Browsing Tag

#huntingtonsdisease #WatchingTheirDance #HDSA

Forgiveness

Learning to Forgive

Author Therese Crutcher-Marin

I’m currently in a situation where forgiveness would allow me to move forward.  But, I’m stuck and having a hard time forgiving because I don’t understand why it happened, it makes me angry, it indirectly hurting other folks and it’s counter productive.

I talk about kindness and forgiveness on my personal Facebook wall quite often, so at this time, I’m working on not just “Talking the Talk” but “Walking the Talk”.  

THE POWER OF FORGIVENESS – AND WHY IT’S HARD   https://www.powerofpositivity.com/

“The act of forgiveness may just be the single most powerful antidote for the pain caused by others.

Forgiveness does not mean that you “forget it and move on.” Nor does forgiveness mean that you absolve the person of their actions.

Forgiveness, instead, is choosing to compassionately release the desire to punish someone or yourself for an offense.

Yes, forgiveness is a choice. Yes, you can forgive yourself. But here’s the thing: while we may accept these statements on the surface, we often have trouble following through on the act of forgiveness – be it forgiving ourselves or someone else.”

We Can Never Lose Hope………..

 

 

 

 

Photo by symphony of love on Foter.com / CC BY

A Love Story, Marketing

Memoir Appeals to a Broad Audience

When I began writing, Watching Their Dance, a nonfiction story, I wanted to appeal to a broad audience.  After educating myself and reading about marketing a book, I realized I needed to narrow my focus first on the audience that I was pretty sure the story would appeal to.  That audience was the Huntington’s disease community.  Once you have success with that audience, then you begin to branch out to another audience.  

Here’s the truth: When you write for everyone, you write for no one.   https://goinswriter.com/writing-tip-be-specific/ 

My biggest supporters, the HD community,  did and still do support me and now I’m branching out to other audiences who might enjoy my book.  The first audience I’m focusing on are readers who like love stories; the second audience are folks who like to read about a person/family overcoming a tremendous challenge in their life.

 Marika Jaegers, HOPES Project Co-Leader & Student Researcher, who reviewed the book, said this:  

“Watching Their Dance offers a wide range of insight into living at risk for Huntington’s, living with Huntington’s, and caring for someone with Huntington’s. It is a worthwhile read for a broad audience: those affected by Huntington’s Disease, those curious about the disease, or those who know nothing of the disease but wish to read a captivating and insightful memoir.”  Stanford Literature-Corner

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 sold in the U.S. will be donated to HDSA.  http://www.hdsa.org     Last December, Therese and John donated $9,015.00 to HDSA that was the profit from book sales since Therese published in April 2017.

We Can Never Lose HOPE………..

#LetsTalkAboutHD      #WeCanNeverLoseHOPE     

#HDSAFamily    #HDSTRONG

 

HDSA Northern California Chapter

The Sacramento Team HOPE Walk

 

The HDSA Northern California Chapter is holding its         10th Annual Sacramento Team HOPE Walk. 

Please come out and help in the fight against the cruelest disease on the planet; Huntington’s disease. (HD is a fatal, genetic brain disorder with no cure. It affects children and adults.  It’s like having ALS, Alzheimer’s and Parkinson’s at the same time).  http://www.hdsa.org

To register go to:  http://www.hdsa.org/thwsacramento

You’ll receive a T-shirt and breakfast will be provided. Coffee, bagels, fruit, yogurt, pastries. 

 

2 great RAFFLE prizes for the kids! GolfLand/SunSplash in Roseville! 

 

Family, Hospice

Hospice Care for End Stage Huntington’s Disease Patients

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.

https://www.neurologyadvisor.com/movement-disorders/defining-needs-for-palliative-hospice-care-huntington-disease/article/701506/

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……..

HDSA Northern California Chapter

Dr. Wheelock & Khandar are Honored at the HDSA Sacramento Team HOPE Walk

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……………………

Taking Care of Yourself

Coping With a Challenging Issue

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:

  1.  Talk to a counselor
  2.  Talk with your primary care physician about anti-depressants
  3.  Attend a support group that addresses the issue
  4.  Have open communication with family
  5.  And never lose HOPE

Two good articles to help you through tough times:  

https://tinybuddha.com/blog/a-4-step-plan-to-deal-with-even-the-toughest-challenge/

http://time.com/3002833/how-to-be-resilient-8-steps-to-success-when-life-gets-hard/

We Can Never Lose HOPE……………

 

 

 

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Fundraising, Helping Others

Volunteer at the Nonprofit, HDSA Northern California Chapter

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    

http://hdsa.org/volunteer-opportunities/  

                               

We Can Never Lose HOPE…………….

Author Therese Crutcher-Marin

Therese has been a member of the HDSA Northern California Chapter Board of Directors since January 2017.  She will be president of the Chapter in 2020.

Therese-Author

Happy 4th of July America!

Fun Facts Regarding 4th of July and “Our Declaration of Independence”

Today in history:   https://www.loc.gov/item/today-in-history/july-04/

50 Facts about the Declaration of Independence: https://www.landofthebrave.info/declaration-of-independence-facts.htm

-It could be argued that “Independence Day” should be July 2nd, 1776.  

-It was on July 2nd 1776 that our “Continental Congress” voted in favor of independence.

-On July 4th it was officially adopted and published in local papers.  Only our president of congress, John Hancock and secretary, Charles Thompson had signed the declaration on the 4th of July 1776.

-John Adams, later to be our president, thought July 2nd should be our day of independence.

To reminisce just a bit:  When I was growing up in Kansas, I loved sparklers.  My sisters and I had so much fun running around on the five acre backyard property of my Aunt Mary and Uncle’s Bill’s home.  Kansas has thunderstorms all summer long so no one worried about fires.  We also shot off bottle rockets with my cousins, Mike, Rick, Tim, Larry Mike, Kevin and Grant. Great memories!

From my family to yours, Have a wonderful 4th of July! 

 

 

 

 

We Can Never Lose Hope…………

 

 

 

 

Huntington's Disease

Trey Gray

Trey Gray has had a successful career as a professional drummer. Gray played with Faith Hill on her climb to fame for seven years and then played with Jewel. He is now the drummer for the popular country duo, Brooks and Dunn. In 2003, Trey Gray tested positive for the Huntington’s disease gene and has since been committed to supporting research and raising awareness about HD. http://aheaddrumsticks.com/trey-gray.html

Trey became the official spokesperson for The Huntington’s Disease Society of America. He’s glad he can help in heightening awareness of the disease. He hopes to put a face on this terrible disease and to give other families hope and faith to know my generation will be the last to have to deal with this.

Trey said, “People can help by going to the web-site hdsa.org. There you can find ways to volunteer, make a donation or just lend support to a family going through this disease.”

HDSA Northern California Chapter Convention/Education Day

Trey wrote a book jacket comment that appears on the back cover of my nonfiction book, Watching Their Dance“Tears, laughter,blessings and HOPE…An amazing story that will touch, and help, I pray, everyone who reads it.”        

Amazon link to book:   https://www.amazon.com/default/e/B06ZY85776?redirectedFromKindleDbs=true 

100% of the proceeds from the book is being donated to Huntington’s Disease Society of America.  

We Can Never Lose HOPE…..

 

 

 

Family, Watching Their Dance

Something Good That Came Out of My Family’s Tragedy

 

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………………..