Caregiving

Caring for the Caregiver

When I was working in hospice at our local hospital in Auburn CA, the interdisciplinary hospice team addressed the needs of the patient and the family. The family unit was the focus of the care we provided. Caring for a loved one strains even the most resilient people, so the wellbeing of the caregiver, or carepartner, is vital to the patient remaining at home with their family; where their memories were made.  Click here for info on hospice care:  https://www.nhpco.org/

When I’ve attended a Huntington’s Disease Education Day in the past, there always is a discussion about the wellbeing of the carepartner.  I picked this brochure up at the Education Day at Kaiser Permanente in Sacramento last year and thought I’d share it with you.

CAREGIVER’S CORNER WEBINARS-Presented by Huntington’s Disease Society of America (HDSA)

  http://hdsa.org/living-with-hd/caregivers-corner-webinars/  

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.

Therese and John donated $9,015.00 to HDSA in December which was the profit from the book since it was published in April 2017.  

Helping Others

Sacramento Huntington’s Disease (HD) Support Group

People have asked me why I attend the monthly HD support group in Sacramento when I currently do not have anyone affected by the disease?  Yes, my three sisters-in-law are gone, stolen from us by the insidious HD, but they are not forgotten.

I take part in the meetings in honor of Lora, Marcia and Cindy’s struggle with HD.  For over 25 years, John and I lovingly cared for and helped his three sisters through the disease process, without a support system, as neither a support group nor HDSA Center of Excellence existed in the late 1980’s and 1990’s in the Sacramento area.

Being present for those struggling with HD, listening, acknowledging their experience, pain, fears and doubts, and offering advice, gives me peace.  I will always have compassion in my heart for HD families, and have a need to help in some small way, because I know what they are going through.  If I could have talked with a HD family that was going through what John and I were experiencing, it would have been life changing for me.

If you’re considering joining a support group, this article might be beneficial to you:      http://davidsusman.com/2015/04/23/9-benefits-of-support-groups/  

Click on link for a larger picture of the list of support groups in Northern California:   https://www.ucdmc.ucdavis.edu/huntingtons/files/support_groups.pdf  

HDSA also offers free ONLINE SUPPORT GROUP MEETINGS.  To register please go to:   http://hdsa.org/osg/

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 books sold in the U.S. are being donated to HDSA.  John and Therese donated $9,015.00 last December which was the profits from books sold since Therese published in April 2017.

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Family, Love

A Message from Author Therese Crutcher-Marin

Many of you know I’m involved in the Huntington’s disease community and a board member on the HDSA Northern California Chapter.  Until I published my book, Watching Their Dance, I was unable to speak about John and my life at-risk for the cruelest disease because of the grief I carried in my soul.  Writing my story was a healing journey which allowed me to place the grief in a book and show the world what Huntington’s disease families go through for generations.    http://www.hdsa.org    

The following are reasons why I wrote the book and outcomes since I published April 2017.

  1.  The book is a personal HD fundraiser/HD awareness project and 100% of the proceeds from books sold in the U.S. are being donated to Huntington’s Disease Society of America (HDSA) to help in the fight against this horrific disease that killed my mother-in-law and 3 sisters-in-law. By heightening awareness, I hope to increase donations from folks who have never donated to our cause.
  2.  It’s an inspirational love story, over 38 years, and how John and I lived in the shadow of Huntington’s disease.  Since April 2017, I’ve sold 1,500 books/ebooks and my goal is 5,000. My book can be found on my Author Website: www.theresecrutchermarin.com, Amazon, B&N and other book websites.  $7.00 is donated to HDSA each time the book is purchased.
  3.  John and I donated $9,015.00 to HDSA in December 2017 which was the profit from books sold since I published in April 2017. 

We Can Never Lose HOPE………………..  

Woody Guthrie Festival 7-2017

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Huntington's Disease

Prevalence of Huntington’s Disease Worldwide

 Around the world, cases of Huntington’s disease are found in 5-10 out of 100,000 people. There does not appear to be a difference in the numbers for men and women while some variance is recorded for ethnic groups and geographical locations.

