help4hd.org/
So, don’t give up! Help is out there!
We Can Never Lose HOPE…………….
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 heartwarming story about Natalya Gonzalez, whose family struggles with Huntington’s disease. The family lives in the County of Yolo, a county located in the northern portion of the U.S. state of California. http://hdsa.org/living-with-hd/juvenile-onset-hd/ http://hdsa.org/what-is-hd/
“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 Team HOPE 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
We Can Never Lose HOPE….
My family is everything to me and when I think back to how I almost didn’t have John, his three sisters, Keith, and Vanessa, in my life, I get goose bumps. My three sisters-in-law were a huge part of John and my life and after losing Cindy, the third sister to die from complications of Huntington’s disease (HD), I was looking for something good that could come out of my family’s tragedy.
That’s when I started writing John and my inspirational love story, Watching Their Dance, while living in the shadow of Huntington’s disease. The book honors Lora, Marcia and Cindy while heightening HD awareness and generating dollars to help in the fight against the cruelest disease on the plant.
“Behind every exquisite thing that existed, there was something tragic.” ~Oscar Wilde
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 , Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.
100% of the proceeds from Therese’s book is being donated to Huntington’s Disease Society of America.
We Can Never Lose Hope………………..
In the following video are the faces of Huntington’s disease (HD); a devil of a disease that attacks adults and children. Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It’s like having ALS, Parkinson’s and Alzheimers at the same time. 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://hdsa.org/what-is-hd/
My three sisters-in-law, Lora, Marcia and Cindy had HD and are now gone from our sight. http://www.theresecrutchermarin.com
There is no cure or therapy at this time.
Video taken at the Huntington’s Disease Society of America (HDSA) Annual Convention, June 7-9-18, in Los Angeles, CA and I was there!
We can Never Lose HOPE….
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.