Caregiving

Caring for the Chronically Ill in America

On December 1, 2019, the Wall Street Journal printed an article that really hit home. 

Dr. Arthur Kleinman, professor of medical anthropology and psychiatry at Harvard Medical School, is the author of the article:

Treating Disease Is No Substitute for Caring for the Ill“.

“The American health-care system focuses overwhelmingly on curing acute problems.  It needs to do far more to provide ongoing support for patients with chronic maladies.

The U.S., in effect, has two health systems.  One addresses disease, the science of what makes us sick; the other addresses illness, the human experience of being sick.  Disease demands treatment, while illness calls out for care.”

40-50 millions of Americans act as family caregivers.  Included in those millions are caregivers for a loved one with Huntington’s disease (HD).  HD is a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Parkinson’s and Alzheimers at the same time.  There is NO CURE.  More on Huntington’s disease-hdsa.org   

Custodial Care, a non-medical care that helps individuals with their daily basic care, such as eating and bathing. Custodial care for an individual is generally recommended by authorized medical personnel, but providers of custodial care are not required to be medical professionals.

Custodial care at home is typically covered only under long-term care (LTC) insurance, not by Medicaid, even though home care is cheaper than a nursing facility.

Lora, Cindy, Marcia Marin

Unfortunately, for HD families, insurance doesn’t pay for custodial care, unless they have LTC, so family members provide the care for their loved one.  HD patients can live up to 20 years with the disease and need custodial care for years.  I for one can vouch for this as my two (2) sisters-in-law each struggled with HD for 17 years.  Luckily, my family was able to pay for private caregivers but not everyone can do this.

We Can Never Lose HOPE………..

Visit my author page and read about my HD journey.  https://theresecrutchermarin.com

More on Dr. Kleinman:  https://en.wikipedia.org/wiki/Arthur_Kleinman

 

 

 

 

Hope

Priscilla Chan and Mark Zuckerberg Want to Cure All Diseases by 2100

 

Last week, Gayle King, CBS Good Morning news, interviewed Mark Zuckerburg and his wife Priscilla Chan, Facebook leaders, about many topics. I watched some of the interview and, thankfully, saw the discussion that could impact the Huntington’s disease community around the world.

Their goal is to cure all disease diseases by 2100.

        They have committed to 3 billion dollars to achieve this goal.

To read about it, visit facebook-couple-commits-3-billion-to-cure-disease-1.20649

To watch the interview, click here:  https://youtu.be/OfjSLMiQG7U

I won’t be around, if you’re a baby boomer, maybe my great or great, great grandchildren will be on this earth.

After watching the interview, I got to thinking, “I wonder if Huntington’s disease (HD) is high on the list?”

I say this because I believe Huntington’s disease is the cruelest disease on the planet!

All diseases cause some level of suffering, but HD doesn’t just affect the patient, but everyone in the family and the suffering can go on for many years; my two (2) sisters-in-law struggled with HD for 17 years.    What is Huntington’s Disease?

I am a Huntington’s disease advocate, volunteering for Huntington’s Disease Society of America (HDSA), the premier nonprofit dedicated to improving the lives of everyone affected by Huntington’s disease and their families. http://HDSA.org

We Can Never Lose HOPE…

To learn more about my Huntington’s disease journey and the book I published to raise awareness, generated dollars to donate to HDSA, visit https://theresecrutchermarin.com

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is available on many book websites like Amazon.

Photo by jdlasica on TrendHype / CC BY

 

 

Hope, Watching Their Dance

More on Updating the Nonfiction Book, “Watching Their Dance”

In the December 3rd blog, I posted about my editor suggesting I update the front cover of Watching Their Dance with a quote from the review I received from Kirkus Reviews.

Full Review:  https://www.kirkusreviews.com/watching-their-dance/

Since I published in 2017, many promising clinical trials have been started around the world, so I also updated pages 306 & 307, “Huntington’s Disease Update”.

Here is an Excerpt from “Huntington’s Disease Update” page 306.

Through the years, I have coined the statement, “Huntington’s disease is the cruelest disease on the planet”. While there is still no treatment or cure for this fatal progressive disease, the Huntington’s disease community has been blessed with good news and HOPE for a treatment has grown exponentially.

In April 2017, when I published Watching Their Dance, Ionis Pharmaceuticals, Inc. had just announced a potential treatment for Huntington’s disease; a gene-silencing program. Experts said it could be the biggest breakthrough in neurodegenerative disease in 50 years.   Ionis stated they had favorable results from its 1/2a trial with the drug, IONIS-HTTRx.

HTTRx targeted the huntingtin gene that provides instruction for creating a protein called huntingtin protein. The mutated huntingtin gene expands causing abnormal CAG counts that creates a toxin protein that kills the nerve cells in the brain, which causes Huntington’s disease.

Author Therese Crutcher-Marin

To continue moving forward, Ionis partnered with Roche Pharmaceuticals to conduct the clinical trials on the drug, now called RG6042. The trial is currently being conducted at 80-90 sites in 15 countries. There are 660 patients with early symptoms of Huntington’s disease enrolled in the study.

