Browsing Tag

#WatchingTheirDance

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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HDSA Northern California Chapter

Family is Everything

Last week, the HDSA Northern California Chapter Board members met with Dr. Vicki Wheelock. Lisa Kjer, social worker, Kathryn, Huntington’s D Clinic RN at UC Davis Medical Center, HD Clinic, to brainstorm how to increase the Chapter’s community disease outreach and fundraising.   https://www.ucdmc.ucdavis.edu/huntingtons/ 

The Chapter is dedicated to improving the lives of everyone affected by Huntington’s disease and we do this by generating dollars to help in the fight against this horrific disease that has no cure.  Through our fundraising efforts the Chapter supports/funds the HD Clinic, seven support group facilitators and the HD social worker.  

Kaiser Permanente HD website:   https://mydoctor.kaiserpermanente.org/ncal/specialty/genetics/specialty_clinics/huntington_disease.jsp   

The Huntington’s Disease Society of America’s slogan is, “Family is Everything” & “No one fights alone” . The Huntington’s Disease community is truly one big family.      http://northernca.hdsa.org/     https://www.facebook.com/hdsanocal/  

We Can Never Lose Hope…………

 

A Love Story

Writing Your Story to Heal

John and I have just returned home from the Huntington’s Disease Society of America (HDSA) Convention in Los Angeles, California where I promoted my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.  Author Website: http://www.theresecrutchermarin.com

The question I get asked most often when I interact with folks is, “Why did you decide to write a book?”  My reply is, “The motive was purely selfish because I was looking a way to heal from the loss of my three sisters-in-law to the cruelest disease on the planet; Huntington’s disease”.  Article:  The Healing Power of Telling Your Story 

In 2008, Cindy, my third sister-in-law passed away and in 2010, I began writing my story.  A counselor I’d seen for years suggested I write a book as a way to heal.  Seven years later, in 2017, I held a book in my hands and could honestly say, “the process of writing my story, validated what I had gone through, and allowed me to move the grief I harbored to the pages of the book; so, yes, I have healed”.  

Article on Benefits of Writing:   Writing About Emotions May Ease Stress and trauma  

We Can Never Lose Hope

HDSA

HDSA Convention-June 9, 2018-HOPE

Huntington’s Disease Society of America Annual Convention Continues: 

Today, Saturday, June 9th, has many workshops to offer to attendees again. Here is the link to today’s schedule.    https://guidebook.com/guide/119978/schedule/#date/06-07-2018

The morning will be spent listening to the experts at the HDSA Research Forum.

Please REMEMBER, some of the workshops will be LIVE STREAMED. Go to:  https://guidebook.com/guide/119978/list/586374/

In the afternoon,many Workshops are available to select from.  Here are a few: 

  1. Benefits of Staying Connected with Your Center of Excellence
  2. HD Activity Center for Persons with HD
  3. HDSA Special Events and Fundraising to Catapult our Mission Work
  4. How to Effectively Manage the Motor Symptoms of HD
  5. Diagnosing and Managing JHD

From 6- 7  p.m., is the Gala Reception and dinner and dancing goes on until 1 p.m. The Gala brings the 33rd HDSA Annual Convention to a Close.

       

We Can Never Lose HOPE…….

John, Dr. Vicki Wheelock, and myself at the 2017 HDSA National Convention in Schaumburg IL.

The Non Fiction Book

A Labor of Love

May is Huntington’s Disease Awareness Month

When I began writing the nonfiction book, Watching Their Dance, it developed into a Labor of Love, a new expression of my love for my three sisters-in-law.  After Cindy died in 2008, I was looking for something good and positive to come out of Lora, Marcia and Cindy’s struggle with Huntington’s disease. The idea of sharing our family’s experience with HD was born out of this tragedy.  What is Huntington’s disease?

John and I both mourned the death of each of sister even before they we gone from this world because Huntington’s disease shrinks the brain and dementia and cognition problems occur.  Both Marcia and Cindy’s eyes were vacant the last years of their lives and I still tear up when I think about it.   Info on grief and loss:  https://www.centerforloss.com/2016/12/journey-grief-six-needs-mourning/ 

I worked on the manuscript for seven (7) years, learning the craft of writing, attending writing conferences, seminars and in 2015 I began working with an editor and published in April 2017.  Writing John and my story and publishing it was the most rewarding thing I’ve done in my life and I’m very proud of the accomplishment.  At the same time, it’s the hardest thing I’ve every done except for giving birth to my children, Keith and Vanessa, which also was a labor of love.  

