Browsing Tag

#WeCanNeverLoseHope

Hope

I Am A Hopeaholic

Therese selling books at the Woody Guthrie Folk Festival in Okemah OK in July 2017

I have to admit, I am a Hopeaholic.  HOPE was my armour protecting me from being drug down into the pit of despair.  HOPE was the only thing that kept me sane for 24 years as John and I stared in the faces of Lora, Marcia and Cindy, my sisters-in-law, as they struggled with Huntington’s disease (HD).

The year our son, Keith, was born was when Huntington’s Disease (HD) became real to my family.  It was October, 1984, when I was in the community hospital giving birth to our first born, while Lora, John’s oldest sister, was deeply depressed and self-medicating with alcohol.  She was in Starting Point, a drug and alcohol rehabilitation center on a different floor of the hospital.  So, John was on a roller coaster, joyous with our new son and upset and sad about Lora.

Lora, John and Keith in our backyard in 1985. Lora was living with us.

John and our son, Keith.

Excerpt from Watching Their Dance:  Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, Chapter 13:

“Then he turned away and began talking in a low voice.  It wasn’t hard to figure out what they were discussing.  It made me sad, but just then, a nurse walked in with Keith and placed in my arms this little person I’d been waiting for my whole life.  When John hung up the phone, we each held one of Keith’s tiny hands.  Staring into his bright eyes, I think we both saw HOPE.”

   

Gloria Steinem, one of my female hero’s.  https://www.history.com/topics/womens-history/gloria-steinem

We Can Never Lose Hope……………..

 

Author website:  http://www.theresecrutchermarin.com

 

HD Awareness

How Huntington’s Disease Affects Daily Life

Whenever I discover an article, a famous person, resources, a study about Huntington’s disease (HD) I like to blog about it.  What is HD?

An interesting article from the Food & Drug Administration (FDA) on Huntington’s disease:

On September 22, 2015, FDA held a public meeting to hear perspectives from people living with Huntington’s Disease (HD) about disease symptoms, the impact of HD on their daily life, and their experiences with currently available therapies.  As part of this commitment, FDA is holding at least 20 public meetings over a five-year period, each focused on a specific disease area.  To read the complete report:  https://www.fda.gov/downloads/drugs/newsevents/ucm491808.pdf

What I found most interesting is the section, “Overall Impact of Huntington’s Disease on Daily Life”.

Therese at the 2018 HDSA Annual Convention in LA.

Therese with the famous Dr. Nancy Wexler at the 2018 HDSA National Convention in Los Angeles. Therese’s author website is http://www.theresecrutchermarin.com  

100% of the profit from Watching Their Dance is being donated to the nonprofit, HDSA. Since publishing the book, Therese and John have gifted over $14,100.00 to them.

About Author, Love

Live, Laugh, Love

Each of us is given but one pass through life.  No retakes.  No repeats. 

So, make a covenant –

To live well.   Be good to yourself, your family and others.   Be big in behavior, not small.  Think mature, not immature.   Take the long view, not shortsighted.   Participate thickly, not thinly.   Consider carefully Abraham Lincoln’s thought that “in the end, it’s not the years in your life that count. It’s the life in your years.”  

Oscar Wilde

Or roll Oscar Wilde’s thought around during the day:  “To live is the rarest thing in the world. Most people exist, that is all.”  Celebrate how great life is.  The world is a beautiful place to be.  Colorful.  Stimulating.  Interesting.

To laugh often.     Laughter cures the soul.  It removes masks.  Humanizes.    Laughter heals many rifts, bridges many gaps.  It builds memories.   Laughter is universal among people.  Laughter makes you live longer.  Laughter makes friends, builds memories. Laughter vanquishes demons and warms your soul.

To love greatly and deeply. Love is the most generous gift given us.  Love makes all else possible.   To love greatly means to love unselfishly, for the sake of others as well as yourself.   To love things beyond yourself, beyond your personal interests. Love gives back two fold. Love improves others.  Love improves the giver.