To visit my author website, click on link: https://www.theresecrutchermarin.com

We Can Never Lose HOPE……….

 

 

Watching Their Dance

Updating Nonfiction Book- Watching Their Dance

A while back, my editor, Pam Feinsilber, suggested I update the front cover of my nonfiction book, Watching Their Dance, and highlight the review that Kirkus Reviews gave to the book.  So, I did.

The words I highlighted, that appear at the top of the front cover are:

This is a rare treat—a true story that is as uplifting as it is heartbreaking.  A poignant remembrance of a love forged in crisis.” —Kirkus Reviews

To read the full Kirkus Reviews on my nonfiction book, visit:  https://www.kirkusreviews.com/book-reviews/unknown/watching-their-dance/

Kirkus Reviews is an American book review magazine founded in 1933 by Virginia Kirkus. The magazine is headquartered in New York City.  Every author wants a good review from this magazine.  

Author Therese Crutcher-Marin

To visit my author website, click on link: https://www.theresecrutchermarin.com

We Can Never Lose HOPE……….

 

 

Therese-Author

Happy Thanksgiving to You and Your Family

         My family wishes you peace, love and harmony

                      on this Thanksgiving Day 2019.

Thanksgiving is a holiday that’s all about gratitude — after all, “thanks” is                                                    right there in the name.

From John, Therese, Keith, Vanessa, Fran and Scott in Northern California!

We Can Never Lose HOPE………………….

Therese-Author

Hang On To A Dream…………….

What is life without dreams?  Or, another way to put it, what are the goals you wish to achieve in your life because you need to set goals in order turn your dreams into reality.

I would venture to say, most people have dreams (goals); whether it be a dream of owning a certain car, a dream vacation, dream home, dream of a spending your life with someone you love, etc.

Article on Differences between goals and dreams

Growing up in Kansas, my dreams were not grandiose; they were pretty simple dreams that I thought would make me happy, i.e. falling in love and sharing my life with my soulmate, going to college, having children and serving my fellowman.

HDSA 2019 Convention

After discovering Huntington’s disease could steal the people I loved, I dreamed of “A World Free of Huntington’s Disease“. I have hung on to that dream for 41 years and will never let go of it and will work towards it until I die.

This is also the Huntington’s Disease Society of America (HDSA) Vision Statement.  hdsa.org/about-hdsa/  

We Can Never Lose HOPE….

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to the disease.  As of January 1, 2020, a dream of mine will come to fruition.  A new, official HDSA San Francisco Bay Area Affiliate will begin operating and Amy Fedele is the Co-Chair and I’m the Chair.  The Stanford and UCSF Centers of Excellence Teams are involved and it is our hope to increase our presence in the San Francisco Bay Area that has a population of 7.1 million.

My author website is: https://www.theresecrutchermarin.com

You can read about my HD journey and the book I published, Watching Their Dance.  100% of the profits are being donated to the nonprofit, HDSA.  

 

 

 

 

 

 

 

 

 

 

 

Grief, Love

Love and Loss

HDSA 2019 Convention

Most folks have opened their hearts to love whether it be love for parents, siblings, grandparents, children or a rich, deep love for another person; spouse/significant other.

When we love, we don’t think about the emotion of loss that will eventually occur when the person you love dies.  I think it’s human nature not to spend time thinking about that event.

You cannot feel the emotion of love without the emotion of loss/grief. I ask, is it worth it to love?  I believe it is.   Article: If you love you will grieve

When I married John I was scared since he had an unknown gene status for Huntington’s disease (HD), a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Alzheimers and Parkinson’s.  The disease strikes young and when a parent has HD, each child has a 50/50 chance of inheriting the mutated huntingtin gene which causes the disease. what-is-hd/overview-of-huntingtons-disease/

I knew the possible consequences of my decision, but being young, I really didn’t know how this terrible disease stole everything from someone over a 10-20 year period of time. I soon learned, as my three (3) sisters-in-law succumbed to this horrific disease.  Watching these three (3) lovely ladies, I carried a loss in my heart for 24 years.  John didn’t want to be genetically tested so I realized I could also lose him this way.

Loving John wasn’t really a choice.  I fell in love with this man and my heart couldn’t give him up so I loved deeply knowing my life could change in a blink of an eye.

To read about our love story while living in the shadow of Huntington’s disease. please see my author website:  https://www.theresecrutchermarin.com

We Can Never Lose HOPE…….

I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to the disease.  Beginning January 1, 2020, there will be a HDSA San Francisco Bay Area Affiliate.  Amy Fedele is the Co-Chair, I’m the Chair.  The Stanford and UCSF Centers of Excellence Teams are involved and it is our hope to increase our presence in the SF Bay Area that has a population of 7.1 million.