Therese will be selling her memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, at HDSA Annual Convention, June 7-9.  The book is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format. 100% of the profit from the book is donated to HDSA. 

Therese and John donated $9,015.00 to Huntington’s Disease Society of America (HDSA) which was the profit from her book since she published in April 2017.

#LetsTalkAboutHD #HDAwarenessMonth #HDSAFamily

#WeCanNeverLoseHope #WatchingTheirDance

 

 

 

 

 

HD Awareness

“House” TV Series & Huntington’s Disease

   MAY IS HUNTINGTON’S DISEASE AWARENESS MONTH!

Every now and then, you will find a Huntington’s disease patient featured on a TV show, usually in a medical oriented show/soap opera, etc.  House is one such program, and there are others.  I’ve listed the three scenario’s that appeared on House. Actor Hugh Laurie stars.   https://en.wikipedia.org/wiki/House_(TV_series) 

#1. A seemingly fit and healthy personal trainer collapses while filming an exercise DVD, but her symptoms convince House she is hiding something – and gaps in her medical records increase his suspicions. Meanwhile, Thirteen begins a clinical trial for Huntington’s disease as her nerves begin to degenerate.      http://www.huntingtonsdiseasefoundation.org/ 

#2. The grumpy medic treats a 16-year-old girl who collapsed at her school’s Christmas pageant. He determines her liver is failing, but cannot fathom why. Meanwhile, Foreman and Thirteen grow closer during the trials for the Huntington’s disease drug.  https://www.wehaveaface.org/ 

#3. A man suffering chronic and severe pain makes an unsuccessful attempt to commit suicide. The grumpy medic agrees to take up his case, but is himself racked by intense pain in his leg. Thirteen receives help from Foreman while taking part in his Huntington’s disease clinical trial.  http://www.hdsa.org 

I’m really glad Huntington’s disease has come out of the closet; it’s another neurodegenerative disease like Alzheimers, Parkinson’s, ALS but there seems to have been a stigma attached to the disease.  http://www.neurodegenerationresearch.eu/about/what/ 

We Can Never Lose Hope……………………

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.

#LetsTalkAboutHD

#HDAwarenessMonth 

HD Awareness

May is Huntington’s Disease Awareness Month

Tomorrow is MAY 1st, and the Huntington’s disease (HD) community kicks off a month of heightening awareness for this rare, genetic disease, which most people know nothing about.   http://hdsa.org/what-is-hd/ 

When I begin a conversation with someone about HD, I ask, “Do you know who Woody Guthrie is?”  If they say, “No”, I respond, “He’s a singer-songwriter, one of the most significant figures in American folk music who wrote the song, This Land is Your Land and he died of Huntington’s disease.   http://www.woodyguthrie.org/biography/biography1.htm    

Marjorie Guthrie, his wife, made him the HD poster child, after his death, for the organization she started,  “The Committee to Combat Huntington’s Disease” which evolved into Huntington’s Disease Society of America (HDSA) after her death in 1983.  http://www.hdsa.org   

History of HDSA   http://hdsa.org/about-hdsa/hdsa-history/             

What is Huntington’s disease?  I describe it to people as the cruelest disease on the planet because:

#1-it’s hereditary, so it can devastate families for generations;

#2-it is like having ALS, Parkinson’s & Alzheimers, with all their symptoms, at one time;

#3-there is no cure;

#4-there is no therapy;

#5-it’s progressive and people can struggle with it for 10-20 years;

#6-there is adult HD and Juvenile Huntington’s Disease (JHD);

#7-it can financially devastate a family because of the endless years of caregiving for a loved one.  

Today there are many organizations advocating for the disease and many researchers and scientists working toward a cure.  A few of them are:

Huntington’s Disease Society of America http://www.hdsa.org

Help4HD International  https://help4hd.org/

Hereditary Disease Foundation   http://www.hdfoundation.org/ 

Huntington’s Disease Foundation  http://www.huntingtonsdiseasefoundation.org/ 

WeHaveAFace  https://www.wehaveaface.org/

  

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     Therese and John donated $9,015.00 to HDSA that is the profit from book sales since Therese published in April 2017.