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.   http://www.hdsa.org        http://hdsa.org/what-is-hd/#stages  

For instance, rate of occurrence is highest in peoples of Western European descent, averaging around 7 per 100,000 people while only about one case per million is recorded for people of Asian and African descent.

According to nhs.uk, the rate of Huntington’s disease in the United Kingdom is 12 per 100,000 people.

In the United States approximately 10 per 100,000 have the faulty huntingtin gene and live either waiting for symptoms to begin or live/struggle with the disease.   http://web.stanford.edu/group/hopes/cgi-bin/hopes_test/hd-in-europe/#united-kingdom  

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a nonfiction/memoir, can be purchased on Therese’s author website        Amazon     B&N       &  Kindle, Kobo, Nook, and iBooks format.

100% of the proceeds from the book is being donated to Huntington’s disease organizations around the world. 

We can never lose Hope………………..Therese

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On Writing

Is EDIT Really a 4-Letter Word?

Authors hate editing. We hate it more than being interrupted or staring at the wall, frozen and unable to type a word. It is, unfortunately, the most important thing we do, once the story is down on paper. It’s time-consuming and hard and creates more work, but essential to creating a polished manuscript.

Editing needs to be done in four stages.

  1. SPELL AND GRAMMAR CHECK-Start slow. Drink coffee. Use the spell check and grammar available through your document writing software.
  2. EDITING SOFTWARE-Use a good software program for the second pass–preferably one that is not biased concerning Microsoft or Apple. There are editing programs on the web.
  3. READ ALOUD-Phase three has you in the driver’s seat once again. You must read it to yourself; page by page, and line by line. If you can do so aloud, all the better.
  4. HIRE AN EDITOR-Put another set of eyes on the manuscript. Yours are too used to your writing, too familiar with the story and will not catch the simplest of things such as a backward quotation mark.

To read full article:   http://www.bookdaily.com/authorresource/blog/post/2001431  

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a nonfiction/memoir, can be purchased on Therese’s author website        Amazon     B&N       &  Kindle, Kobo, Nook, and iBooks format.  100% of the proceeds from the book is being donated to Huntington’s disease organizations around the world.  

We can never lose Hope………………..Therese

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HD Awareness

Hero’s/Advocates In the Huntington’s Disease Community

There are many Huntington’s disease hero’s/advocates among us, some celebrities, some like myself, every day folks living their lives as fully as possible.  The pictures I shared on my blog are some of these hero’s/advocates: Musician Kate Miner, Woody & Marjorie Guthrie, Pitcher Joe Smith, Journalist Charles Sabine, Scientist Nancy Wexler,  Hockey player Jake Dowell, Movie producer Chris Furbee, Dr. Ed Wild, Dr. Jeff Carroll, Coach Mark Helfrich, Health & Fitness Guru Shana Verstegen, Blogger Dawn Quyle Landau and Drummer Trey Grey. (I’m sure there are others that belong on the list)

First and foremost, my sisters-in-law, Lora, Marcia and Cindy are my hero’s; caring for them was a privilege and an honor to walk beside them as they struggled with HD. 

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.  http://www.hdsa.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 is being donated to HD organizations around the world.

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HD Research

Ionis HTTRx Drug for Huntington’s Disease Narration

(If my video doesn’t appear, please go to  https://youtu.be/P8exuKRfuPE  to watch my discussion on Ionis HTTRx)

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a nonfiction/memoir, can be purchased on Therese’s author website        Amazon     B&N       &  Kindle, Kobo, Nook, and iBooks format.             100% of the proceeds are being donated to Huntington’s disease organizations around the world.  

We can never lose Hope……

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HDSA Northern California Chapter

Martha Lehman-2018 HDSA Northern California Chapter President

On January 13, 2018, the HDSA Northern California Chapter Board of Directors kicked off their first 2018 planning meeting with a new president and several new board members.  Martha Lehman, retired social worker supervisor II CPS at Yolo County, who has been involved in the board for over 20 years, is the new president.

The board also welcomed four new members; Heidi Ramos, Amy Fedele-Lucchese, Ron Davis and Cole Holderman. Each individual brings an expertise that will assist the board in reaching their goals.  