My author website is: https://www.theresecrutchermarin.com

You can read about my HD journey and the book I published, Watching Their Dance.  100% of the profits are being donated to the nonprofit, HDSA.  

 

 

 

 

 

 

 

 

 

 

Family, Huntington's Disease

More About Social Security and Huntington’s Disease

In a previous blog, I wrote about Social Security Disability Insurance and the difficulty Huntington’s disease (HD) families experience when applying for benefits and how for a HD family, who might have two (2) or more family members struggling with the disease, disability dollars are essential for their financial survival.  https://hdsa.org/find-help/healthcare-and-future-planning/disability-chat/

Applying for Social Security:  https://hdsa.org/find-help/healthcare-and-future-planning/disability-benefits-and-hd/disability-support/

I know a family in town where multiple members are struggling with HD; mom and three (3) adult children who have Juvenile Huntington’s disease.  The father/dad, a physician is still working, and is the caregiver for his loved ones at home.  To have disability benefits for these four loved ones is, no doubt, helpful.

Another family challenged by HD is the O’Donnell Family. A film by Rae Maxwell and produced by HDSA, Her Mother’s Daughter, introduces the world to Kathi O’Donnell and shows the devastating impact that Huntington’s disease (HD) & juvenile Huntington’s disease (JHD) has had on the O’Donnell family. The film is a window into Kathi’s inspiring journey as a caregiver as we see the different stages of HD & Juvenile Huntington’s disease – a rare form of HD that progresses more rapidly than adult onset.

To watch the film, click here. https://youtu.be/zXfDJ2aW4hw

We Can Never Lose HOPE……

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to the disease.  As of January 1, 2020, a HDSA San Francisco Bay Area Affiliate will begin operating.  Amy Fedele is the Co-Chair, I’m the Chair.  The Stanford and UCSF Centers of Excellence Teams are involved and it is our hope to increase our presence in the SF Bay Area that has a population of 7.1 million.

My author website is: https://www.theresecrutchermarin.com

You can read about my HD journey and the book I published, Watching Their Dance.  100% of the profits are being donated to the nonprofit, HDSA.  

 

 

 

Caregiving, Hospice

November Is Hospice Month

Every November for the last ten (10) years of my healthcare career, was focused on promoting Hospice Care in Sutter Auburn Faith Hospice service area.  What is Hospice?

Since I became a volunteer for the nonprofit, Huntington’s Disease Society of America (HDSA), I’m pleased Hospice care is talked about more openly to Huntington’s disease families.  Hospice care supports the patient and the family.

We live in a society that doesn’t like to discuss death, so I like to post information that can help families when confronted with a terminal disease diagnosis.  It’s good to know that Medicare & Medicaid have a hospice benefit.  Most private insurance have one also.  The Outreach Committee that I managed took advantage each November to promote hospice care, educate the community and visit doctors offices.  Patients can be admitted to hospice with a referral from a doctor who believes the patient has six months or less to live. Article:  When-is-it-time-to-contact-hospice

Article:  huntingtons patients would benefit from more hospice involvement researchers argue

To watch a video on Hospice Care, visit: https://youtu.be/sYG5VqRvPiU

Therese at the 2018 HDSA Annual Convention in LA.

I’m a Huntington’s disease advocate and a hospice advocate.  My two (2) sisters-in-law, Marcia and Cindy, who had Huntington’s disease, were on my hospice program and died peacefully with no pain.

You can read about my journey with Huntington’s disease and my hospice work on my author website: https://www.theresecrutchermarin.com

We Can Never Lose HOPE…….

Huntington's Disease

A Risk Worth Taking

Most people do not ponder over the term “at risk” and how these two words can shape your life; either in a good way or a bad way, depending on how you look at it.  “Life is a series of calculated risks – nothing more. Everything that you decide to do has a margin of risk.” 

John and his three (3) sisters discovered, quite suddenly, that their mother had Huntington’s disease, and were “at risk“, each having a 50/50 chance of inheriting the cruelest disease on the planet. Huntington’s disease (HD) is a rare, fatal, brain disorder that has all the symptoms of ALS, Alzheimers and Parkinson’s at the same time.  And, there is NO CURE.  What is HD

At the time, there was no genetic test for the disease, so in my mind, at risk” would be forever. To me, it meant I would live with an unknown factor in my life that could not be controlled.  I’m a planner with no spontaneity in my body. My comfort level is having control of a situation so I’m prepared, and never surprised.

So, with that said, I was unsure about living a life at risk” with the man I loved.  What would you have done if you were in my situation?

Through life experiences, I came to realize that risks are almost always necessary ingredients in the recipe that is happiness.

_________________________________________________________________________

I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to this horrific disease.  A group of HD advocates and myself have formed a team to become a HDSA San Francisco Bay Area “Affiliate” to serve the HD community where 7.1 million people live. 

My book, Watching Their Dance” is available on many book websites and $7.00 is donated to HDSA every time the book is purchased.  https://www.amazon.com/-/e/B06ZY85776

We Can Never Lose HOPE….