From Prof. Marty’s Corner https://www.livelaughlove.com/live-laugh-love-blog/philosophy

Author Therese Crutcher-Marin
John and Therese

Love is what got John & I through the tough times…………watching Lora, Marcia & Cindy, my three sisters-in-law, struggle with Huntington’s disease.

Therese’s author website: http://www.theresecrutchermarin.com
A Love Story

Choices-A Fork in the Road

Choice, Chance and Change: The Three C’s of Lifehttps://www.habitsforwellbeing.com/the-3-cs-of-life-choices-chances-changes/  

Woody Guthrie Festival 7-2017

 

When I was 22 years old, I had to make the most difficult decision (choice) of my life. I was in love with a man I planned to marry after I graduated from California State University, Sacramento. I was at a fork in the road; marry John and live with the uncertainty of Huntington’s disease (HD) or walk away from the love of my life. HD is a rare, fatal brain disorder that is like having ALS, Alzheimers, and Parkinson’s at the same time. There is no cure. The famous folk singer, Woody Guthrie, had HD. info on HD

FORK IN THE ROAD is a metaphor, based on a literal expression, for a deciding moment in life or history when a major choice of options is required. https://www.success.com/13-quotes-about-making-life-choices/

Many of us have hard choices in our lives; I’ve never met anyone who hasn’t, as it is part of life. Some choices may be more difficult than others; leaving the man I loved who never hurt me or making a choice to stay, was mine.

Fortunately, I had an epiphany which lead me back to my love, John Anthony Marin. 

To help in the fight against Huntington’s disease, that killed my three (3) sisters-in-law, at young ages, John and I are donating 100% of the proceeds from Watching Their Dance, a love story while living in the shadow of HD, to the nonprofit, Huntington’s Disease Society of America (HDSA).  To date, we have donated over $14,000.00.  amazon.com/Watching-Their-Dance-

Huntington's Disease

Prevalence of Huntington’s Disease in the U.S.A.

Have you ever wondered where Huntington’s disease (HD) originated? Or why it’s predominantly found among Europeans and those of European descent? What-is-hd/

Europe

Most scholars believe that European migration was what brought HD alleles into the continents of North America, South America, Australia and New Zealand, and the prevalence of HD in these regions is now similar to that of Europe, where HD affects around 40-100 per million people. (or 4-10 per 100,000)

Experts estimate that one in every 10,000 persons—nearly 30,000 in the United States—have Huntington’s disease. (10 in 100,000, 100 in a million). Juvenile Huntington’s occurs in approximately 16% of all cases. http://web.stanford.edu/group/hopes/cgi-bin/hopes_test/hd-in-europe/

100% of the profits from the book, Watching Their Dance, an inspirational love story while living in the shadow of HD, is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). Since the book was published, in April 2017, Therese has donated $14,100.00 to the nonprofit, Huntington’s Disease Society of America.

Therese at the 2018 HDSA Annual Convention in LA.
HDSA

Compassion Use/Right to Try

The nonprofit, Huntington’s Disease Society of America (HDSA) continues to regularly update information on research and advocacy. Consider signing up for the HDSA newsletter. It contains a wealth of information.  http://hdsa.org.

Perhaps you are wondering about Right-to-Try legislation for Huntington’s disease patients who are end stage. HDSA provides a summary of the topic.

On its face, the idea behind Right-to-Try legislation is to allow families access to medications and treatments still in the clinical trial phase when an individual has no other treatment options left and is facing a terminal illness. Right-to-Try legislation focuses on cutting red tape in the Food and Drug Administration (FDA) to allow easier access to these experimental treatments. But, in reality, the FDA isn’t the issue.  Access to investigational therapies is already permitted through the Food and Drug Administration’s expanded access program. FDA currently approves 99.7% of all expanded access requests submitted by physicians and companies for patients with immediately life-threatening illnesses who cannot participate in clinical trials. Removing FDA from the process of obtaining investigational drugs, as Right-to-Try proposes, increases the risk of patient harm and creates confusion. When access to an experimental drug or treatment is denied, it’s almost always because the request has been denied by the pharmaceutical company, not the FDA.”