               

Northern California Chapter (NorCal) is planning many events for the local Huntington’s disease community that will full fill HDSA’s mission statement: Improving the Lives of Everyone Affected by Huntington’s Disease and vision statement: A World Free of Huntington’s Disease.

Please visit Huntington’s Disease Society of America  Northern California Facebook page and web page on HDSA website to see dates of upcoming events.    https://www.facebook.com/hdsanocal/     http://northernca.hdsa.org/    and sign up to receive email notices.    http://northernca.hdsa.org/about/join-our-email-list   

Some of the Chapters upcoming events are: local convention, San Francisco & Sacramento Team HOPE Walks, Kaiser/UC Davis Education Days, Conquering HD One Sip at a Time, and HOPE dinner fundraisers.

I have been on the HDSA NorCal Board for one year and is slated to be president in 2019. HDSA currently has 54 volunteer led Chapters and Affiliates across the United States with its headquarters in New York City. Watching the Dance Huntingtons 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 Huntington’s Disease Society of America. Proceeds from books sold in other countries, will be donated to a Huntington’s Disease organization in the country where to book was purchased.

 We Can Never Lose HOPE…………………Therese
The Marin Siblings

Excerpt from Chapter 17-“Watching Their Dance”

Chapter 17-A Neurological Exam

“The morning Marcia was to learn her test results, I raised the shade in our bedroom and the sun poured in, brightening my mood for a moment.  Neither John nor I mentioned her as we got ready for work, and by the time I got to my office, my stomach was churning.  I had such a hard time getting anything accomplished, I grabbed a cup of coffee and went outside for a break.  I leaned against the building and prayed.

That evening, the room seemed to grow cold when Marcia called and I watched John’s reaction.  My big, strong man crumpled in front of me, slowly wilting and then bending in two like a broken twig. I grabbed the phone and said, “Hi.”  All of a sudden, Marcia started talking in a flat tone of voice.

‘You know, the last few months at work have been hard.  Many of my co-workers said I slurred my words and thought I was drunk.’  She paused for so long, I wasn’t sure she was going to continue.  After a minute, she blurted out, ‘I had to stop wearing high heels, because I was losing my balance.  My memory was getting so bad, I started writing myself notes.'”

We Can Never Lose HOPE……………………….Therese

Therese’s memoir, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is an inspirational love story that was inspired by Lora, Marcia and Cindy Marin. 100% of the proceeds from the book is being donated to Huntington’s disease organizations around the world.  To purchase book go to:  http://www.theresecrutchermarin.com 

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The Marin Siblings

The Positive Nature of the Marin Siblings

I met John and his sisters in 1976, and I quickly became closer to Lora, Marcia and eventually to Cindy than I was to my own sisters.  These four very special people taught me to enjoy life everyday, never give up on your dreams, look at the positive side of things and not dwell on the negative. They are the most positive people I’ve ever met in my life.

John continues to be Mr. Positive and his attitude never changed even during our darkest times when each sister struggled with Huntington’s disease.   http://hdsa.org/what-is-hd/    Though they are gone from our sight, they still inspire me.

There are many benefits to thinking positively.  Here’s one article:  Positive Thinking   

Read Norman Vincent Peale, author of Power of Positive Thinking, famous quotes.  You’ll be inspired!   https://www.goodreads.com/work/quotes/1121350-the-power-of-positive-thinking  

“Researchers continue to explore the effects of positive thinking and optimism on health. Health benefits that positive thinking may provide include:
  • Increased life span
  • Lower rates of depression
  • Lower levels of distress
  • Greater resistance to the common cold
  • Better psychological and physical well-being
  • Better cardiovascular health and reduced risk of death from cardiovascular disease
  • Better coping skills during hardships and times of stress”

Therese’s memoir, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is an inspirational love story that was inspired by Lora, Marcia and Cindy Marin. 100% of the proceeds from the book is being donated to Huntington’s disease organizations around the world.  To purchase book go to:  http://www.theresecrutchermarin.com 

Subscribe to Therese’s Blog via Email

 Enter your email address to subscribe to Therese’s blog and receive notifications of new posts by email and receive the first chapter of her book, Watching Their Dance, via email.