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.
Article on: How to forgive yourself and move on from the past
“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.
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…………….
John and I are participating in the HDSA Sacramento Team Hope Walk on Sept. 8th, 2018 to help in the fight against Huntington’s disease that killed my 3 sisters-in-law, Lora, Marcia and Cindy. Click here to register or to make a
Lora, Cindy and Marcia Marin
We are so grateful John tested negative for the mutated Huntingtin gene in 2016. I’m on the Huntington’s Disease Society of America (HDSA) Northern California Chapter Board of Directors organizing fundraisers and heightening awareness. http://www.hdsa.org
LUNCH IS PROVIDED WHEN YOU REGISTER
We Can Never Lose HOPE……
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
Another link directly to “The Marin Team” page: https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.participant&participantID=44954
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
FB page https://www.facebook.com/hdsanocal/
We Can Never Lose HOPE….
The HDSA Northern California Chapter will honor Dr. Vicki Wheelock, Clinical Professor Neurology UC Davis, and Dr. Suketu Khandhar, Kaiser, Movement Disorder Neurologist both practicing in Sacramento at the Team Hope Walk, September 8, at the River Walk Park, 651 Second Street in West Sacramento.
Register for the The Sacrament Team Hope WALK at: http://www.hdsa.org/thwsacramento
The Mission at the heart of the Northern California Chapter is dedicated to improving the lives of everyone affected by Huntington’s disease (HD). Since there is no cure for this horrific disease that affects both children and adults, the 54 HDSA Chapters around the country are charged with fundraising and heighten awareness. The dollars generated from local fundraising events help fund 43 Centers of Excellences around the county, fund HD support group facilitators, and fund an HDSA social worker to help HD families with resources. Northern California Chapter website: http://northernca.hdsa.org/
Dr. Vicki Wheelock
Dr. Vicki Wheelock’s HD patients are seen at the UC Davis Huntington’s Disease Medical Clinic, 3160 Folsom Boulevard, Sacramento, CA. 916-734-3588. https://www.ucdmc.ucdavis.edu/huntingtons
Dr. Suketu Khandhar with genetic counselor Mara Stirfry-Platt
Dr. Khandar’s HD patients are seen at Kaiser Permanente Huntington’s Disease/ Genetic Movement Disorder, 1650 Response Road, Sacramento, CA. 916 973-5000 https://mydoctor.kaiserpermanente.org/ncal/specialty/genetics/specialty_clinics/huntington_disease.jsp
We Can Never Lose Hope……………………
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:
We Can Never Lose HOPE……………
We are getting close to the Sacramento Team Hope Walk. Create your own Team and help the Northern California Chapter fundraise to continue supporting the four (4) Center of Excellences in Northern California, and the seven (7) Huntington’s Disease Support Group Facilitators.
Sign up here to participate: http://www.hdsa.org/thwsacramento
CENTERS OF EXCELLENCE:
UC Davis Medical Center-Sacramento https://www.ucdmc.ucdavis.edu/huntingtons/team.html,
UCSF Medical Center https://www.ucsfhealth.org/clinics/huntingtons_disease/
Stanford Health Care-Bay Area https://stanfordhealthcare.org/medical-conditions/brain-and-nerves/huntingtons-disease.html
We Can Never Lose HOPE……………
Sponsor of Hope Walk
If you are interested in volunteering for the Huntington’s Disease Society of America Northern California Chapter, there are many opportunities where you can help. http://northernca.hdsa.org/
Here are a few ways you can contribute to improving the lives of individuals and families affected by Huntington’s disease (HD):
* Participate in the planning and execution of Chapter events: Annual Team Hope Walk, annual Chapter Convention, and Kaiser Permanente Education Days
* Provide transportation to HD families
* Provide light housekeeping/childcare for HD families *Participate in clinical trials and observational studies
* Make phone calls to donors to thank them for their contribution
* Serve on the HDSA Northern California Chapter Board of Directors *Post on NorCal Chapter social media platforms: Facebook, Twitter, Instagram *Assist with marketing/publicity/outreach