At this time all Expanded Access and Right-To-Try requests to Roche will be denied.  This was discussed in the recent HD Community-wide letter that was released by Roche in June.  Specifically, they said “We understand that families may wish to seek access to investigational medicines as soon as possible.  However, access to RG6042 can only be through clinical trial participation at this time. Because the benefits and risks of RG6042 are not fully understood, we are not able to grant pre-approval, compassionate use or “right-to-try” requests.  The company Roche/Genentech

https://www.bna.com/righttotry-doesnt-help-n57982092983/

We Can Never Lose HOPE…..

100% of the proceeds from the nonfiction book, Watching Their Dance, is being donated to the nonprofit, HDSA. https://theresecrutchermarin.com/purchase-book/

Hospice

November is National Hospice & Palliative Care Month

The last 10 years of my healthcare career was in Hospice at Sutter VNA and Hospice in Auburn California.  “Hospice is specialized type of care for those facing a life-limiting illness, their families and their caregivers. Hospice is quality of life and living each day as fully as possible.

What is hospice-care

How to have a talk about hospice care

I’m not a clinical person, I faint at the sight of blood, but empathy is my middle name.  As the Hospice Support Services Supervisor, I lead a Community Outreach Committee, recruited and trained hospice volunteers that I placed in a family’s home, developed & implemented a marketing plan each year, supervised the CBAG program (Children’s Bereavement Art Group) and the local hospice thrift store that I started from ground up.

Cicely Saunders, founder of Hospice.

Every November was an exciting time for the Outreach Committee because it afforded us the opportunity to reach out to doctors and the community to help them understand the benefits of hospice care.

About Dame Cicely Saunders 

We Can Never Lose HOPE…..

100% of the profits from Watching Their Dance are being donated to the nonprofit, Huntington’s Disease Society of America, (HDSA).  

The book is available on Therese’s author website http://www.theresecrutchermarin.com & many book websites like Amazon

 

Helping Others, Kindness

A Thanksgiving Meal for Our Homeless Clients

John and I volunteer on Monday’s at a Homeless Center in Auburn; I interview the clients and John is the shower guy.  After being interviewed, they pick out clean clothes then go to the shower.  (There are 4 shower stalls and John cleans them after every client)  https://www.aubsda.org/

Yesterday, the center held a Thanksgiving Dinner for our clients.  It was awesome and I have never seen so many smiles at one time on their faces.

So, two weeks before the dinner, and in order to know how much food we needed, the interviewers, that’s me, asked clients if they would attend the dinner.

It nearly broke my heart when many of them nodded, then dropped their head and said, “Yes, thank you, thank you.  I don’t have anywhere to go to have a Thanksgiving meal”.

I’m posting this puzzle picture because it portrays how the homeless feel.  Forsaken, forgotten, lost, abandoned, isolated.  John and I feel that the homeless are part of our community, like a piece in a puzzle, and if we can make one day a little bit better for them, then we have helped our fellowman.

We Can Never Lose HOPE….

 

 

 

 

 

Family, Thankful

My Family is Everything

I don’t know what I would do without my family; especially John.  My kids, Keith and Vanessa, are also terrific and stand right along beside me, along with their spouses, Fran and Scott.  Although I don’t say it enough to them, I have the best family.

I’m blessed and thankful to have these people in my life, knowing they will always be there for me and, in turn, I will always be there for them.  My love for them continues to grow along with the appreciation I feel for them.  why-family-is-not-an-important-thing-its-everything/

Since I’m a Huntington’s disease (HD) advocate, and an active volunteer with the Huntington’s Disease  Society of America (HDSA), I use HDSA’s hashtags,  #FamilyIsEverything and #HDSAFamily on my blog, Facebook wall, twitter, Instagram and Google+ posts all the time.  What is Huntington’s disease/

Give your family members a hug, forgive and remember, Family is Everything! 

 

 

              

 

 

 

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