If the question led me here, then I am who I was born to be. Song “Who I Was Born To Be” by Susan Boyle
Empathy has always lived in my heart and that is why serving my fellow man has been my career and life focus. The career I had in healthcare, the last 10 years in hospice, allowed me to help community folks, even my next door neighbor, and after retiring, volunteering for the nonprofit, Huntington’s Disease Society of America (HDSA).
So what was the life changing question that I asked the Marin siblings, many years ago? That question was, “What was wrong with your mother and why was she in Napa State Hospital”? The question was easy, the answer unexpected…….Huntington’s disease (HD). The answer changed my destiny and fulfilled my need to serve my fellow man.
John, Dr. Vicki Wheelock, and myself at the 2017 HDSA National Convention in Schaumburg IL.
On Friday, December 4th, 2015, John and I traveled to his appointment at HDSA UC Davis Center of Excellence to begin the genetic testing process for Huntington’s disease (HD). This Center of Excellence allows anonymous testing where you pay for the cost for the visit and lab work. At this time, it was approximately $1,000.00 for everything and when we received the bills in the mail, it only contained a number that had been assigned to John. Anonymity was important as we did not want John’s test result to find its way to our children, Keith and Vanessa.
It was a poignant time in our lives, as John and I would learn, in about six weeks, how many CAG repeats were on chromosome 4 that would determine if John would eventually have Huntington’s disease.
On the drive to the appointment, we both were quiet, lost in our thoughts. When we arrived and checked in, my heart was pounding in my ears and I felt light headed. I held John’s hand tightly, wondering what was going through his mind.
We were guided into a room, sat down and within a few minutes, Mara Sifry-Platt, genetic counselor entered, sat down introduced herself. She asked my relationship to John and asked if she could create a family tree of the Marin family. I had already created one and handed it to her.
Dr. Wheelock, director of the Center of Excellence, entered, talked with us about the decision to test, asked John to walk as she watched his gait. Then Dr. Scher, a Psychiatrist on the interdisciplinary team, came in and asked John to tell his HD family story.
The last thing to do was to go to the lab and for John to give his blood to be sent off and tested.
HD is caused by a mistake in the DNA instructions that build our bodies and keep them running. DNA is made up of thousands of genes, and people with HD have a small error in one gene, called huntingtin. Over time this error causes damage to the brain and leads to HD symptoms.
The workshop is intended for people with Huntington’s Disease and their caregivers and support networks. Topics will include preparing for medical visits, addressing communication challenges unique to HD, giving voice to patients and caregiver needs and fostering collaborative relationships with medical personnel. Structured communication tools designed specifically to meet the needs of people with Huntington’s will be provided to attendees and discussed at the workshop.
The workshop will include time for questions and discussion.
Dr. Kae Bendixen is a retired physician with experience in medical ethics and teaching patient-provider communication. Dr. Bendixen is from the San Francisco Bay Area and has been diagnosed and cared for family with HD.
HD is an autosomal dominant trinucleotide repeat disorder that causes the progressive degeneration of the basal nuclei. This degeneration leads to clinical symptoms affecting voluntary movement, cognitive impairment, and psychiatric disorders. It’s rare, genetic and fatal and has all the symptoms of ALS, Parkinson’s and Alzheimer’s at the same time. There is NO CURE. Only 41,000 American’s have the disease and 200,000 live at risk and 16% of all cases are children with Juvenile HD.
Thank you Trey for all your advocacy work you do and have done for the HD community! #LetsTalkAboutHD
Trey was diagnosed 19 years ago and given 10-15 years to live. He feels that his work as a professional drummer has helped him fight the disease. He said, “I’m definitely beating the odds. And that’s a good thing. I want to be there for people to say, ‘You can do this. You can have an okay life!” Trey Gray Foundation
Trey played with Faith Hill on her climb to fame for seven years and then played with Jewel. He has been the drummer for the popular country duo, Brooks and Dunn for many years.