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Kindness, Love

The Hero’s In My Life

Like many people, I have several hero’s that I hold in high regard.  Most of them, for me anyway, are women who have inspired me, taken chances and usually succeeded, stepped outside their comfort zone to achieve their goal(s). 

#1. Elisabeth Kubler-Ross-A Swiss-American psychiatrist, a pioneer in near-death studies and the author of the groundbreaking book On Death and Dying (1969), where she first discussed her theory of the five stages of grief, also known as the “Kübler-Ross model”.   https://en.wikipedia.org/wiki/Elisabeth_K%C3%BCbler-Ross 

Since I worked in hospice for 10 years, I’m grateful to her for starting the conversation on dying and how hospice can assist the dying to have the highest quality to their life until they pass.  She created the first hospice house in England, and the hospice idea moved to the U.S. in the 1960’s.

#2.  Mother Teresa-Known in the Catholic Church as Saint Teresa of Calcutta, was an Albanian-Indian Roman Catholic nun and missionary. This woman emits unselfishness, kindness, love and hope.   https://en.wikipedia.org/wiki/Mother_Teresa  

#3.  Lora, Marcia and Cindy, are my hero’s not just because they had Huntington’s disease; it was their attitude towards life, and how precious it was to them despite their circumstance.  Also, they were the kindest, most generous, positive women I’ve ever met.   What is Huntington’s disease 

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 is being donated to HD organizations around the world.

We Can Never Lose Hope………………..

 

About Author, HD Awareness

Writing for a HD Cure

People write books for many reasons.  In my instance, I wrote Watching Their Dance with several goals in mind. when book sales benefit a cause

Recognizing the goals or reasons for writing a story, I believe, will assist a writer with marketing their book, because it helps  identify their audience.

My goals/reasons for writing, Watching Their Dance:

  1. Create a tool to heighten awareness of Huntington’s disease
  2. Communicate the truth of what HD families go through for generations when HD is in their family
  3. Give the Huntington’s disease community around the world a way to generate money for their HD organization, i.e. HDSA, Huntington’s Society of Canada, Huntington’s Disease Association, etc., by purchasing a copy and telling others about it
  4. Donate the profit from book sales to Huntington’s Disease Society of America (HDSA)
  5. Contribute to the fight against HD monetarily that brings us closer to a cure or therapy  
  6. On a personal level, I wanted to heal from the loss of my 3 sisters-in-law, who had HD, and writing the story was therapeutic
  7. Honor Lora, Marcia and Cindy, and create a legacy
  8. Ultimately, I wanted to help find a cure for the cruelest disease on the planet

After setting my goals, the Huntington’s disease community around the world became one of my audiences. I have others that I will share in another blog.

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.

 

 

Helping Others

In Memory of Pamela Gusland

I write this blog in the memory of Pam Gusland, a local therapist I saw for many years who helped me through tough times when Marcia and Cindy struggled with Huntington’s disease and the stress of living with John’s unknown gene status for Huntington’s disease wore me down.  http://www.hdsa.org 

Last year, after my book was complete and I began selling it, I looked up Pam because I wanted to give her a copy since she had suggested many times over the years to write my feelings down because writing had a healing quality.  I wanted her to know I had taken her advice and through the creative process of writing and creating a book, I had healed. Thank you Pam for the support you gave me.

It had been eight years since I’d seen Pam, 2009, so I stopped by her office and found she was no longer there.  I began searching online and much to my disbelief, she had died of breast cancer in April 2017.

Her obituary in the local Auburn Journal newspaper pays a wonderful tribute to her:

After a long battle with metastatic breast cancer, Dr. Gusland died on April 5, 2017 at the age of 69. She spent her final days at her peaceful home in the Sierra Foothills. Dr. Gusland (Pam) was innately compassionate. She dedicated her life to a career of helping others. After several years of teaching special education, Pam transitioned into counseling with a Ph.D. in Clinical Psychology from The University of Denver. For over thirty years, she helped hundreds of individuals transform their lives through her private practice in Southern California and later in Northern California, where she served the Auburn community for the past twenty years.   http://www.legacy.com/obituaries/auburnjournal/obituary.aspx?n=pamela-faith-gusland&pid=186158505  

We Can Never Lose HOPE…………

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.

John & Therese donated $9,015.00 to Huntington’s Disease Society of America last December which was the profit from book sales since publishing in April 2017.