Our lives are full of unknowns, from the day we are born into this world it all becomes a journey. There are many quotes about the unknown: i.e. “The unknown is always frightening.” “The challenge of the unknown future is so much more exciting than the stories of the accomplished past.” “You must be fearless to travel on the journey of unknown”.
Living not-knowing is hard. The unknown intruder, Huntington’s disease (HD), moved into our home in 1978 when John and his three (3) sisters discovered their mother had HD. The unknown intruder would show its ugly head in 1984, 1986 and 1994 as each sister-in-law fell prey to HD.
I chose a life of uncertainty, allowing the unknown intruder in our home, which opened my heart to love more deeply, and knowing John could fall prey to the intruder at any time, made my life richer.
Record Timing is the official company that times all Stanford Track and Field events every year. I give credit to my daughter-in-law, Fran, she’s an Assistant Athletic Director at Stanford, for asking Sean to time runners at our event. Thank you Fran.
On Saturday, June 17th, the participants ran & walked on the Los Gatos Creek Trail located at Campbell Parkand the Top 3 runners received a medal.
Today is the last day of the focused HDSA marketing campaign, #LetsTalkAboutHD, for Huntington’s Disease Awareness Month. Just because it is the last day, all the 50 HDSA Chapters & Affiliates around the country continue to raise awareness of this horrific disease.
Recently I had an individual ask me, “What good does it do talking about Huntington’s disease (HD)?”
There are many responses to this question. Here’s some of them.
By heightening awareness, we are educating the public about the disease.
Awareness can help a family struggling with a HD diagnosis to find services/programs they may need.
Explaining the rarity of HD may motivate folks to donate to the nonprofit Huntington’s Disease Society of America (HDSA) to help fight the disease. (there are more than 7,000 rare diseases affecting more than 30 million Americans)
Awareness may motivate folks to volunteer for HDSA.
Being aware of a disease and its symptoms means HD families are more likely to take preventative action, and go for screenings, tests and check-ups.
A lack of awareness of diseases or knowledge of options for screening and treatment is a serious barrier to good health.
Heightening awareness of rare diseases, like HD, are frequently debilitating, and patients may face additional challenges because of the limited knowledge of many rare diseases. Symptoms of rare diseases may resemble those of more common conditions, which often leads to a significant delay in getting a correct diagnosis.
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.
The Marin Family Huntington’s disease (HD) story is not unusual in the Huntington’s disease (HD) world. John’s mother, Phyllis, had HD, was placed in Napa State Hospital and the four Marin siblings father kept her condition a secret.
When John and I became a couple and I got to know his three sisters, Lora, Marcia and Cindy, I asked about their mother and they could tell me nothing.
Lora, Cindy and Marcia Marin
Lora and Marcia confronted their father for information and he dismissed their concerns. Marcia went to County of Napa and requested Phyllis’s death certificate; cause of death, strangulation and underlying cause was Huntington’s Chorea.
HD claimed the lives of my three sisters-in-law over a 25 year period of time. Unfortunately, our children never really knew their aunts which was a tragedy in itself. John and I were beside each of them on their HD journey. Lora drank herself to death, Marcia had heart failure after struggling for 15 years and Cindy wasted away and experienced a sudden death after 17 years.
As a result of being human, joy and sorrow coexist in our lives for the reason that it is unavoidable. Through the years and during dark times, I have gained a better understanding on how to balance joy and sorrow. I see life as a mixture of sorrow and joy that allows us to experience life to its fullest extent.
I believe we humans can feel both ends of the spectrum when missing people that we loved and who are gone from sight. I have learned to be open to joy when it arrives, to take it in through my senses and appreciate it, with the knowledge it is a visitor that comes and goes.
Lora, Cindy, Marcia Marin
I had the joy of knowing Lora, Marcia and Cindy, awesome women, who I had so much fun with for years. Sadly, Huntington’s Disease took them and I was deeply affected by the sorrow my heart felt. After John tested negative for the mutated huntington gene that causes Huntington’s disease (HD), and publishing a memoir, the sadness lifted and I was able to begin working with the nonprofit, Huntington’s Disease Society of America (HDSA) to help improve the lives of everyone affected by Huntington’s disease and their families. #letstalkabouthd
Huntington’s disease (HD) is a rare, fatal, brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimers, simultaneously. There is NO CURE.
Because HD is very rare, HDSA’s business model focuses on its Mission Statement: HDSA is dedicated to improving the lives of everyone affected by Huntington’s disease and their families. HDSA fulfill’s their mission by providing programs and services to HD families across our nation so they may have the highest quality to their lives on their long HD journey.
HDSA’s Vision Statement: A World Free of Huntington’s Disease HDSA also conducts research in the search for a cure or
During this important month for Huntington’s disease, please go to HDSA.org to learn about the disease and consider making a donation to help in the fight against this horrific disease.
On January 16, 2016, after a six (6) week wait for the results of John’s genetic test for Huntington’s disease, John and I sat anxiously in a patient room at HDSA UC Davis Center of Excellence holding hands. We held our breath as Dr. Wheelock gave us the answer we had hoped for.
John was negative!!!!!It was the happiest day of our lives!
At that time, it was only the second time I ever saw John cry. I was so happy it was tears of joy and not sorrow.
To tell you the truth, hearing his CAG count was surreal, almost dreamlike. After committing to a relationship in 1979 with John, marrying him in 1980 knowing he was at risk for Huntington’s disease, and living 39 years at risk, the tension I felt in my chest subsided.
Our daughter Vanessa Garrett
John and our son, Keith.
John’s negative test freed Keith and Vanessa, from having to live a life at risk like their father.
We Can Never Lose HOPE…
May is Huntington’s Disease Awareness Month. #LetsTalkAboutHD Please consider making a donation to the nonprofit, Huntington’s Disease Society of America (HDSA) to help fund research, Centers of Excellence (HD clinics), local and online support groups, disability lawyer to help HD families with their disability claim and many FREE online programs/services to HD families across the U.S.