It’s a shock when families learn that Huntington’s disease is in their family. I remember in 1978 when my three (3) sisters-in-law, Lora, Marcia and Cindy found their mother’s death certificate from Napa State Hospital and the underlying cause of death was Huntington’s chorea.
HDSA Social Workers are often the first voice that someone new to #HuntingtonsDisease may hear. #SocialWorkers offer information, education & access to community-based services within a specific region. Lisa Kjer-Mooney at HDSA UC Davis Center of Excellence is an awesome social worker that can help you find resources and support in Northern California.
As we proceed into the new year, a new chapter, a fresh start, embracing new years resolutions into our lives, I’m focusing on three (3) ways, there are many acts, that I can show humanity to others. Humanity refers to the KIND feelings humans often have for each other:
Hello Human Kindness
Always Look for the Good In People …
Give Back To The Community
In my career I strived to work in a positive community that permitted me to serve our fellow man. Hospice work allowed me to care for those dying and their families.
Over the years at my annual physical with my primary doctor, Dr. Shariati, who I’ve seen for years and consider her a friend, we always talked about my involvement with the nonprofit, Huntington’s Disease Society of America (HDSA). As she checked my vitals and other important parts of my body, we talked about Huntington’s disease, and she said, “people who volunteer live longer”.
When you think about this statement, it boils down to helping people and adding this activity to your life can have a positive impact on your own well-being from relieving stress, depression and loneliness. Why is Volunteering Important?
Giving back or giving to others is just as important to a healthy lifestyle as fulfilling their own dreams. As a Huntington’s Disease advocate, volunteering for the HDSA San Francisco Bay Area Affiliateis fulfilling my dream by helping Huntington’s Disease families in my community.
I’m a Huntington’s disease (HD) advocate because my three sisters-in-law, Lora, Marcia and Cindy were victims of the cruelest disease on the planet. I hope to witness a therapy or even a cure in my lifetime so I chose to be involved with the nonprofit, Huntington’s Disease Society of America (HDSA) in this quest.
A quote from Dr. Marie Didiot, grant recipient of the Human Biology Project. “Fundraising is one of the major challenges in research. Providing awards in the HD community, as does HDSA, is encouraging researchers to focus on HD and attracted more students with new potential and skills.“
New York, NY, December 20, 2022 – Once again, Congress has failed to take action to ensure that families affected by Huntington’s disease (HD), a devastating brain disorder that impacts more than 200,000 American families, have uninterrupted healthcare coverage. The FY23 Omnibus Appropriations Package, which will be voted on later this week, does not include provisions of the Huntington’s Disease Parity Act (S. 868, H.R. 2050) which would eliminate the two-year waiting period for Medicare coverage and Social Security Disability Insurance (SSDI) benefits for those who qualify for federal disability because of the serious progression of their Huntington’s disease.
For HD-affected families, congressional inaction has real consequences. Families affected by HD will continue to have to brace themselves for two years without medical care in a system that puts their needs at the bottom of the congressional priority list. Two years is too long for someone disabled by their incurable neurological disease to suffer without medical coverage, and Congress could close this loophole for relative pennies on the national budget.
Unfortunately, despite 12 years of advocacy, HD families will continue to suffer federal neglect and wait for the Medicare and SSDI systems to support their health needs. HDSA will stand by them and support them until appropriate care and a cure is available to all.
As we approach Christmas Day, a sacred day when Christ was born, I reminisce about the years growing up in a Catholic community and wonderful memories of Christmas with my cousins, aunts, uncles.
My family were staunch Catholic’s and St. Pius X parish, in Mission Kansas, was our community. My two sisters, Ellen, Julie and myself attended elementary school there. Every year during the Christmas season, a huge manger scene was set up in the vestibule with a padded kneeler. I have a picture from 1966, that was in the local newspaper, with my mom and my older sister, Ellen, kneeling at the nativity scene.
“Angels We Have Heard on High” is wonderfully sung and orchestrated in this video,
History of St. Pius X
St. Pius opened on May 27, 1955. On January 27, 1956, St. Pius X School opened its doors to 290 students. Fr. Glowacki served St. Pius X to 1971. (I attended St. Pius from 1961-1969 and I was scared to death of Fr. Glowacki)
As some of you know, I call Huntington’s disease (HD), the cruelest disease on the planet. It’s the Holiday Season, a time we celebrate with family/friends and, it can be a difficult time for HD families who have lost loved ones. When I see obituary’s on folks who have passed away from a complication of Huntington’s disease in the holidays, my heart aches for the family. (I’m also sad when it’s not the holidays)
Experts on grief suggest we remember, new memories does not erase old memories. These memories are precious and can bring comfort to the difficult time. Also, because we LOVE, grief is the price we pay. It is a huge price paid! (it’s not something we think of when we fall in love with someone, or our love for son’s, daughter’s, mothers, fathers, friends, etc.)
Once upon a time, in the land of uncertainty, there was a young college girl who tried to control every aspect of her life; she lacked spontaneity, felt uncomfortable without a plan, so she always had a plan and a backup plan in case the first plan failed. In other words, she was a control freak.
Until her senior year in college, Therese had been successful living her life in this manner. Her prince, John Marin, entered her life in her sophomore year and she fell irrevocably in love with him and planned a life together after college.
Then a cruel, frightening, uncontrollable, despicable, incurable monster entered her life; its name was Huntington’s disease (HD) and John and his three sisters were at risk for inheriting the disease.
Huntington’s disease was not to be controlled so Therese planned to not let Huntington’s disease control her. She married her prince even though his future is precarious. It’s not to say it was easy but over time HD offered her lessons that gave her a sense of control; incorporating mindfulness and forgiveness into her life, having HOPE, not taking anything for granted, cherishing John and their life, not sweating the small stuff.
In 2016, in the land of uncertainty, the prince tests negative for HD and Therese writes their love story living in the shadow of HD.