Kate Miner is from a Huntington’s disease (HD) family. She is an actress, musician, singer and advocate for HD. Her mother has the disease and her two (2) sisters are HD positive. Kate’s sister,Jenne Coler-Dark is on the Huntington’s Disease Society of America(HDSA) Board of Trustees. Kate and her Hollywood friends started the HDSA HD FREEZE fundraiser and this year will be its 8th year. Before the Pandemic, approximately $400,000.00+ was raised and the last two years it was virtual and raised approximately $200,000.00. Thank you Kate for the advocacy work you do for the Huntington’s disease community
May is HD Awareness Month. Huntington’s disease is a rare, fatal, genetic brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimer’s at the same time and there isNO CURE. 41,000 American’s have the disease & 200,000 live at risk.
Please consider donating to the nonprofit, HDSA, to help fight the disease by conducting research, funding HD clinics and HD support groups around the country, and many free online resources. Since there is NO CURE, HDSA provides services/resources to help HD families have the highest quality to their lives.
#LetsTalkAboutHD is a social media initiative during Huntington’s Disease Awareness Month to encourage families to share their experiences with Huntington’s Disease(HD) throughout the month of May. Huntington’s disease is described as having ALS, Parkinson’s and Alzheimer’s diseases – simultaneously and there is
Most people have not heard of HD and those who have heard the name, Huntington’s disease, do not know how it devastates families for generations.
My husband’s family has had HD in the last five generations. John’s mom had HD as did his three (3) sisters, an aunt, two (2) uncles, his grandfather who committed suicide, and his great grandfather. John has distant cousins in the Carmel Valley, Salinas CA area that are struggling with HD.
The reasons I’m drawn to the many shades of purple is because purple both calms and stimulates our bodies, putting us in the right place for introspection and focused insight. It fosters creativity by awakening our senses while promoting the quiet necessary to make intuitive, insightful observations. Purple creates a harmonious balance of awareness and peace.
Louise Vetter, CEO and President of the nonprofit, Huntington’s Disease Society of America (HDSA), has made increasing the number of HDSA Centers of Excellence, in the U.S., as one of her priorities in her 10- year leadership at HDSA. Louise said, “We are deeply committed to helping families affected by HD access experienced care.”
In 2020, HDSA Centers of Excellence (COE) program expanded to 50 Centers from 47 in 2019, and from just 20 in 2015. The HDSA Centers of Excellence are multi-disciplinary care teams with expertise in Huntington’s disease that share an exemplary commitment to providing comprehensive care.
I was blessed to have worked the last 10 years of my career in a local hospice program that allowed me to truly help my neighbors. Grief, of course, was an emotion our patients experienced and part of our mission was to provide comfort to the bereaved.
The Huntington’s disease community, unfortunately, is suffering from three types of grief: anticipatory grief, pandemic grief and grief from two promising clinical trials that were halted.
“My Journey’s End is a place to which someone or something is going or being sent.”
Throughout my life I’ve had several My Journey’s End; the first was during college when the Marin siblings discovered they were at risk for Huntington’s Disease and I walked away from John because I was scared. After an epiphany, I was sent to John, the love of my life and my Journey’s End for love ended.
Another My Journey’s End occurred during my career in healthcare. In 1991, our children were young and I was working part time managing the Lifeline program at our local hospital in Auburn. I was looking for another part time position to become full time; my anxiety would lessen when I was working full time. One day I ran into the Hospice Director and she asked me to consider the Hospice Support Services Manager position, a part time position. We had just moved Marcia, my sister-in-law with HD, to our town and I was managing her care. I believe I was sent to Hospice, destined, to work and learn from the dying. I see this as My Journey’s End as far as my career and was blessed to work in Hospice for the last ten years of my healthcare career.
Three years prior, Lora, John’s oldest sister, had died from bad fall and Cindy was showing symptoms of Huntington’s disease. Both Marcia and Cindy were on my hospice program and died peacefully at a Residential Care Facility in Auburn.